Bob’s Pocket Guide

Bob Wold, Founder, Clusterbusters – Last Updated Sept 2026

Bob Wold has lived with cluster headache for more than four decades. That experience led him to found Clusterbusters in 2002, and he has led the organization as Executive Director ever since. In this guide, Bob shares his opinions, facts, and observations on the treatments that work, how to use them, and what to ask your doctor, all in plain, practical language from someone who's been there.

Read Bob’s bio

Opinions, Facts & Observations in the treatment of Cluster Headaches

Volume One: Conventional Treatments
Volume Two: Covering Alternative Treatments, is part of our complete guidebook, available on our companion site ClusterHeadacheAltTreatments.org.
Volume Three: Living Life with Cluster Headaches
Volume Four: Research & the Future & Hope
Volume Five: The Gatekeepers
Supplement Pages: Oxygen

Note: You will find that some information is repeated at different times and in different sections (volumes). This occurs purposely for a couple of reasons. Many different sections touch on some of the same important points. There are also many different sections that are available as a stand alone topics, so these individual topics require mentioning the same important points.

Volume One: Conventional Treatments

Cluster Headaches

Opening statement

This first section contains comments on some prescription medications used to treat cluster headaches that are still in the realm of alternative treatments..

The following opinions, found throughout this handbook, are just that, my opinions based upon collecting many reports of the effectiveness and side effects of medications, treatments and just living the life as a cluster headache patient. Also my personal experience in many cases regarding the section on prescription medications and treatments for clusters. (I tried over 70 of them in just the first 20 years of my cluster life.).

Many of these medications are used in combination with others and it’s difficult sometimes to pinpoint what actually may be helping, if they are. One thing that seems common among typical cluster drug therapies is that if a single drug or combination is not working well enough, a new drug is often added without removing anything from the treatment plan. It may be that an antidepressant, or anti-convulsive is replaced by a different type. What happens if you are on a beta blocker and a calcium channel blocker and seem to be getting only a 20% relief in your cycle, your doctor may want to add an anti-seizure med to the cocktail. Both patient and doctor don’t want to chance losing even that 20% relief and hope to build upon that by adding another type of medication.

This is how people end up getting on 6 or 7 different medications at the same time and still getting minimal relief.

When considering the risk versus reward of relief versus side effects, you need to consider the following. If a medication treats your clusters and gives you 80% relief and there are only a couple of minimal side effects, then it’s easy to determine whether or not you want to continue on that drug regimen. But if you are on two or three or more medications and getting less than great results, it’s more difficult to make those risk/reward decisions. Take a good look at the total side effects you are experiencing and also the possible long term effects, and compare the totality of the effects to the relief that you are getting. It may cause you enough concern to ask your doctor about switching things up a little.

Bob

Diagnosis and descriptions

Chronic vs. Episodic

The medical community and the public often get the facts wrong and if anyone needs to get it right, so we all get proper treatments, it’s us.

The diagnostic criteria for chronic clusters vs. episodic have nothing to do with intensity or quantity of attacks. It’s about distinctive cycles vs a never ending cycle.(other than an occasional break of a couple weeks.)

There are some distinct differences between them that distinguish the two conditions. Different treatments can work for one and not the other. Example: lithium can work for chronic clusters but is almost always useless for episodic. But the dose of lithium and many other drugs we use, far exceed normal doses used to treat what the medicine was developed to treat. Increased doses equal increased side effects.

Chronics often go through high and low periods which are sometimes connected to changes in season but these low periods are not the same as the breaks between cycles for episodics.

Between cycles for episodics their normal triggers such as alcohol will not trigger an attack for the most part. Triggers for chronics are always triggering for attacks whether they are in a high or low cycle.

That said, we are all different in some ways and we need to be careful about generalizing our symptoms vs generalizing cluster headache symptoms. Alcohol doesn’t trigger attacks for everyone although it does for most. Strong odors like gasoline aren’t triggers for everyone. Exertion can be a trigger for some people and a way to stop an attack for others.

Conventional Treatments

Our Motto: If you think you’ve tried everything and there are no new options, you’re wrong.

Devices

1. GammaCore Device

This handheld device that is produced by a company called Electrocore has been available in various parts of Europe for several years prior to being approved here in the states.. Results vary (just like everything else) but is worth looking at as a treatment. The device is placed on the front side of your neck along the Vagus nerve. It’s used abortively and also as a preventive that shows results that can improve over time as its used. There is a new device coming from this company in 2025.

Prescription Meds and OTC options

Comments:

Comments on some common prescription medications used to treat cluster headaches.

The following opinions are just that, my opinions based upon collecting many reports of their effectiveness and side effects. Also my personal experience in many cases

Many of these medications are used in combination with others and it’s difficult sometimes to pinpoint what actually may be helping, if they are. One thing that seems common among typical cluster drug therapies is that if a single drug or combination is not working well enough, a new drug is added without removing anything from the treatment plan. It may be that an anti depressant, or anti convulsive is replaced by a different type. What happens if you are on a beta blocker and a calcium channel blocker and seem to be getting only a 20% relief in your cycle, your doctor may want to add an anti seizure med to the cocktail. Both patient and doctor don’t want to chance losing even that 20% relief and hope to build upon that by adding another type of medication.

This is how people end up getting on 6 or 7 different medications at the same time and still getting minimal relief.

When considering the risk versus reward of relief versus side effects, you need to consider the following. If a medication treats your clusters and gives you 80% relief and there are only a couple of minimal side effects, then it’s easy to determine whether or not you want to continue on that drug regimen. But if you are on two or three or more medications and getting less than great results, its more difficult to make those risk/reward decisions. Take a good look at the total side effects you are experiencing and also the possible long term effects, and compare the totality of the effects to the relief that you are getting. It may cause you enough concern to ask your doctor about switching things up a little.

Currently Available Treatments

Over the counter & Doctor supervised

D-3 Regimen

The complete guidebook on alternative treatments can be found on our new website, ClusterHeadacheAltTreatments.org.

Even vitamin treatments can cause issues if not carefully added to your body. An example that many cluster patients have is that many of us use magnesium and sometimes in pretty large doses. You should be aware though that if you use magnesium for extended periods and especially at large doses, you should also be taking an equal dose of calcium. So, talk to your doctors about anything you will be putting into your body.

Some people have had great and lasting results with using the D-3 Regimen. Others have partial results and can make other treatments more effective. Others have given it a try with not very effective results. This is like most other things, there are little tweaks that can make it more successful for some. This is like just about everything else in that everyone is different and there will usually be some adjustments that make it better for each individual.

Prescription Medicines and Treatments

Oxygen

So important that it has it’s own expanded section here.

The first and most effective abortive treatment that everyone should try first, is high flow oxygen. It should be the first words out of your doctor’s mouth following the statement diagnosing that you have cluster headaches.

Oxygen as an acute treatment for cluster headaches

Bob Wold - 07/15/2025

When you have been diagnosed with cluster headaches and after the doctor has explained the basics that come with the condition, the first thing that he or she should say is, “and I am prescribing high flow oxygen as your front line acute treatment.”

Oxygen has been an extremely effective and safe treatment for cluster headaches for over 50 years. That said, there is often a disconnect between the effectiveness of this treatment and both getting it prescribed and getting it covered by insurance.

People that routinely have their cluster attacks last an hour or more, are often able to treat and end an attack in ten minutes. Anyone suffering through an attack can attest to how much that shortened time span can mean.

We encounter many cluster patients that come to us stating that they had tried oxygen and it didn’t work for them in the past. When we work with them, they almost always are able to make it the most effective acute treatment they have. Once its working for them, their tanks and set ups are the most valued asset.

There are several long used oxygen protocols that are prescribed by doctors when they write a prescription. One of the oldest protocols calls for a flow rate of 7-10 LPM with a non-rebreather mask, for 15 minutes. Many others still start their prescribing at 9 LPM (Liters Per Minute)

Some doctors continue to use this out of date protocol. If they continue to work with the patient and increase the flow rates they are able to sometimes come to a rate that is successful. Unfortunately, the problem with this old protocol is that many patients start and end with trying 7 LPM and think that 02 doesn’t work for them. They then go years or a lifetime never giving 02 a chance again.

We at Clusterbusters recommend prescriptions be written for a minimum of 12-15LPM. Most medical supply companies that supply home oxygen do not have regulators that go higher than 15LPM. You can start at a 12LPM flow rate and dial it up if it’s not working well enough. Dial it up if you need a higher rate to be able to breathe quickly and deeply enough to provide relief.

If this regulator does not supply a large enough flow rate for very effective treatment, ending an attack in 15 minutes or less, we suggest the patient locate a new regulator online and purchase this regulator. Order one that fits your tanks supplied by your 02 supplier.

Best breathing techniques can vary but each individual should test out different procedures until they discover which one is best for them.

Getting the basics

There are some simple guidelines that need to be followed to be able to get the best results and little details that aren’t followed can mean the difference between success and the failure of the treatment.

The prescription should be written to include the following details:

100% high flow oxygen for cluster headaches
12-15 LPM flow rate
Supply with non-rebreather mask

When you have the prescription in hand, google a local medical supply house that delivers medical grade oxygen. They will need to prescription to fill your request.

If your insurance company doesn’t want to cover the oxygen, you should still request the prescription and ask your doctor to help you get them to cover it. Medicare finally approved payment for high flow oxygen for treating cluster headaches, after a 10 year battle. Medicare coverage is handled by 4 different regions. Reports are that all 4 regions have been approving it but if you get a no from your supplier, you may need to do some work. Ask your prescribing physician to help you out.

The larger supply houses will know what is usually sent for cluster patients but you may need to do some work getting what you need.

Order both “E” tanks and larger tanks, either “M” or “H.”

E tanks are portable and will allow you to not have to worry about having to miss birthday parties or the Sunday Football game with the guys.

The larger H or M tanks aren’t portable but can treat many more attacks.

The number of attacks per month you are expecting will determine the number and sizes of the tanks you’ll need delivered.

The E tanks will also require a different type of regulator than the larger tanks. Your supplier will know to bring different regulators.

There is a specially designed mask just for cluster headaches that makes a big difference. If you don’t want to order a new mask, you can tape off the holes in the sides of the non-rebreather mask that came with your set up. The quickest way to end an attack is not allowing any room air into the mask.

If you need to pace during the attack, tell the supplier that you need a 30 foot airline.

In addition, for best results, rather than using a standard non-rebreather mask, we suggest patients order a new mask online. These are available at clusterheadaches.com for a reasonable cost. These masks do not have any vents on the sides and provide an airtight, comfortable fit. It’s called a Clustermask and was designed by a cluster patient that was a respiratory therapist.

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

If you have cluster headaches, oxygen can be your best friend. If you need to fight for the prescription or your insurance company, it is a fight worth fighting.

There are a few basics while using the oxygen set up once you have it.

Cut the rubber strap off the mask so that you don’t fall asleep with the mask on. The attacks are so draining that its very common to doze off once the pain has receded. Besides wasting the oxygen, you don’t want it running and strapped to your face while sleeping. It will saturate your clothing with oxygen. It’s not flammable but is an accelerant. You don’t wan to be lighting a cigarette with clothing saturated in oxygen. There is additional discussion on the safety of using high flow oxygen for extended periods of time, on the attached supplement pages.
Start on the oxygen as soon as you feel the attack beginning. Do not wait. Breath deeply and quickly, emptying your lungs on exhale.
Always keep flow rate high enough to make sure the attached bag never deflates completely but low enough to not waste extra oxygen. Lung capacity and rate of breathing will determine how high you need to set the flow.
It’s best to use a regulator that goes up to 25LPM or use what is called a demand valve. This “demand” type of valve does not use a bag to collect the oxygen but allows direct flow from the tank for as deeply and quickly you want to breathe.

Once you have the initial set up, there are a few tricks that can really boost the effectiveness.

Sit up straight or slightly bent forward if you are using in a seated position. This allows your lungs to expand fully and inhale as much fresh 02 as possible.
Breathing can be done in two or more ways. Some people prefer to breath a bit slower to help relax and to help stay calm during the attack. Still breath deeply and exhale completely. Others have the best results by breathing as quickly as possible, nearing hyperventilation. In this case its still important to breath deeply and exhaling completely.
There are many theories regarding what the process is that aborts the attack. One that seems most likely is not the increase in blood/oxygen ratio as this is very difficult to make much of an change no matter how much you inhale, but the elimination of carbon dioxide by flushing it out with pure oxygen. Another possibility is the elimination of nitrogen which is also in the air we breathe.
If you still have not completely eliminated the attack after 15 minutes, it is still safe to stay on the oxygen until the attack ends. There is no fear of side effects or any type of damage caused by staying on 02 for an extended period. If you can’t get complete relief and an end of the attack after 15 minutes, it’s not a problem to stay on for 30 or 45 minutes until the attack ends.
If you have problems with attacks seeming to occur soon after aborting an attack with 02, you should be sure to stay on the 02 for a few minutes after the pain is completely gone.

Additional information can be found on our website www.clusterbusters.org in the resources section. Included are ordering instructions for regulators as well as finding the proper 02 mask.

Visit our video database to view videos that demonstrate the proper use and tips on breathing techniques.

For those interested in digging a bit deeper into the use of oxygen, it’s safety and some of the science behind trying to understand why (or why not) high flow oxygen, there are two oxygen supplement pages.

Scroll down to End section on Supplements for these additional pages on Oxygen

Some miscellaneous tips & notes on conventional prescription medications.

When discussing any medications, whether they are prescription, over the counter or natural remedies, it is important to remember that old adage we’ve all heard before, “everyone is different.”

Some people are able to treat their cycles with low doses of medications and others need much higher doses before getting to a therapeutic level. This does not seem to have any correlation with the length or severity of their cycle. Some people can stop a cycle that that is very severe with a low dose of a preventive. Others have much less severe cycles but need very high doses of anything to get any relief.

Abortives - Acute Treatments

A. Imitrex and the other triptans

Personally I am not a fan of Imitrex and have mixed feelings. It’s a bit like having a relative you can’t stand but is the only one that will watch your dog for a week while you go on vacation.

Yes, it is effective and there is no doubt that it has saved many lives over the years. In the throws of an attack and having an injection sitting there offering relief, it’s difficult to leave unused.

On the other hand, as it has been proven through studies that it can make cycles last longer and add to the frequency and intensity of attacks.

See: http://www.clusterheadaches.com/cb/yabbfiles/Attachments/Subcutaneous_Sumatriptan_and_rebounds.pdf

But if that is your choice of abortives, there are things that can make things a little better and at the same time a little safer.

Standard injections of Imitrex work the best for cluster headaches. The pills are about useless for aborting an attack as they take too long to get into your system. If you are going to use these injections, the standard dose in the injector is 6mg. It has been found that 2mg of the injections are enough to abort a cluster attack. So you are able to actually treat three times as many attacks with however many injections you are prescribed or your insurance will cover.

There are two ways around this. One is to bastardize the injector and use a Q-tip as a plunger and just inject 1/3 of the liquid at a time. There are instructions for this on You Tube as well as more detailed info on the cluster site: clusterheadaches dot com.

The other way is to ask your doctor to prescribe vials of Imitrex. You can get a small vial and empty syringes and you can measure out 2mg doses that way.

B. Opiates

For every 1 person that these help for any extended period of time, there are 99 that range from no relief to devastating results. They do not work fast enough to treat an attack. Taking them on a round-the-clock basis provides very little relief and will most likely end up as first building a tolerance to them and ending up addicted. They will also block many other treatments that you may want to try along the way.

They can also lead to rebound headaches that make everything worse in the long run. Not only can they trigger more cluster attacks, they may end up adding Medication Overuse Headaches, so in between your clusters, you have another headache disorder to deal with. You can forget any clear thinking in between your cluster attacks and can lead to a spiraling downward.

If you get referred to a pain management clinic, they will try to treat your clusters with pain killers of some sort and this rarely helps, even in the short term. Please be careful. Yes, they have helped some people, I get it.

C, Nerve Blocks (Transitional)

Nerve blocks that may be offered may contain steroids but not all do. These can possibly help if done properly and are usually most effective when used in conjunction with other therapies. The blocks will wear off. Specialists are getting better at these blocks as time goes on. Find one that has experience blocking for clusters.

D. DHE - 45

Dihydroergotamine is in a group of drugs called ergot alkaloids. It works by narrowing the blood vessels around the brain and affects blood flow patterns that are associated with certain types of headaches. Ergots have long been used to treat headaches, including clusters.

It comes in three forms. You can get prescribed injections that come in a vial and then you draw the solution into syringes. They aren’t prefilled like Imitrex.

There is also a new auto injector coming out in 2025

It also is available in a nasal spray form and is called Migranal. See below at D.1.

The nice thing about these products is that they usually provide longer lasting relief than the triptans. There are side effects that need to be discussed with your doctor prior to using. The bad thing about them is that for some reason, even though they’ve been around for many years, the prices if these have skyrocketed over the last couple of years. (See additional info further down in this document)

Thirdly, some headache clinics and specialists offer an in patient IV treatment with DHE. This is often suggested to break a particularly long or bad cycle. It changes a bit from clinic to clinic but is most often a 3 to 5 day hospital stay. It often will break the cycle while you are on the IV and sometimes a little extended relief. In almost every case, the cycle will return although there is a chance it can end an episodic cycle early.

D.1. Migranal (DHE) Spray

This is available as a generic and has been around for many years. It has become very expensive (as have many generics for some reason). There are also shortages of it from time to time. Because of the high prices and reimbursement schedules, some pharmacies may not carry it. Many doctors, including headache specialists, won’t prescribe it for clusters due to it’s ergotamine base structure. There are many co-morbidities that can make DHE and ergotamines not as safe as sumatriptans, for some people. Discuss all your health issues with your doctor prior to using.

Again,it is an Ergot derivative so all the warnings that go with ergotamines should be followed.

What is good about this versus the triptans is that this spray can work better than the triptan sprays and also, it can give you much longer pain free periods than the triptans. An Imitrex shot may only help one attack during the day and you may still have more attacks to get through that day. Its much more likely that if this helps you, it can give you 24 hours of relief. So if you’re used to having 6 attacks a day, it can eliminate all of them, unlike Imitrex.

E. Lidocaine drops.

You need a prescription for this but it is pretty cheap and can help sometimes. For clusters you need a 4% solution and it is applied using an eyedropper. The instructions for its use can be found on our website and it is very important that it is done properly or it won’t work.

It is a way to apply a treatment similar to an SPG block that you can administer by yourself.

It’s an abortive in the form of an anesthesia that can sometimes help you get some sleep. Lidocaine sprays do not help. Don’t waste your time.

The trick is to take a dropper full, lay down on your back, on your bed, with your head over the edge, tilted backward and downward, head tilted about 30 degrees toward the side of your cluster, and insert the liquid. You want to bath the nerve ganglion located in the backside of your sinus cavity with the liquid.

F. Ketamine Nasal Spray

Prescription only

Yes, Ketamine is listed here because it is not a classic psychedelic and it is used by some doctors. It can be prescribed, and is prescribed.

This one is in the fairly early stages of testing although some headache specialists have been prescribing it now for a few years. It has shown some signs of success for some people but it’s use needs to be monitored closely by the prescribing physician. There are some possible serious side effects if used improperly. If there is one important thing to remember about this drug, it is that it should be used “sparingly” and this can lead people with clusters down that slippery slope we often find ourselves. Clusters themselves don’t come upon us in a sparingly fashion and when we find something that works, it’s difficult not to use it as often as the attacks command.

G. Ketamine topical cream

Prescription only

This is available through compounding pharmacies and is usually rubbed into the area where the nerve ganglion is located on the back of the neck. Often described as the cluster lump.

H. Ketamine Infusion - Inpatient

Usually done only as an in-patient treatment, this is now being offered by some clinics and physicians as an out-patient option. Clinics are still determining the best dosing program and length of stays and number of treatments. Check with the clinic about their success rates before making any decisions on entering the program. There is definitely a difference with in-patient programs between cluster and migraine ketamine treatment plans and programs with many designed for treating more mental health related issues. Be sure to determine if the program you are considering is well trained and program specific for cluster headaches.

See Addendum One below for an expanded discussion on Ketamine if this topic interests you.

Preventives

1. CGRP’s - Emgality _ Eli LIlly

This is a rather new prescription treatment that was developed specifically for cluster headaches and not a migraine treatment hand-me-down. The molecule involved is the same one used for migraine but because of clinical studies done to test and develop specifically for cluster patients it was determined that cluster patients needed three times the amount of medication required to treat migraine.

This is a once every 28 day injection which is a total of three injections per treatment. This change in dosage is extremely important and you need to make sure that your doctor is prescribing the “cluster headache” dose (three injectors) and not the one injector dose for migraine.

This has proved very effective for many cluster patients. It often takes until the 2nd set of injections to start to show effective results. Don’t give up on it early. It’s also know to make treatments like high flow oxygen more effective while on the Emgality. So, it O2 wasn’t working well before, be sure to give it another try.

More detailed information can be found on our website as well the Eli Lilly website. You may need to work on your insurance company to get it covered. It’s something that your doctor may be able (or needed) to help with getting coverage.

2.Anti Convulsants:

Topamax.

Often prescribed, rarely successful at a dose low enough to lead a normal life IMHO. Some people are able to tolerate it without too much of a problem but many end up agreeing with it’s nickname of Dopymax. You need to start out at a low dose (<100mg) and slowly titrate upwards to a therapeutic dose. I have seen some people go as high as 400mg per day and not only forget where they left their car keys, but forget where they left their car.

Tegretol.

This is rarely prescribed anymore and has been replaced by newer drugs that have fewer side effects. It’ll depend upon how old the book is that your doctor is using to find treatments.

Neurontin.

This one was starting to be prescribed very often when it was being touted as a cure-all for everything from arthritis to stubbed toes. Once again it usually ends up being prescribed at very high doses because you’ll start at a reasonable dose and then keep upping the dose in hopes that more will work better. Odds are it won’t. It’s also prescribed along with other drugs as a cocktail for clusters.

3. Calcium Channel Blockers

Verapamil.

The most often prescribed preventive and the most effective. This is another one that people start out with relatively low doses and continue to build until you reach a therapeutic dose. Many people end up as high as 1200mg. It is taken every day and there are some side effects that need to be considered. If you have low blood pressure you’ll either have to avoid this one or be very careful.

You’ll also need to find ways of countering the constipation. This is one of the medications that “can” produce fewer side effects but even this one can cause problems. You need to watch your blood pressure. Some people can get some relief at lower doses like 120mg or 240mg per day. Others have been known to require up to 1200mg for some relief. But the higher the dose the worse the side effects usually. Some people are able to tolerate a therapeutic dose without bad side effects but others have bad issues. One of the worst to deal with on a daily basis can be the constipation that comes with this medication. If you’re going to be on it long term, you’ll most likely need to find a way to fight that.

There are also a couple of serious heart complications that can arise and EKG testing is essential in keeping ahead of any serious health issues. If your doctor isn’t ordering regular EKG’s, demand them or demand to get off this med.

4. Anti Depressants:

SSRI’s

There is a long list of AD’s that are used and they may help more with the depression that can set in with clusters than helping with the clusters themselves. Some people, like with most everything, can see some help with these but again, they are always prescribed as part of a cluster cocktail making it impossible to know what, if anything, is helping at all. Your doctor is most likely prescribing these looking to specifically treat and help your cluster headaches as there is some indications that these med’s can help with pain transmission. So, don’t be offended,thinking the doc thinks it’s all in your head and treating your mental health. Most of them know that the best way to treat any mental health conditions you may or may not have, will be best treated by treating the pain of clusters. “If you want me less depressed doc, fix my pain.”

5. Lithium:

Lithium has long been used as a preventive treatment for clusters. It is pretty much ineffective for episodic clusters but has been effective for some people that are chronic. Dosages are fairly high and it will take some time to get used to it and get past a lot of the side effects but these side effects can level off after a while. It is a very powerful drug and side effects can be substantial.

6. In-Patient treatments

DHE Infusion

This treatment is done as an in-patient treatment plan and can last 4-5 days in most cases. It consists of being hooked up to an IV that drips DHE into your bloodstream. It’s most often prescribed and suggested for people that are stuck in a very bad and prolonged cycle and it hopes to break the cycle. In the very least, it’s hoped to at minimum give you a 4-5 days break from attacks. The time that it extends past ending the treatment and heading home, varies from patient to patient. Once again, it can also help make other treatments more effective once you get home.

Ketamine Infusion (See Addendum One below for details)

Anti-Histamine Infusion

This treatment is possibly still only used at the Diamond Headache Clinic.

It is an in-patient treatment that consists of a near two week long stay at their facility in the hospital they are affiliated with and usually has their own wing.

You go through about 24 bags of histamine solution. The purpose is to keep a steady flow of low dose histamine running through your system to build up an immunity to the histamine that is naturally produced by your body. Histamine desensitization.

It can break a cycle and has been successful for many cluster patients over the years. Diamond developed this treatment protocol. They are located in Chicago.

Transitional treatments

These treatments are used in an attempt to slow down or stop the attacks long enough for preventative treatments to start taking effect. Many of them need to build up to a therapeutic level in your system before they will start working. These transitional treatments are not meant to be taken long term.

A.Prednisone & Steroids

These are normally prescribed as interim treatments to try to cool off a cycle while other medications can be built up in your system to a therapeutic level.

Sometimes for episodics a short burst can hold down the attacks until the cycle comes to its natural end.

I understand the desperation people can feel at the height of a brutal cycle and how these types of medications can help get you through a particularly bad time in your life.

The doses used to treat clusters are very high on the scale of dose amounts for such powerful drugs. People that require them on an ongoing basis for such things as chronic respiratory disease may be prescribed 5mg per day. Cluster people are usually starting at 60mg or 80mg. Side effects at these doses can be extreme. These aren’t limited to physical effects. You may find yourself in fits of rage. You may find yourself not only wanting to eat everything in the refrigerator, but you may want to actually eat the fridge itself.

Long term effects if you use these treatments too many times can include severe joint issues due to Avascular Necrosis (bone death). Your soft tissue organs are also not safe long term.

Never stop these treatments cold turkey. You must slowly lower the dose as you end the prescription.

The adrenal glands, specifically, the adrenal cortex, are the organs that reduce or stop producing their natural steroid hormone, cortisol, when someone takes prednisone for a long time.

Prednisone is a synthetic corticosteroid, very similar to cortisol. When you take it over a long period (especially at high doses), your body sees there's already plenty of steroid around, so the brain reduces its signal to the adrenal glands to make cortisol. That signal is a hormone called ACTH (Adrenocorticotropic Hormone), which comes from the pituitary gland in the brain.

If you suddenly stop taking prednisone after long-term use, your body might not be able to make enough natural cortisol right away, because the adrenal glands have gone “asleep” from disuse. This can lead to a serious and potentially life-threatening condition called adrenal insufficiency.

An ACTH stimulation test (often done using a synthetic version called cosyntropin) is used to check how well your adrenal glands respond to ACTH.

Here’s why it’s done:

To test adrenal function after long-term steroid use. (80mg tapered down over time is long term use.)
To see if your adrenal glands have "woken up" and can make cortisol on their own again.
To help decide whether it's safe to stop prednisone or reduce the dose.

During the test, they give you an ACTH shot and then check your cortisol levels at specific time intervals (like 30 and 60 minutes later). If your cortisol rises properly, your adrenal glands are functioning. If not, they’re still suppressed.

Unfortunately I have spoken with many clusterheads over the years that had been on long term use of prednisone and had a terrible time after getting off of it, and had never been directed by their doctors to have this ACTH shot and testing. If you’ve had this happen to you in the past, you should confront your doctor if it’s the same doctor that last prescribed your prednisone about this or if it’s a new doctor, make your experience known if they want to prescribe prednisone for you.

There will be additional documents provided with this handbook that describes additional information that explains why we are all different. Why we all need to find the treatment plan that best fits you as an individual and what this process entails for you.

Links to additional information on the above topics as well as additional research and information can be found on the Clusterbusters website.

Things that don’t work so don’t bother. (Bob’s Opinions)

When I say they don’t work, here is my explanation. Some people may get short term relief and others may seem to get longer term results. Most or all of this can be easily attributed to a few things. There is a placebo effect, even with cluster headaches. Yes it may seem hard to believe but it is true and has been proven through numerous studies.

There is also the confusion caused by the very nature of cluster headaches. Episodics go in and out of cycle, making it difficult sometimes to determine if the relief is from a medication or from a natural cessation of the cycle. With chronics, there are also high and low periods within the year. Most often caused more by seasonal changes than medication effectiveness.

When people say that something was working and then stopped, this change is likely to have been caused by either the fact that the medication was never working and it was a natural change in your cycle, the placebo effect wore off, or the medication had thrown your system off its natural course for a short period of time and your brain found a way to get back on it’s malfunctioning course.

1. Inadequate Oxygen.

Using a nose canula and a concentrator does not work. It won’t work to abort an attack and it won’t work if you’re thinking that if you hook yourself up and try to use it during the night to try to get sleep. The high flow oxygen treatment does not work by raising your blood/oxygen levels. Everyone’s is about 98% as it is, unless you have another serious problem. Details on possible reasons for it working or not working vary from expert to expert.

2. Daith Piercings.

Yes, this was all the rage for a while.

You can pierce your ears or any other part of your body and you will not affect the cluster headaches in any way. This is still on my list only because it is a perfect example of the sorts of things that pop up regularly as we all try everything we think may help or hear that helps others.This one was all the rage for a while. I believe it started with the migraine community as they also go on deep searches for help.

3. Massage Therapy

This is not going to help your clusters in any way and could trigger an attack.

What it can do is help release some of the tension in your shoulders and neck area and help you feel a little better. It’s also possible for that short time alone taking care of yourself to help you deal with the mental stress. You again have to be careful though about the stress reliever being a trigger. There seems to be a couple hundred different types of massage therapies. They will all have the same results. This includes Shiatsu, Reflexology, Reiki and Craniosacral therapy. This one especially, Craniosacral therapy is actually known to trigger attacks pretty constantly. If they help get you through the mental end of this condition, that’s fine. In my opinion, donating that hour of your time, working in a soup kitchen for the poor will help as much or more, and you’ll save a hundred dollars. But there isn’t a price for getting an hour break and relieving all the tension that clusters can bring.

4. Acupuncture & Acupressure

Don’t, just don’t bother. (yes, just my opinion)

5. Biofeedback & meditation

Again these relaxation techniques may help with some of the stress involved in clusters but they may be a trigger more often than not. See massage therapy. Most sites that offer Biofeedback for headache disorders will warn cluster patients that it is more likely to trigger an attack than treat the clusters. If you are being seen at a practice that doesn’t warn you of this beforehand, they probably don’t have a good handle on treating cluster headaches.

6. Chiropractic

Don’t, just don’t bother. For those that appreciate this treatment, it can be helpful in loosening up those tight neck and shoulder muscles, and we all know how tight those can get during a cycle. Probably best choice would be to set up an appointment with the massage therapist in the Chiropractic office and get the help they can provide and skip the bone cracker. (Just my opinion. One size does not fit all.) Also, reference the section on massage above.

7. Electronic pulse devices

Example: TENS units.

Many people have tried them over the years. Myself included. I would put the pads on the back of my neck and increased turning the voltage up to maximum and my and my neck would convulse and then lock in place so that I could not move, and the clusters would continue unabated. I resorted several times to do what they warned me not to do as it would be dangerous, and put the pads on my temples and the electric shock would move across my brain from temple to temple. The clusters continued unabated.

Never worked for me or anyone else that reported trying these devices.

This is different than the treatments that are provided with the devises such as Gamma Core that works on the Vagus nerve in the neck.

Addendum One

Ketamine Treatments (expanded version and discussion)

This starts with a description with their migraine treatment plan but be patient, that part explains all the reasoning and how this info related directly to the cluster treatment plan.

Ketamine at Jefferson

By Katie M. Golden & Myself and Numerous contributors

Thomas Jefferson University Headache Center in Philadelphia, PA has a five-day inpatient ketamine program for those with chronic migraine. Ketamine is a general anesthetic medication usually used in emergency patients, in surgical procedures, as well as in veterinary medicine.Its use has increased widely in recent years as a promising treatment for depression, PTSD, and pain management.

At a therapeutic dose, Jefferson has found ketamine can reduce the severity and frequency of migraine attacks. Everyone responds differently and expectations should be managed. Sometimes the positive effects are not felt until days or weeks after discharge, while others may not respond until after two or three hospitalizations. For some, a challenging migraine cycle is aborted during their first ketamine treatment!

I (Katie) have been living with chronic, intractable migraine since 2011. The head pain and other associated symptoms of a migraine attack are with me all day, every day. Since 2014, I have personally gone to Jefferson for their inpatient ketamine treatment at least once or twice a year. I notice a significant decrease in my daily pain average within two to four weeks. Around the six-month mark, I can feel the effects starting to wear off.

Besides psilocybin, it has been the most effective tool to manage my chronic migraine disease.

Here are some important things you should know about being on a constant IV drip of ketamine for five days in a hospital setting:

You do not have to stop taking any medications, as they will be administered during your stay. Based on your treatment plan, you may be given additional IV medications such as DHE, Zofran, Benadryl, Compazine, and Magnesium.

The pain management team works with the attending headache specialist to administer ketamine. The dose you receive is based on your weight - approximately 1 ml per kg. (For example, 130 lbs = 60 kg. So 60 ml of ketamine is typically the highest dose you would receive). However, the ketamine is titrated over the first two to even three days based on how well the medication is tolerated. It is increased by 5 ml - 10 ml at a time.

As the dose of ketamine increases, there are multiple side effects you could encounter. Ketamine is considered a synthetic hallucinogen and a dissociative drug. In my first inpatient hospitalization, the nurse said the first 5 ml increment of ketamine would feel like I’ve had a martini on an empty stomach. At 10 ml it would feel like I’ve had three martinis, and as it increases I’ll start to feel disassociated - like I’m floating above my body.

After day one, you’ll be considered a fall risk. You’ll have to call the nurse to help you to and from the bathroom. It’s a pain, but it’s for your own good. If you can, try hard to take a walk around the halls daily with a nurse.

You may experience vivid dreams, double vision, feeling like you are floating above your body, difficulty speaking, visual disturbances, anxiety or paranoia. If any of these symptoms are too difficult to handle, tell your nurse immediately as the amount of ketamine can be turned down and/or a dose of Ativan (or equivalent) can be administered to help counteract what you’re feeling.

You will receive a prescription of compounded nasal spray to use at home after being discharged. This helps me when my pain starts to spike. Just be very careful of how much, when and where you use it!

Other helpful tips for having the best experience while you trip on ketamine for five days:

Go in with a positive attitude. Be open to the experience. Communicate all your feelings and questions with your care team.

You’ll have your own room and bathroom. The set and setting of being on any hallucinogen is very important. I bring personal items to dress up the room and feel more at home. I have music on, I use essential oils, I bring a blanket from home, I have adult coloring with me, and I bring my comfiest clothes.

Stay off social media! Honestly, leave your computer at home.

You’re never too old to need your mom. Typically, my mom and a friend split staying with me during the day. My memory is hindered and I forget a lot, so it’s nice to have someone with you who can take notes or advocate on your behalf.

It takes a few weeks after being discharged to really feel the effects. So don’t be disappointed if you’re struggling when you go home. It will get better.

Jefferson recently started a cluster headache specific treatment program. Here are the facts concerning cluster treatments vs. Migraine

Specifics follow

1. What are some specifics on the treatment protocol for clusters.

It’s really not fundamentally different from how we use it in other headache syndromes. For the inpatient infusion, the pain management service has a dosing schedule that is weight based. Usually the infusion starts at 10 mg/hr and then is adjusted up or down by the pain team, sometimes a few times in a day, depending on how well it’s working and how well it’s tolerated. The max dose is 1 mg/kg/hr. This is still considered a subanesthetic dose.

The infusion is for a maximum of 5 days. We check baseline liver enzymes and monitor these through the stay. With the nasal spray, we all have our nuances with how we counsel patients to use it. My personal practice is to have them start with 1 spray at a time every 15 minutes until there is relief or mild inebriation. From there, once they have a sense of how the medication affects them, they may increase to as many as 3 sprays in each nostril every 5 minutes. We generally set a limit on use to 2-3 days/week and 20 sprays per day.

Each spray has 10 mg of ketamine in most cases. Sometimes we write it for a concentration to deliver 15 mg per spray, but you can’t get much more than that to stay in solution. In all cases, we of course caution patients about the mind altering effects and all the safety concerns that go along with such a controlled substance. Especially when inpatient, we strongly advise that they don’t make any financial decisions, conduct any business, use social media, or talk on the phone with people who don’t know them well and don’t understand the effects of ketamine.

At home, they have to be responsible with it, both in terms of their own personal use and keeping it out of the hands of others. All patients must sign a treatment consent before getting ketamine in either form. It’s worth noting that the results an individual gets from the IV vs the nasal spray can be very different and are not predictive of each other.

2. If there are differences between treating a chronic patient vs episodic

Not fundamentally, but mostly it’s those with chronic cluster headache who need this level of treatment.

3. What is allowed as acute treatments during the protocol?

In the hospital it’s basically just the ketamine and oxygen. Outside of the hospital, a triptan or DHE is usually ok in addition, with the caution that blood pressure could become elevated. We would not recommend ketamine in combination with any psychedelics.

4. How quickly (or long) the patient can see positive results. Or is this very different from patient to patient.

Yes, it varies quite a bit, from zero benefit to significant, rapid, lasting improvement. I think we have some patients who were chronic that reverted to (or finally got to) an episodic state from the inpatient treatment. It doesn’t take long to determine if the nasal spray works acutely at home. I personally have not had any patients try ketamine at home as a bridge to shorten a cycle, but others may have.

5. A few additional comments from the doctors:

If we see a patient with cluster who is struggling there are several factors that might make us consider ketamine IV rather than outpatient psilocybin treatment.

These include

Disability/unable to work.
Unstable mood - one of patients stopped his antidepressants abruptly to try psilocybin which didn't go well. Ketamine proved more effective.
Other serious pain disorders (ketamine tends to help)
Unable to travel or obtain psilocybin

Another open question is if ketamine nasal spray is the best option after the hospital. In some cases, ketamine helps to get our patients out of the danger zone/cycle that they are in, and previously effective treatments start to work again.

A big thank you for those that helped pull this section together. I greatly appreciate your input.

Opinions, Facts & Observations

Bob Wold

Volume Three: Living Life With Cluster Headaches

Before getting into some discussions on life with clusters, let’s chat about a couple of the more mechanical issues we have to deal with that can interrupt our day to day lives.

There are many different options available today. Some of which you may have tried and others that are new. There is more research going on right now for cluster headaches than any time in history. Some brought to us by medical science, some still in the research stage that you can participate in, some that have been developed by what is known as “citizen science” (The cluster headache patient community itself) and some being developed by medical device manufacturers. New options, some coming out of labs, some from nature, some from medical engineers. We have always searched for hope to keep us going. I can report honestly and tell you that there is more reason for hope for a future of better treatments, easier to find qualified doctors, a more educated public (friends and family), then ever before in history. We have made more headway in the last 15 years than at any point since cluster headaches were first noted in medical journals in the 1600’s.

It is these sorts of things going on in the background and should be always kept in mind when contemplating your situation.

Some miscellaneous tips & notes on conventional prescription medications.

When discussing any medications, whether they are prescription, over the counter or natural remedies, it is important to remember that old adage we’ve all heard before, “everyone is different.”

Some people have much more severe cluster cycles and attacks than others. Just as some of our attacks are 10s and some are 2s, some people have cycles that are 2s and some have cycles that are 10s. One thing no one should ever feel obliged to do is either justify their pain levels or minimize the suffering they endure. No comparing is allowed. You have what you have and others have what THEY have. Some people will get cycles that are worse than they’ve ever had before and some will experience cycles that are possibily shorter than usual or not as severe attacks. Some may have good treatment plans that may not work as well for their next cycle. All in all, all we know is that we all have cluster headaches and they are never less than life changing and the fear of the next cycle is always there. We have the same levels of fear.

All that said, this is true, many symptoms can be different from one patent to the next, severities may differ but the totality of the cluster diagnosis is terrible and difficult to live with.

Some life issues we end up dealing with day to day.

1. Going to the dentist?

If you’re going to have dental work done, and need a shot of Novocain, ask for the injection without the Epi. Epinephrine can induce a cluster.

It’s also a great idea to teach your dentist a bit about clusters and that the dentistry profession misdiagnosed more than 40% of clusterheads and had dental procedures done hoping it would help your headaches/toothaches before being properly diagnosed. Teach your dentist for the next person and they can also help educate others in their profession. Toothaches do not happen every night at 3am and last just 45 minutes, EVERY NIGHT. Then go away completely until another hits at 2:00 pm for 45 minutes, and quickly goes away completely.

This can actually be true about something you can do for the community and for those yet to be diagnosed. We are out there trying to educate the entire medical and healthcare system on everything from diagnosing clusters, to helping them learn how to help us gain access to treatments. Finding medical supply houses that can provide oxygen or other medical devices. Help getting prescriptions filled and approved by our insurance companies if we are lucky enough to have insurance.

2. Getting out. Don’t be afraid to travel.

If your insurance company covers 02, your supplier can most likely have 02 waiting for you at a hotel you are staying. Just call and ask for a rep that handles travel plans. They’ll work out a deal with a local supplier. Bring your mask and regulator with you on your trip.

It’s true that air travel can trigger an attack.

People have also had some luck asking the flight attendants if they can get you an oxygen tank while you’re in flight. They can ask the captain for permission. They will have a tank onboard for emergencies. It’s best to have a chat before taking off or shortly after take off and leveling off and have that talk before you try asking when an attack starts. They will need to talk with the pilot for permission.

If you use something other than oxygen for treating an ongoing attack, pack it in your carry on and keep it handy.

It’s not easy to get past but try not to let the fear of cluster attacks make you cancel life activities. It’s bad enough when attacks do ruin an outing but try not to let fear make you cancel. You’ll end up cancelling a lot more activities than you would have had to.

Cluster used to be called “executive headaches” because many people working stressful jobs would be fine all week and then the clusters would hit during weekends, when the person would relax. It’s a matter of adrenaline keeping the clusters away sometimes. Going on an adventure or a graduation or birthday party just might be something to keep some of those attacks away.

3. Pain is inevitable; suffering is a state of mind and is optional.

One of our biggest complaints as cluster sufferers is all the things that they take from us. Jobs, relationships, important events etc.

Don’t let fear take away more than the clusters would have taken on their own.

If you think about the best times of your life, it’s a collection of memories. A collection of moments. You can still have those moments in between the attacks, before the attacks, and after the attacks. You need to go get them.

Consider when you’ve been asked things like, “how was your vacation?” You rarely describe a trip in totality. No one wants to look at 100 pictures on your phone. But they will look at a couple of those special moments.

You mention a long string of fantastic moments. Maybe just a few moments. That 1/2 hour fight you had while fishing and landed that fish you have mounted over your fireplace. If describing your family trip to Disney World, you mention how excited your child was to meet Mickey Mouse. The great meal you had on the Riverboat.

You can still have all of these moments, even if your day is interrupted by clusters. Hopefully you have some reliable abortive. Your family would prefer to have you with them with your oxygen tank than be stuck back home by yourself.Whatever the case, you can always pick yourself up and head back to the beach to where your family is hanging out and build more moments.

A. Marriage & Relationships

50% of marriages end in divorce. 99.9% of those do not have clusters in their lives. It’s “only” about one in every thousand marriages have clusters in their home. Life is hard..It’s hard for everyone that doesn’t have the added burden of cluster headaches.

When we in the community complain that someone has left us because they weren’t strong enough or care enough to stay because of the clusters, this diminishes the wonderful people that do stay regardless. Leaving is the normal response. Staying and supporting is the exceptional response. Your caregiver deserves the respect they’ve earned through their dedication to caring for you and not giving up.

We did some research long ago that showed that 29% of cluster relationships end due to what they felt were caused by the diagnosis of cluster headaches. I think that sometimes it’s the clusters just push things in life over the edge. Relationships are rarely easy for anyone and it takes work. Clusters certainly do add a lot of stress into any relationship.

If you aren’t one of those rare couples that find each other because of their common clusters headaches, then neither person knew what they were signing up for when they pledged to be there for each other for “better or worse.”

One thing that is true after meeting cluster families for almost 30 years, is that when someone is diagnosed with cluster headaches, that diagnosis doesn’t just cover one person, a cluster diagnosis affects the entire family. The family is diagnosed with cluster headaches.This information isn’t anything new for you to be told about. You’re all living it every day.

B. Jobs & Workplace

Everyone loses jobs. No one stays anywhere for 35 years anymore. It’s long been suggested to change jobs every three years if you want to make the most money and rise up in any field.

Everyone has trouble holding a job because everyone has personal issues. Not only are there ways of making a living, especially in today’s cyber world, your goal should be to make a “life” not a living.

If you’re having trouble at work with getting them to accept your health condition and they don’t appreciate having to make accommodations, this is certainly a widespread issue for us and has been this way the first time someone gave someone else a job and had to pay them. It happened even if they weren’t paying them and were slaves and owned by their bosses. In today’s job market, many people are still treated in this way. It seems to be getting even worse. So, don’t be thinking that it’s all because of your clusters.

Tell them that you have a plan and stick to the plan. Keep them updated on changes ahead in treatments. Let them know that you’re doing more to not only continue to be the good employee that you are but you and your team have a plan to be even better. It’s best for you to have a positive attitude about the future and you should be sharing with them, the positivity of getting better over the long haul. Tell them that there will be ups and downs but you aren’t going to let the downs eliminate the ups. Let them know when you find some relief with a new treatment plan. Let them know when you hear about new research coming down the road.

Your mental heath and physical health will always be best if your have a positive attitude. This should also be the attitude you bring with you to work.

Yes, I know that this is easier to say than to do. Remember that I’ve had clusters for 45+ years. Two cycles a year except for the 5 year period where I was chronic. The ups kept me alive through the downs.

I keep a note in my wallet that a friend slipped into my wallet years ago. It’s quite tattered. All it says is “It’ll get better. It always does.”

C. PTSD & your mental health

A big part of understanding these issues is accepting the fact that cluster headaches very often cause severe “PTSD symptoms.” The fears we deal with are not something that we can easily get over. Just as we should never just expect a soldier coming home from war to “just get over it” we shouldn’t expect ourselves or those we support to “just get over it.” PTSD is PTSD. Reach out for help. Keep reaching out until you find that help.

Surround yourself with supportive people.

Society oftentimes teaches us to believe that it shows weakness to ask for help. It’s not a weakness, it’s a necessity and displays more strength than weakness.

Research going on currently looks at something like cluster headaches as producing what is actually now called Complex-PTSD.

Complex because the trauma that is causing the PTSD is actually still occurring, day after day and from one cycle to the next. It’s not caused by one particular traumatic event. It’s not an attack on the battle field or car accident or an event that is over. It becomes pretty complex to treat if the trauma is still occurring. This PTSD still exists in between cycles. We all have the fear about the next cycle. So, this is closer to regular PTSD as it is what we are dealing with after a cycle ends. But, it’s also more complex. Most people with PTSD suffer from it because it is POST the trauma event and the fear of it happening again is real but in most cases, that traumatic event isn’t going to happen again (yes I realize that for some, they too will suffer similar events unfortunately) the odds are that we will be be visited by that traumatic event again, even if it’s a year away. It;s not something that we can try to avoid. This isn’t any situation that we can refuse to allow happen again.

D. Tips to treat your clusters as well as your mental health

Build a plan. Write it out. As i talked about above, share it with the people in your life, like your boss and family. Write it out for yourself and be as committed to that plan as you are to living a good life and beating this atrocious disease. Let people know that you’ve got a plan to get better and stay more healthy. Did you previously like to go jogging or go to the gym? Have you stopped? Set a plan to get back into doing those things that were important to you. The plan does not have to be, “tomorrow I’m running that marathon.”Maybe it’s just walking around the block. Drag that O2 tank with you. They make two wheeled dollies to drag it behind you. You and your family will be happy that you are dedicated to getting back into shape. Or happy that you’re working toward getting back on the water to go fishing. Reintroduce yourself to your passion. It’s important to work at being as healthy as you can. It’ll provide strength to get through your cycle. Most of us have vices that make it a less than healthy lifestyle. I’m told that a pack of cigarettes and two POTS of coffee every day isn’t the best healthy lifestyle. I do know that whatever we do day to day needs to be as healthy as possible and sometimes we have to be healthier than others in different ways to make up for our bad decisions. (See Addendum 1 below in this section for additional discussion on this)

E. Let’s talk some more about your mental health

Clusterbusters has learned a lot about mental health when it comes to people (and families) that live with cluster headaches in their lives.

Once you are stricken with clusters, you’ll have mental health issues whether you are chronic or episodic and in or out of cycle.

One of our biggest fears and that adds to our traumatic events is to have our caregivers and family and friends bear witness to our trauma and not being able to help in any meaningful way. To counter that belief a bit, let me just say that just being there for us, and knowing they are there for us, IS helping in a VERY meaningful way. I can say that everyone that is in our cluster community and is the one physically dealing with clusters, greatly appreciates not only their own caregiver but has complete respect and admiration to all the caregivers in our community.

We are like fans of a symphony. We may have our favorite musical instrument on stage but love the sounds made by the entire ensemble.

Clusters are known as producing self inflicted isolation. One of our first instincts is to hide our attacks as much as possible so that people close to us don’t have to witness our attacks. We know it’s a traumatic event for ourselves and want to keep that trauma away from people that care for us. It is traumatic knowing ourselves that there is little that we can do but we also know that they too will have those feelings of helplessness.

After speaking with literally thousands of caregivers, I can attest to the fact that no matter how you may try to prevent it, your caregivers are also going though a traumatic event even if they don’t see you. What helps with that trauma is to see you recover from it and get up and enjoy the time you can spend with them.

F. Community

We are here for you. If you are tired trying to explain yourself to family or friends or your boss, reach out to someone at Clusterbusters or a friend from the community. One of us will be more than happy to have a chat with them and will “bring the receipts” to the discussion.

If you’re not too sure this would help or that no one would want to do that for you, sign up for one of the zoom support calls and bring the subject up.

Volume Three - Addendum 1

Bob Wold - 07/15/2025

Living with Cluster Headaches

Recovery & Mental Health Considerations

Grief is something we deal with if you live with cluster headaches and it’s something that you deal with personally and your family is probably also dealing with, both on an every day basis. Dealing with loss is something that we have to address continuously and that we are constantly reminded of on a daily basis, especially if we are in an active cycle. Have we lost our favorite hobby? No more golf? No more fishing? No more family vacations? If you don’t work at healing and recovering from this grief, it can consume us. This sort of loss and the resulting grief sometimes requires learning to live with this loss and heal. Other times you can find yourself with a loss that you can overcome completely and other times you are able to make some adjustments or work on a plan to recover the loss. Just because you may have temporarily lost something important to you, this doesn’t make the grief you feel isn’t real. It is something that still must be overcome.

This section takes a look at setting up a plan to overcome a common loss that many of us feel. It also has some ideas that can be used to help heal from other types of losses in your life. We all have different things we’ve lost and can try to regain by setting up some goals and steps to achieve them.

Frustrated that you think you are too out of shape to get back into shape? Was going to the gym on a regular basis something that was very important for you? It is something that many of us do, or did. Finding yourself in this position can impact many different parts of our lives that we think we’ll never again be able to have.

Dealing with physical ailments, depression, and anxiety, getting back into the gym can be a challenging but highly rewarding journey. It’s important to approach this process gradually and thoughtfully, focusing on both physical recovery and mental well-being. Here’s a top 10 plan to help you re-engage with working out while focusing on improving his physical fitness and mental health:

Yes, you can put these sorts of suggestions into just about anything that you feel you’ve lost. Did you love to go jogging every day and haven’t been able to get out there for a long time? Find a plan to return to the plan you had for yourself. If you were running 5 miles a day and it was the best time of every day for you, it’s time to get back out there. You weren’t running 5 miles a day when you started. Depending on how far you’re able to start with will depend upon how long you’ve been off. The reason that you are so sad that you’ve seemed to lose that time working on yourself, is because it was so important to you. Maybe more important than you ever thought. If you have to start off walking around the block, just remember how wonderful it used to feel to run 5 miles and remember the work that it took to progress to that 5 mile distance. It wasn’t easy but the fight to get there was part of the joy it gave you. You can feel that joy again.

I can’t relate to why anyone would get joy out of jogging or running on a schedule.. The most running I would do would be running to catch my friends about to take off in a boat and that I wanted to join them to go fishing. I can relate to the joy I’d feel when I made it to the boat. There is joy to be had when we meet a goal.

If you haven’t been able to join your friends for the yearly fishing trip to Lake Erie, don’t despair. Don’t give up on it. I’ll bet there are lakes nearby that you could set up a road trip with a friend. If getting your boat or your friends boat onto the water, you can probably rent a boat. Hire a guide. Park Districts in local towns often offer fishing events for people to bring out their kids. Maybe it’s just shoreline fishing. Start somewhere and get your line into the water. Build confidence that you are able to work out a plan to turn short trips into longer trips. I took my E tanks onto many a boat and I never tossed an E tank into the water but I tossed a lot of great lures.

I mentioned fishing because it’s a great example of building a plan to recover what you feel that you’ve lost.

I understand that there can be important loses that are impossible to recapture. Maybe it can be blamed on your clusters. Everyone has these types of loses that we need to find a way to move on and recover. Our lives evolve constantly. My kids will never be 12 years old again. But I now have grandkids that have been 12 and more that will be 12 in the future. Even with clusters, you can find joy in life and it’s something that you need to go out and get it. Put yourself out there to be around when joy can find you.

Let’s take a look at a plan that you can modify to meet your needs for getting back something you’ve lost, temporarily.

1. Start with Small, Achievable Goals

Yes, you may have to start over from the beginning but you’re proff that you can do this. This is the way you started and you’re missing not only how you’d improved yourself but you’re missing the process. You can restart your process.

Set realistic and incremental goals to avoid feeling overwhelmed. Instead of aiming to return to a daily, intense workout right away, start with something as simple as working out 2-3 times a week for 20 minutes.

Physical Goal: Increase workout duration or intensity by small amounts each week.
Mental Goal: Celebrate every success, no matter how small, to build confidence and reduce anxiety.

2. Focus on Consistency, Not Perfection

Avoid aiming for perfection; the goal is just to show up. Consistency is key to overcoming mental barriers. Some days will be harder than others, and that’s normal.

Set a regular time each day to work out. This will help make it a habit, rather than a decision each day.

3. Address Mental Health First

Incorporate mindfulness or meditation before or after workouts. Even five minutes of deep breathing or meditation can help reduce anxiety and improve focus.

Consider journaling thoughts and feelings before or after working out to track mental shifts. This can help keep a clear perspective on progress.

4. Build a Workout Plan with Low Impact Movements

Start with low-impact exercises to avoid exacerbating physical ailments (e.g., walking, cycling, swimming, or yoga). Gentle strength training with lighter weights or bodyweight exercises like squats and push-ups can be great starting points.

Gradually increase intensity only after feeling more comfortable and noticing physical improvement.

5. Set a Workout Schedule with Flexibility

Structure the plan, but allow for flexibility. Life happens, so if a session needs to be rescheduled or canceled, don’t feel discouraged.

Build in rest days to prevent burnout and to allow your body to heal, especially if recovering from previous injuries or physical discomfort.

6. Find Enjoyable Activities and Variety

Avoid pushing for monotonous workouts if they aren’t enjoyable. Try new activities that might reignite his passion for fitness.

Examples: Group fitness classes (virtual or in-person), hiking, dance workouts, or martial arts. This could help boost motivation by finding something fun while working on fitness.

7. Incorporate Social Support or Accountability

Having a workout buddy or a support network can help with motivation and accountability. Even if this is just an online fitness group or a personal trainer, knowing someone else is expecting you to show up can help maintain discipline.

If not ready to work with a trainer, start with a virtual workout group or a close friend to help keep spirits up.

8. Focus on Both Physical and Mental Benefits

Keep a log or use an app to track both physical (e.g., reps, sets, weight lifted) and mental (e.g., mood, anxiety levels) progress.

Mental Goal: "I will notice how I feel post-workout—do I feel happier, less stressed, or more energized?"

Recognize that physical health supports mental health, and vice versa. Celebrating both aspects of progress can encourage long-term adherence.

9. Seek Professional Help for Mental Health

Regular counseling, therapy, or even medication may be helpful to manage anxiety and depression while making physical progress. A therapist can help work through mental blocks related to returning to the gym. Maybe there is a friend or family member that can provide that sort of support. Did you have some friends that you made while doing this activity in the past? Don’t be surprised if they are still out there and still wanting to share some of those same walls that you both used to help each other over, or around? Honestly, as a fellow clusterhead myself I can tell you that if you are feeling shame or embarrassment about your current state of affairs and are worried about re-establishing those old friendships, this is a self inflicted wound. If you are blaming yourself for the state of your health, you are most likely the only one thinking that. And if anyone does feel that way, they weren’t a friend. They were only an acquaintance. It only takes 15 minutes to find a new acquaintance. Walk up to someone that you think is interested in the same thing that you are, walk up to them, stick out your hand for a handshake and say, “hi, my name is XXX. Sorry to interrupt (if you are interrupting) Nice to meet you.”

Consider seeing a physical therapist if the physical ailments are preventing full recovery or worsening symptoms. They can design a specific rehabilitation plan.

10. Celebrate Milestones, Big and Small

Set up a reward system for achieving fitness milestones. Whether it’s hitting a specific weightlifting goal, completing a full week of workouts, or simply getting out of the house for a walk, reward the small wins.

Examples: Treat yourself to a favorite healthy meal, a new workout gear, or something that brings mental peace (e.g., a relaxing bath).

Sample Weekly Routine for Mental & Physical Health

Monday: 20-minute walk (focus on mindfulness) + light stretching
Tuesday: Rest or gentle yoga (30 minutes)
Wednesday: Strength training (20-30 minutes) with light weights or bodyweight
Thursday: Meditation (10 minutes) + light cardio (e.g., cycling or brisk walk)
Friday: Rest or group activity (e.g., fitness class, swimming)
Saturday: Strength training (30 minutes) or home workout
Sunday: Active rest (hiking, easy stretching, or sports activity)

By staying consistent, gradually increasing intensity, and allowing room for mental health support, you can rebuild his connection with fitness while improving your well-being.

Important Reminders:

Be kind to yourself. There will be tough days, and it’s crucial to not let setbacks define the journey.
Focus on progress, not perfection. Both physical and mental health take time to improve, and every step forward is significant.
If things feel overwhelming, consider professional guidance to ensure the plan is appropriate for your specific needs.

With the right plan, the journey to physical and mental health can be empowering. It’s not just about getting back into the gym—it’s about rediscovering joy in movement and the profound benefits fitness brings to the mind and body!

You can apply this sort of plan to just about every type of loss you may be feeling. Adjust as needed. Maybe you need to adjust from slowly increasing the amount of weight you lift to slowly increasing the time you spend out on the water. Is fishing your loss? I feel your pain. Were you loving spending time on the water on Lake Erie? If you check around, you’ll probably be able to find a small lake reasonably nearby. Worried about getting an attack while out on the water? Not much different from getting the attack at home. Bring a couple E tanks with you. There are other ways of making sure you can be out these for a period of time without getting an attack. Trust me. Even if you are in cycle, you can take an acute treatment with you. Bring with you a set up for a rod holder. If you get an attack, set your pole into the holder and pick up your clustermask. You can start on the pier if you have to. Movies have been made about catching large fish from the pier. Ever see the old movie, Raymie? Catching Old Moe? It’s a forgotten classic.

Opinions, Facts & Observations

Bob Wold

Volume Four: Research & The Future & Hope

If you think you’ve tried everything and there are no new options, you’re wrong.

There’s also alternative treatments. You can check out my full volume on these treatments at clusterheadachealttreatments.org

I’ll chat about “side effects” a little more in a different volume.

The following is a list of options you may want to consider and keep an eye on in development, in no particular order.

Keeping up to date

Things are moving quickly so this is just today’s happenings. Be sure to keep up on what’s happening on our website and visit us at our next conference. Speak directly to the doctors and research teams working on finding new and better treatments.

Research & Clinical Studies

There are several studies going on or in the process of starting soon and Clusterbusters is involved in many of them.

I would suggest signing up for our patient registry so you will get all the latest news and info on upcoming clinical studies. This sign up can be found on our website at www.clusterbusters.org

This where you will always find new updates on what is in the process and what is still in the thinking stages.

Patient Registry

As announced at our conference in September, we have several clinical studies in the works. Some of which will most likely be asking for study participants within the next 9 to 18 months.

These studies involve genetics and one involving the psychological burden of cluster headaches. Information about ongoing research into alternative treatments can be found on our new website, ClusterHeadacheAltTreatments.org.

Anyone wishing to participate in these studies should be registered in our Patient Registry. In some of the studies, all participants will be invited strictly from those that are on our registry.

Clusterbusters and our community funds and operates many of our own studies. Studies that others can then also take up and build upon.Some of these clinical trials will have study sites outside the United States as well as within the US.

This is an international registry and we are looking for people from every country to sign up. A couple of these studies in particular will be looking specifically for people living in the UK, Germany and Canada. Please share this information with anyone you may know residing in these countries.

E. Various Studies in process and yet to have been officially announced.

We are actively working with numerous companies in early stage development of new treatments. Everything from new Neuromodulation devices to new molecules being studied to treat cluster headaches specifically by pharma companies. At least two of these will be announced by the end of 2025.

Keep Scrolling 😉

Opinions, Facts & Observations – Issues confronting cluster patients when trying to get from access to proper diagnosis to access to “available” proper treatments.

Volume Five: Gatekeepers

Prelude:

It has been a 25 year journey trying to get better recognition and better treatment for cluster headache patients. There has never been a day that we haven’t found new gatekeepers standing in the way of everything from education to the development of new treatments and finally fighting for access to these treatments. What good is coming up with a good idea and spending years and millions of dollars developing help for our community if in the end, they can’t get access to it?

The current state of the evolution of our society and the existing healthcare systems (different in every country) seems to keep us all marooned on an island and having no one that will allow us to book passage to the mainland.

We have found that there are literally thousands of people that have the power to put their stamp of approval for our application for a passport needed to book our passage to relief.

In this volume I will list out some of these gatekeepers and what it takes to get us past them to find relief. We find ourselves standing in more lines to nowhere than we would find ourselves having to wait in line at the DMV, every day.

Section 1. Getting a proper diagnosis.

Yes, this is usually the first hurdle we must get past. Getting a proper diagnosis. The main issue here is the education needed that simply does not exist within the majority of our healthcare systems. It’s not difficult getting a proper diagnosis IF you happen to get lucky enough to find a physician that has been educated in headache medicine and learned the differences in the nearly 200 different headache classifications. Only one of those will teach about how to recognize and diagnose cluster headache. Most of us can diagnose another cluster sufferer after asking only a handful of questions. Five minutes asking a few questions and looking into the eyes of a cluster patient.

I was misdiagnosed for 4 years by many professionals. Eight cycles that all had lasted 3 months. Two years worth of days in cycle.

It took a headache specialist 10 minutes to utter the words for he first time hearing them, that I had something called cluster headaches. 10 minutes after 4 long years suffering from the worst pain known to mankind. 4 years on my hands and knees begging for help.

Here’s a few of the gatekeepers that I ran into while working my way to that diagnosis. I’m sharing this just as examples of what we all seem to go through unless we are very lucky.

My family doc, who I had for 40+ years, thought that I was getting some sinus infections (or something sinus related). After putting me on several medications and making them stronger after each visit and reporting no relief, the cycle would eventually end on it’s own and we would both think that we had finally found the cure. We didn’t.

When the clusters returned, we worked with what we thought was the key the last time I went into cycle and work from there. Three months later we though that we had again finally found the cure.

The next cycle I started exploring for someone else, another “expert” and would go through the same ritual. Who’d I see? A dentist. Teeth getting root canals and then extraction. A chiropractor. That didn’t work and we thought it was a brain tumor. Saw someone to get a C-scan to find the tumor and it wasn’t there. Good news? Not really. Still didn’t have any answers. Then on to a pain specialist. Went on heavy opiates. That was useless.

Went to a neurologist. Finally an expert. I was then getting medications designed for treating epilepsy.

There were other’s along the way.

Finally I went into a headache clinic and was told ten minutes into the appointment that I had an obvious case of cluster headaches.

Here was the case to be made that a long list of doctors and other professional healthcare providers needed some education.

There are over 1,200,000 licenses physicians, dentists and chiropractors, not to mention all the other specialties like acupuncturists, in the US alone. There are less than 1000 headache specialists in the US in total. What are your odds of finding one of them?

In 2018 there were 15,000 Neurologists in the US. Most of them have only heard about cluster headaches in passing. It’s believed that they only get about 1-2 hours of education regarding headache disorders and remember, there are close to 200 different headache disorders. As a result, almost every woman that sees a neurologist with cluster headaches is first diagnosed with migraine. Mistreated sometimes for decades as having migraine.

Issues:

A. Finding the right doctor

Clusterbusters is in the process of building a list of qualified doctors that know how to diagnose and treat people with cluster headaches. It’s not easy. If you ask them, they all know. We know that isn’t the case at all.

Look for someone that has been referred by another cluster patient and look for, to start, a headache specialist.

B. Understanding the basics of what lies ahead

It’s not just educating the professionals. It’s also educating the patients. You need to know what symptoms to convey to your doctor that are important.

There are some basic symptoms that all need to be explained. Missing one or two can complicate the diagnosis. If you have these, tell them. Don’t let them cut you off and make assumptions before getting them to write them all down in your medical records. Everything that goes in, or doesn’t go in, will have major implications for decades.

A few of the major points to be made, for everyone of you see.

1. Even though your attacks come and go all day and all night, you should not explain that your attacks last ALL DAY. You need to make it very clear that even if they last all day, they come and go. It’s not one long headache. You aren’t in that pain all day. There are definite breaks between attacks.

Know one ever has a bad toothache that comes on every day at 2:00 pm or 4:00 am every day and only lasts one hour. Then goes away completely. You need to make those breaks known to whomever yo are talking with.

By revealing these breaks, you aren’t minimalizing your pain. By telling them that it “only” hurts three hours a day does not minimalize your pain and suffering. But it will differentiate you from getting diagnosed with everything from a toothache to a migraine to tension headaches.

2. Be sure to mention the autonomic features if you have these.. This is the reddening and watering of one eye on the side of the pain. The droopy eye on that side. The running of your nose, on that same side.

3. If you’ve been through a cycle or more and now you’re heading back into another, make that known and detail when these past cycles took place and for how long. Once again tying your clusters to the hypothalamus in your brain. Mention anything that relates to the timing during the day/night and timing of seasons.

4. Tell them that describing your pain level is difficult. There are no words in the English language that can describe the pain, both physical and mental pain.

They may show you a chart that shows 5 smiley faces and ask you which one fits your pain level. Yes, you can get mad, or laugh at them. Tell them that society does not allow for the faces you’d make an emoji to describe your pain to be published on public forums.

5. You need to be honest about your pain. You do not need to be asking yourself if you are really in this much pain or are you just a whiner and weak. The fact that you drop to your knees and cry does not make you weak. It proves your strength in being able to survive such pain. That is the attitude you need to walk in for your appointment and express to them.

6. This thought of weakness creeps up upon all of us starting with the first attack and feeling the impact of your pain upon your family. Does your family feel like you are letting them down by not being strong? Are we letting them down?

I can honestly say that after speaking with thousands of caregivers, one of their biggest regrets is not being able to fully explain how impressed they are with your strength and are certainly not seeing weakness. They aren’t hiding the guns and knives in the house because they think that you’re weak. They do it because they love you and care about you.

Last note on this subject about the lack of education we need to deal with and fight against.

I recently went through chemo and radiation and immunotherapy for cancer. After I started treatments, and on a monthly visit with my oncologist, he asked me how I was doing. Well, I said, I’m fine except that the chemo was triggering my cluster headaches and it looked like I’d be in cycle until chemo ended. I wasn’t complaining, just sharing. I wasn’t angry, just answering his question.

His response, was this. He was saddened and offended that he was trying to save my life and I was complaining about “headaches.”

I didn’t apologize but I just moved on with the conversation. I wasn’t up for trying to educate this doctor. I didn’t mention how offended or disrespected I was feeling.

Section 2. Getting proper treatment plans

Issues

A. Oxygen

This is the first thing that your doctor should be prescribing for you. High Flow oxygen with tanks, high flow regulators and the proper mask. Even some headache speialists resist prescribing oxygen properly, if at all. This is something you need to demand and the doctor’s office staff needs to be prepared to fight all the gatekeepers you’ll find along the way in getting oyxgen tanks and the proper set up delivered to your home.

We have a deep collection of information about oygen and getting psast the gatekeepers on our website.

B. Don’t be your own gatekeeper. See volume 3 Build a plan

Section 3. Finding support

You need to reach out to other sufferers to find people that understand without having to explain yourself. The best way to find your community and how important they can be in your life is to actually show up at a Clusterbuster’s Patient Conference that happens every year. It’s incredibly important to both you and your caregivers. They are every bit as invested in your care as you are and come up against the same feelings of helplessness that you have. They also need community support that looks at all of this from a different perspective. You aren’t the only one that feels misunderstood.

Section 4. A partial listing of gatekeepers you’ll find along the way.

I’ve learned that an entire list of them along with a description of how and why they stand in the way, would take a very long book to be written.

Diagnostics

All those that misdiagnose you and keep you from getting a proper diagnosis and treatment plan. The millions of professionals standing in the way because of lack of education or empathy.

Insurance

Many different individuals and company departments that keep you from getting insurance to pay for the most important treatments. The more effective they are, the more expensive they are, if having to go through insurance. There are different agencies that also play a roll in what gets approved and what access we may get, and at what cost. There are agencies that look at a new drug and decide if the price that the pharma company wants to charge, is fair. If they decide it’s not worth it, the drug may still get approval but it’ll probably never be approved to be covered by insurance. There are many gatekeepers along this road to access.

Legislators

We make a trip to Washington DC every year to fight against all the laws and regulations that stand in the way of getting care. This is not just keeping us from new alternative treatment options but also many options that could be available through your pharmacy or medical device manufacturers.

Medical supply companies

All those that make it difficult or impossible to get home oxygen. They all like to only prescribe home O2 concentrators. They can charge monthly and only have to delivery once. Many will not provide specifically to cluster patients. This in one reason that sometimes our best friends are providing us with Welder’s oxygen.

Regulatory government agencies.

There are many agencies that stand in our way. From Medicare and Medicaid to the FDA, the DEA, the many Governmental agencies that regulate other industries from Insurance companies to pharma companies. Different agencies regulating our healthcare availability for the many different communities. Dozens if not hundreds of gatekeepers depending on whether you live on a Native American reservation of if you’re poor or if you live in one state or another. I could make a long list of all the different gatekeepers in different government agencies with federal agencies multiplied by state and local agencies. Within each agency there are dozens of desks that reform and improvements in care land on throughout any change.

There was once a lawsuit against the DEA about signing off on an approval for a new drug that showed great promise. The DEA was only charged with the requirement to sign off on the application so that they were aware of this new approval. By charged with, I mean that was their only responsibility in the process, to sign off and move it along.

They were then charged with having to sign off based upon the laws and regulations. They lost and were instructed to do so by a federal court. The DEA representative told the court that, ok, yes, we will sign off on it, BUT, there is nothing in the regulation about how long we have to sign off on the approval and that if he wants to, (and he wants to) it will sit on his desk for 8 years or as long as he wants. This was almost 20 years ago and the approval was never signed. It’s still sitting on a desk on Washington DC.

Universities

Found at all levels of higher education there is never enough education into any of the steps involved in providing proper care to headache patients. Never enough hours spent on educating any of the various professionals we will find standing in our way. It’s always hit and miss. Many times it may end up being a Nurse Practitioner at a provider’s office that knows more about cluster headaches than even the resident neurologist. Always talk to everyone you meet at your doctor’s office.

Research

Oh so many gatekeepers. From FDA to the NIH for funding new research. it’s always cheaper to say no. It is so expensive to conduct research that very few people or companies see a profit at the end of a long road when all they see are 300,000 possible customers and most of those don’t use medications other than certain times of the year. Cut the number of customers in half or more because they are “only”in cycle and needing medications for 3 months out of each year.

Universities gather up all sorts of patent rights in the beginning and then sit on them until they are convinced that they will make money down the road. It takes a while and a lot of screaming to get them to dedicate their list of research teams to something that has a small patient population.

The list is long and I’ll add more with future updates.

What you can do is help us educate all these gatekeepers. Go back to those that misdiagnosed you and tell them that they fell short for you and you hole they can properly diagnose the next cluster patient that walks into that dentist office, or general practitioner’s office. Don’t be afraid to write an email to your past chiropractor’s office. If we don’t educate them, no one else will and someone else will join our community 20 years after being misdiagnosed by them.

Supplement Pages: Oxygen

Bob Wold 07/15/2025

High Flow Oxygen Supplement #1

Traveling with your Oxygen Tanks

Safety Concerns

Combustion hazard: Oxygen is not flammable but causes other materials to ignite more easily and burn more intensely.
Pressure hazard: Compressed gas cylinders are under high pressure and can become projectiles if valves are damaged.
Temperature hazard: Heat (from sun exposure or engines) can raise internal pressure, risking a burst disk release or explosion.

Medical Oxygen Travel Checklist For Patients & Caregivers (Auto Travel)

Before You Go

[ ] Inspect oxygen tanks for damage, rust, or leaks
[ ] Ensure label is legible and tank is within expiration date
[ ] Secure enough oxygen for your trip, including a backup tank(s)
[ ] Pack all accessories: tubing, masks, regulators, crank handle(s)

During Transport

[ ] Place tank upright and secure with strap or holder
[ ] Do not place tank in trunk or unsecured on floor
[ ] Keep windows slightly open for ventilation
[ ] No smoking or flames in or near the vehicle
[ ] Avoid extreme temperatures (hot or freezing)
[ ] Ensure valve is turned off when not in use
[ ] Don’t leave the crank device attached to the top of the regulator

Emergency Precautions

[ ] Know how to shut off oxygen quickly
[ ] Carry emergency contact and medical information
[ ] If leak is suspected, exit vehicle, and ventilate well.
[ ] Do not restart the vehicle until cleared as safe

Patient Notes Notes:

Tank Size(s): ________________________________

Regulator Type: ______________________________

Oxygen Flow Rate: ____________________________

Backup Supply Location: ______________________

Emergency Contact: __________________________

You can print this two sided to keep with you in your auto and on trips.

Bob Wold 07/15/2025

High Flow Oxygen Supplement #2

Yes, this is a deep dive into oxygen and much of the information isn’t necessary to know that it’s very important to try to get access to high flow oxygen. But if you ever end up on Jeopardy it may just make you a winner.

Safety and Science discussion to understand why (or why not) high flow oxygen works to treat cluster headaches. This discussion also lays out some of the safety issues with high flow oxygen causes some doctors to worry about prescribing high flow oxygen.

For the patient to be able to discuss high flow oxygen with their doctors, some basic knowledge about the process is necessary. There are facts on both sides of the argument and it’s best to go in with this understanding. One of the main arguments that patients use is that fighter jet pilots stay on 100% oxygen for hours on end during missions. Why the 15 minute cap on cluster patients for at home oxygen?

This is my deep-dive into how breathing works and how inhaling pure oxygen compares to breathing ambient air. Here's a breakdown of the differences, what happens inside the body, and what we exhale.

Ambient (Room) Air: What We Inhale and Exhale

Inhaled Room Air Composition (approx.):

Let’s start with some basic science

Understanding the basic processes of breathing is where discovering why high flow oxygen helps with cluster headache.

One of these basic understandings is knowing how the Alveoli work in your lungs.

The alveoli are tiny, balloon-like air sacs in the lungs where the exchange of oxygen and carbon dioxide takes place — they are the critical interface between your respiratory system and your bloodstream.

Here's what the alveoli do during breathing:

Inhalation (Breathing In):

Air enters the lungs through the nose or mouth → trachea → bronchi → bronchioles → alveoli.

The alveoli inflate with the incoming air, which contains about 21% oxygen.

Oxygen diffuses across the thin alveolar wall into the surrounding capillaries (tiny blood vessels).

Oxygen binds to hemoglobin in red blood cells and is carried throughout the body.

Exhalation (Breathing Out):

At the same time that oxygen enters the blood, carbon dioxide, a waste product of metabolism, diffuses out of the blood into the alveoli.

When you exhale, this carbon dioxide is expelled from the body.

Key Functions of Alveoli:

Function	Description
Gas Exchange	Oxygen in, carbon dioxide out.
Large Surface Area	Hundreds of millions of alveoli provide ~70m² of surface area — about the size of a tennis court.
Thin Walls	Alveolar and capillary walls are just one cell thick, allowing for rapid diffusion of gases.
Moist Lining	A thin layer of moisture inside each alveolus helps gases dissolve and diffuse more easily.
Elasticity	Alveoli stretch during inhalation and recoil during exhalation, helping push air out of the lungs.

Ambient (Room) Air: What We Inhale and Exhale

Inhaled Room Air Composition (approx.):

Gas	% by Volume
Nitrogen (N₂)	~78%
Oxygen (O₂)	~21%
Argon (Ar)	~0.93%
Carbon Dioxide (CO₂)	~0.04%

Exhaled Air Composition:

Gas	% by Volume
Nitrogen (N₂)	~78% (unchanged)
Oxygen (O₂)	~16% (↓ used by body)
Carbon Dioxide (CO₂)	~4–5% (↑ produced by metabolism)
Water Vapor (H₂O)	increased

The main difference: oxygen decreases and CO₂ increases in exhaled air.

What Happens to Air in the Body?

Inhalation (through nose or mouth):

Air travels down the trachea → bronchi → bronchioles → alveoli in lungs. Note the Alveoli 😉

Gas Exchange (in alveoli):

Oxygen diffuses into pulmonary capillaries → binds to hemoglobin in red blood cells.

Carbon dioxide (from cellular metabolism) moves from blood to alveoli → exhaled.

Circulation:

Oxygen-rich blood goes to the heart, then is pumped through the arteries to tissues.

Cellular Respiration:

Cells use oxygen to make ATP (energy), producing CO₂ and H₂O as waste.

Breathing 100% Pure Oxygen (Tank or Mask)

Inhaled Air:

Gas	% by Volume
Oxygen (O₂)	100%
Nitrogen (N₂)	0%
CO₂/Other Gases	0%

Exhaled Air (after breathing pure O₂):

Gas	% by Volume
Oxygen (O₂)	~80–90% (unused O₂ exhaled)
Carbon Dioxide (CO₂)	~4–5%
Water Vapor (H₂O)	still present

Even when breathing 100% oxygen, you don’t use all of it. The body only extracts what it needs (a few percent) and the rest is exhaled.

Oxygen Saturation (SpO₂) Comparisons

Breathing Condition	Normal SpO₂ Range	Blood O₂ Partial Pressure (PaO₂)
Room Air (21% O₂)	95–99%	~75–100 mmHg
100% Oxygen	Can reach 100%	>500 mmHg (temporarily)

Note: Oxygen saturation maxes out around 100%, so breathing pure O₂ doesn’t increase SpO₂ much—but it dramatically increases the amount of oxygen dissolved in plasma, which can be useful in emergencies or with lung disease (or cluster headache treatment?)

What Changes When Breathing 100% Oxygen?

Physiological Differences

Factor	Room Air	100% O₂
Lung O2 gradient	Lower	Much higher (↑ diffusion)
O₂ in plasma	Normal	Significantly increased
SpO₂	Near max (95–99%)	100%
CO₂ removal	Unchanged	May decrease due to lower respiratory drive
Nitrogen presence	Present	Absent → can lead to atelectasis (lung collapse) with prolonged use

Risks of Prolonged 100% Oxygen Use

Oxygen toxicity (especially at high pressures)
Lung damage (oxidative stress)
Suppressed respiratory drive (in some patients with COPD)
Absorption atelectasis (collapse of alveoli due to loss of nitrogen)

These are the issues that concern doctor’s when prescribing high flow oxygen so we will explore the science and the real world evidence in the cluster headache community.

Summary Table

Feature	Room Air	100% Oxygen
O₂ inhaled	21%	100%
O₂ exhaled	~16%	~80–90%
CO₂ exhaled	~4%	~4–5%
SpO₂	95–99%	100%
Plasma O₂	Normal	Very high
Nitrogen	Present	Absent
Long-term use	Safe	Potential risks if prolonged (prolonged isn’t often defined)

Discussion:

Absorption atelectasis can begin to develop surprisingly quickly—within minutes to a few hours—when a person breathes 100% oxygen continuously, especially if they are bedridden, sedated, or mechanically ventilated.

This part is often never stated when discussing the safety issues. It reminds me of the study about possible lung damage that is often cited but rarely points out that the case study cited was regarding a new born baby in NIC U with underdeveloped lungs (hence on O2).

Time Course of Risk for Absorption Atelectasis

Timeframe	Risk Level	Notes
< 30 minutes	Low (in healthy, upright people)	Minimal alveolar collapse risk
30–60 minutes	Moderate	Small airways may start to collapse in vulnerable regions of the lung
1–4 hours	Significant	High risk of alveolar collapse in dependent lung zones
>6 hours	High	Especially dangerous in sedated, ventilated, or post-surgical patients

Why It “May” Happen:

Under normal conditions:

Alveoli stay inflated partly because of nitrogen (which doesn't diffuse across membranes easily).

Breathing 100% oxygen replaces nitrogen in the lungs.

As oxygen is rapidly absorbed into the bloodstream, alveoli can shrink and collapse without nitrogen to hold their structure.

Supporting Data:

Study (Petrini et al., 2002): Even short-term exposure (~30–60 min) to 100% O₂ during anesthesia caused significant atelectasis in dependent lung regions as seen on CT scans.

Anesthesiology guidelines recommend using lowest possible FiO₂ (fraction of inspired oxygen) during surgery to avoid this.

Higher Risk Factors:

Pre-existing lung disease
Obesity
Prolonged bed rest or sedation
General anesthesia or mechanical ventilation
High FiO₂ (>0.8) for >1 hour

How to Minimize Risk:

Use FiO₂ < 0.6 when prolonged oxygen is needed.
Encourage deep breathing and movement post-op or during long transport.
Use positive end-expiratory pressure (PEEP) on ventilators to keep alveoli open.
Administer intermittent room air if 100% oxygen isn’t necessary continuously.

So, how do fighter pilots avoid these safety issues when flying for hours at high altitude

Fighter pilots do breathe nearly 100% oxygen at high altitudes, often for extended periods—but they avoid dangerous effects like absorption atelectasis through a combination of equipment design, flight physiology, and operational limits. Here's how:

Why Pilots Use 100% Oxygen

At high altitudes, atmospheric pressure drops significantly:

Above ~10,000 ft: Hypoxia risk increases
Above 33,700 ft: Even pure oxygen at cabin pressure is needed for adequate blood oxygenation

So pilots use 100% oxygen (or near it) to ensure safe oxygen delivery to tissues.

How They Avoid Absorption Atelectasis

1. Positive Pressure Breathing

High-performance fighter oxygen systems (like OBOGS – On-Board Oxygen Generation System) deliver oxygen under positive pressure.

This keeps alveoli inflated, preventing collapse even though nitrogen is absent.

Positive pressure mimics PEEP used in ICU ventilators to prevent atelectasis.

Think of it like continuously blowing up a balloon to keep it from deflating.

2. Periodic Changes in Breathing Pattern

Pilots often speak, move, and strain, which involves varying pressures in the chest.

These fluctuations in pressure help keep lungs and airways open and prevent stagnation or collapse of alveoli. They keep busy while sitting there.

Note: Cluster patients rarely, if ever, just sit there motionless during an attack and in many cases pace the floor.

3. Limited Duration of High-Risk Exposure

Most fighter missions are 1–4 hours, and extended pure oxygen exposure beyond that is uncommon. On the other hand, it sometimes takes an overnight flight to get from home base to the target thousands of miles away, and home again.

Pilots typically pre-breathe 100% oxygen for 30 minutes before high-G or high-altitude flight to flush nitrogen (to prevent decompression sickness), but they do not stay on high-pressure O₂ indefinitely.

4. High Altitude Increases Demand

At very high altitudes (>40,000 ft), oxygen diffusion gradient is critical.

The risk of hypoxia or decompression illness outweighs the relatively ( officially stated ) small risk of absorption atelectasis, especially when using positive pressure O₂ delivery.

5. Physical Fitness and Lung Health

Military pilots are typically in peak cardiopulmonary condition with excellent lung compliance and strength.

This makes them less vulnerable to atelectasis compared to sedated, immobile, or ICU patients.

Summary: Why Fighter Pilots Avoid Lung Collapse on Pure O₂

Protective Factor	Function
Positive pressure breathing	Keeps alveoli open despite lack of nitrogen
Short mission duration	Limits cumulative O₂ exposure
Active breathing and movement	Helps prevent alveolar collapse
Pre-breathe protocols	Safely purge nitrogen (for 30 minutes) before high-altitude
Healthy lungs*	Greater resistance to atelectasis

OK, granted, maybe most cluster patients don’t have the most healthy of lungs since 80% of us are smokers.

So, why do pilots use O2 masks and a system like OBOGS – On-Board Oxygen Generation System?

Fighter Pilots Use OBOGS + Sealed Masks, Not Passenger-Style Systems

1. Fighter Aircraft Fly Much Higher and More Aggressively than even commercial jet pilots.

Combat aircraft frequently exceed 40,000–50,000 feet altitude and pull high G-forces, often with sudden altitude shifts.

Commercial jets cruise at ~35,000 feet, and are pressurized to feel like ~6,000–8,000 feet.

Fighter jets have non-pressurized cockpits or fluctuating pressures, so pilots need constant and immediate O₂ support.

A commercial oxygen mask is not sufficient in a fighter jet’s high-altitude, high-G environment.

2. OBOGS Provides Unlimited Oxygen In Real Time

OBOGS (On-Board Oxygen Generation System) extracts oxygen from engine bleed air using molecular sieves, delivering up to >95% oxygen on demand.

No need to carry bulky, limited oxygen tanks.

Unlimited mission duration — as long as the engines are running, OBOGS produces oxygen.

Fighter aircraft can't afford to run out of oxygen in battle or rely on stored tanks that limit flight time.

3. Sealed Masks Provide Positive Pressure & Protection

Fighter pilot masks are airtight and provide:

Positive pressure breathing (prevents lung collapse at extreme altitude)
Protection against smoke, fumes, NBC threats (nuclear, biological, chemical)
Microphone for communications
Oxygen delivery at high flow rates needed under stress and G-load

Passenger oxygen masks aren’t sealed — they just drop down and supply a low flow of ~60–70% oxygen (mixed with cabin air) for survival during depressurization.

4. Combat Pilots Need Hands-Free, Reliable, Multi-Function Equipment

OBOGS and sealed masks allow for:

Hands-free operation
Constant oxygen, no user control needed
Integrated communications gear (mic + earphones)
Function under high Gs, inverted flight, ejection scenarios

Commercial oxygen systems would fail under high G-forces or rapid depressurization without cockpit pressurization.

5. Passenger Oxygen Systems Are Emergency-Only

On commercial airliners, oxygen masks deploy only if:

Cabin pressure drops
Passengers need ~15 minutes of O₂ until aircraft descends to safer altitude

These masks flow chemically generated oxygen or tanked oxygen at low pressure, not suited for constant aviation maneuvering.

Summary Table: Fighter Jet vs. Commercial Passenger O₂ System

Feature	Fighter Jet (OBOGS + Mask)	Commercial Jet (Pasnger Mask)
Oxygen source	Engine-powered oxygen generator	Compressed or chemical oxygen
Flow type	Constant, high flow, pressurized	Emergency flow, low rate
Mask type	Sealed, strapped, with mic	Loose-fitting, no seal
G-force capable	Yes	No
Mission duration	Unlimited (while engine runs)	~15 min (emergency only)
Protection	NBC, smoke, + comms	Minimal emergency use
Altitude capability	>50,000 ft	~35,000 ft (pressurized cabin)

My conclusion and some final remarks.

Fighter jet pilots are active enough while strapped into a seat, to keep from alveoli collapse but their oxygen delivery is also under pressure. Cluster patients are pacing around the house and in my opinion their oxygen is also being delivered under some pressure if they are using a cluster mask as it has a positive seal around the mask and it’s flowing at a pretty high flow rate.

There are approximately 1000 home fires a year if we look at ALL home oxygen use. So, this is a reasonable warning about home safety and smoking or other sparks or flames and a good reason to beware of these things happening, especially right after using the oxygen and care should be taken not to allow your clothing to become saturated with the oxygen.

We’ve learned that especially in Europe, it’s very difficult for people to get at home oxygen prescriptions if the patient is a smoker.

Smoking has some connections to oxygen use and home use when talking about cluster patients.

It’s known, through clinical studies, that stopping smoking will not stop your clusters from returning. That said, smoking doesn’t help. It can also cause oxygen to not work as well if you end up with COPD. The biggest spike in cluster diagnosis is with people in their mid 20s. Even if they are smoking, they haven’t yet developed COPD for the most part. For cluster patients, having at home oxygen actually prolongs the life we live by providing a very good acute treatment for our clusters. IMHO, many of us then live long enough to develop COPD. It’s still always a great idea to quit smoking. Take good care of your alveoli.

There is no data on any deaths or emergency room visits for cluster headache patients that use high flow oxygen. None. The only data on deaths with at home oxygen, that includes all types of oxygen delivery (high flow to using a nasal canula at 2 LPM) is connected to people being released from a hospital after a bout of Covid and the deaths attributed to that Covid.

This connection is an interesting point surrounding data collected and attempts to attribute medications that are used for many things, including headache patients, to deaths caused by the medication.

Studies show that Sumatriptan was the “cause” of 92 deaths from 1991-1998. Yes, millions of injections over that time but 92 deaths. There were also 820 adverse events over that period. Most of which would have been reported from ER visits.

That said, none of these deaths were reported as Sumatriptan being the cause of death. Autopsies always end up reporting an underlying heart condition. Then the heart condition listed as the cause of death. So, basically, Sumatriptan causes that many heart attacks. I could write a separate paper on this subject. It’s all about who is doing the reporting and who is directing the final reports on causes of death. What is the cause of death from opioid overdose? The opioid, not the bodies response to the opioid. What’s the cause of death of an FDA approved drug like sumatriptan? Heart failure.

Sorry, back to high flow oxygen. Oxygen, a medical treatment for cluster patients, oftentimes described as a life saving treatment, is an unpatentable drug. No patent, no big money maker.

I have honestly personally spoken with thousands of cluster patients over the last 25 years. People of all ages, from 6 years old to 96 years old. At least 80% of them report good results with high flow oxygen. Many of them smokers (another 80%) and many of them that also have some level of COPD.

I have never heard of anyone having adverse events caused by their use of high flow oxygen. This includes all ages and all levels of lung or heart disease. Zero.

I do also understand that sometimes cluster patients are reluctant to report bad side effects with many of the treatments we use. Especially when there are so may positive reports. They don’t want to discourage other patients from trying them. So there may have been some adverse events that have happened over the years. Maybe someone’s Angora sweater went up in a burst of flames after using O2 and then lighting a cigarette. Poof, the flames didn’t last long but their mustache was trimmed and their Angora sweater is no longer fuzzy. What headline would be the cause of the fire? The match, the cigarette, the angora, the oxygen?

I fully understand our communities reluctance to report bad side effects but it doesn’t help building good data on side effects and the need for more research to find better and safer treatments. But, I get it.

If there is one thing that we clusterheads like is knowing the science behind cluster headaches and various treatments. We are all researchers looking for answers as to “why me?”

All the people and specialties involved in our care, the most important person in the equation is you, the patient. In all seriousness, it’s usually not difficult to become the most knowledgeable person in the equation. The more you know, the easier it is to look for and find a knowledgeable doctor to provide good care. You need to know what you’re looking for in a healthcare provider.

Final word on high flow oxygen and it’s efficacy and safety.

Yes, as you can see by the information above, there are reasonable concerns when prescribing cluster headache patients high flow oxygen. Doctors are trained to “First, do no harm”

That said, IMHO, If you understand the science and the concerns, you also understand your body, your suffering, and your need for efficacious treatments. If they are out there, I want to know. I want to be able to weigh my options. After 25 years of collecting stories, I know one thing. High Flow Oxygen has saved hundreds or more likely thousands of lives worldwide. If it works for us, we would rather people take away our home than take away our O2 tanks. Talk with your doctor and practice safe oxygen use.

The End, for now. Thank you for reading along

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Bob’s Pocket Guide

On This Page

Volume One: Conventional Treatments

Cluster Headaches

Opening statement

Diagnosis and descriptions

Chronic vs. Episodic

Conventional Treatments

Devices

1. GammaCore Device

Prescription Meds and OTC options

Currently Available Treatments

D-3 Regimen

Prescription Medicines and Treatments

Oxygen

Oxygen as an acute treatment for cluster headaches

Getting the basics

Some miscellaneous tips & notes on conventional prescription medications.

Abortives - Acute Treatments

A. Imitrex and the other triptans

B. Opiates

C, Nerve Blocks (Transitional)

D. DHE - 45

D.1. Migranal (DHE) Spray

E. Lidocaine drops.

F. Ketamine Nasal Spray

G. Ketamine topical cream

H. Ketamine Infusion - Inpatient

Preventives

1. CGRP’s - Emgality _ Eli LIlly

2.Anti Convulsants:

Topamax.

Tegretol.

Neurontin.

3. Calcium Channel Blockers

Verapamil.

4. Anti Depressants:

SSRI’s

5. Lithium:

6. In-Patient treatments

DHE Infusion

Ketamine Infusion (See Addendum One below for details)

Anti-Histamine Infusion

Transitional treatments

A.Prednisone & Steroids

Things that don’t work so don’t bother. (Bob’s Opinions)

1. Inadequate Oxygen.

2. Daith Piercings.

3. Massage Therapy

4. Acupuncture & Acupressure

5. Biofeedback & meditation

6. Chiropractic

7. Electronic pulse devices

Addendum One

Ketamine Treatments (expanded version and discussion)

Ketamine at Jefferson

Specifics follow

Volume Three: Living Life With Cluster Headaches

Some miscellaneous tips & notes on conventional prescription medications.

Some life issues we end up dealing with day to day.

1. Going to the dentist?

2. Getting out. Don’t be afraid to travel.

3. Pain is inevitable; suffering is a state of mind and is optional.

A. Marriage & Relationships

B. Jobs & Workplace

C. PTSD & your mental health

D. Tips to treat your clusters as well as your mental health

E. Let’s talk some more about your mental health

F. Community

Volume Three - Addendum 1

Living with Cluster Headaches

Recovery & Mental Health Considerations

1. Start with Small, Achievable Goals

2. Focus on Consistency, Not Perfection

3. Address Mental Health First

4. Build a Workout Plan with Low Impact Movements

5. Set a Workout Schedule with Flexibility

6. Find Enjoyable Activities and Variety

7. Incorporate Social Support or Accountability

8. Focus on Both Physical and Mental Benefits