Opinions, Facts & Observations Book One: Cluster Headaches and Conventional Treatments

Cluster Headaches

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.

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.

Conventional Treatments

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

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.

The following is a list of options you may want to consider, in no particular order.

Keeping up to date

Research & Clinical Studies

1. 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.

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, psilocybin, implanted devices and a couple others including one involving the psychological burden of cluster headaches. We also will keep everyone up to date on the other studies that we are working closely with the device, or research labs.

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.

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.

To register, please go to this link:

https://www.myalchemer.com/s3/6732342/CB-2022

A. Genetic Study
This study will not help with your current cluster headache situation, but may very well help with everyone’s situation in the future. Please consider joining in if you have a close relative that also suffers from clusters and both are willing to participate.

We have started this genetic study and are working with a leading researcher from the U. of Vermont and McGill University in Montreal with one of the best geneticists in the world.
Signing up for our patient registry will start the process of joining this study if you qualify.

B. Psilocybin Study
We have started a psilocybin study at Yale University along with the VA and are currently accepting patients into the study. If you have wanted to try psilocybin to treat your clusters and for any reason haven’t been able to, such as not being able to procure the materials, or have issues because it is still illegal, this is an FDA approved clinical study. You just need to be able to get yourself to Connecticut.

See https://clusterbusters.org/current-studies/new-clinical-study-of-cluster-headaches-investigating-the-efficacy-of-psilocybin-is-now-recruiting-participants/
For details.

C. Eli Lilly
There is one study that is currently closed and we are awaiting it’s approval to reach the market. We are working with Eli Lilly on this and it’s very exciting if it turns out to be as safe and effective as we all believe it to be.

Their product called Emgality is already available for people that have been diagnosed with migraines. Once it is approved, Lilly will be providing discount programs that will allow people to get the cluster treatment for free for up to a year. More information will be available soon.

D. BOL-148: Research, Development
This substance is an analog of LSD and has been around many years. The early study done by Clusterbusters showed extremely impressive results. Further study and development has long been delayed due to the usual drug development issues and not because of its efficacy. Keep your eye on it as we still believe it will be further studied and eventually developed for use. The process for getting FDA approval for clinical trials has begun and we will be keeping everyone up to date.

• “The Non-Hallucinogen 2-Bromo-Lysergic Acid Diethylamide as Preventative Treatment for Cluster Headache: An Open, Non-Randomized Case Series” https://clusterbusters.org/cb/yabbfiles/Attachments/Cephalgia_article_on_Bromo-LSD.PDF
• “Attack Cessation and Remission Induction with 2-Bromo-L SD for Cluster Headache” https://clusterbusters.org/cb/yabbfiles/Attachments/BOL_Halpern_IHS2009-2.pdf

E. Devices
1. GammaCore Device
This handheld device that is produced by a company called Electrocore has been available in various parts of Europe for a while now. 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 improve as its used. The manufacturer is currently running a program where you can get the device to try for free for up to 12 months.

Comments:

Additional 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 (I’ve tried over 70 of them).

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

Oxygen

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 that you have cluster headaches.

High Flow Oxygen for Treating Cluster Headaches

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. 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.

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 are a few basics in using the oxygen set up as a treatment once you have it.

Set the regulator to give you enough oxygen so that the reservoir bag does not completely deflate when you inhale. Lung capacity and rate of breathing will determine how high you need to set the flow.

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. Start on the oxygen as soon as you feel the attack beginning. Do not wait. Breath deeply and quickly, emptying your lungs on exhale.

Stay on the oxygen for an extra few minutes after the attack has ended. This will help avoid a return of the attack.

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

If the 15 LPM regulators aren’t giving you enough oxygen you can order regulators online that will go up to 25 LPM or a demand valve. The demand valve can be worth the extra money because it eliminates any wasted oxygen.

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. 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. If you can’t get a prescription or if your insurance company won’t cover it, there is a DIY work around using welding oxygen.

If you haven’t tried it with the proper mask, at a flow of at least 15LPM, and stayed on it until the cluster ended, then you really haven’t given it a fair shot. If 15LPM doesn’t do it for you, you can try a 25LPM regulator or a demand valve that allows you to breath as deeply and as quickly as possible without emptying the bag. If you are using a mask that has holes in it, tape them off. Do yourself a favor and order a cluster mask asap.

You can order the best available mask here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Besides the mask you need a regulator that will go to at least 15LPM if not a 25LPM regulator. Your doc can and should write a script for a 15LPM regulator and your 02 supplier should be able to supply one to you for any size tank they send you.

If the 15LPM isn’t supplying enough O2 that you can breath as quickly and deeply as possible, without the bag emptying, people have modified their set up by removing the existing small bag and attaching a plastic garbage bag. Allow the larger bag to fill up early on and you should be able to provide yourself with enough O2 to keep up with your breathing.

If not both can be found on Ebay.

A lot of 02 info can be found on our website. www.clusterbusters.org
Click on the oxygen tab in the drop down menus.

Also, although in 2015-16 most people are finding best results using 15LPM as a minimum and many others now using 25LPM, the following abstract shows what people were using in 2008. Something you can print out and take to your doctor. If they are still prescribing based upon 1960 recommendations, they should at least catch up to 2008/2009.

View the Oxygen and Cluster Headache: Results from the United States Cluster Headache Survey.

If you are in the UK, sorting out the oxygen issues with NHS is best done by contacting OUCH UK first.

Oxygen as an acute treatment for cluster headaches

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. 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 protocol is that many patients start and end with trying 7 LPM (Liters per minute) 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.

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. The E tanks use a different regulator than the M tanks or larger.

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

Always keep flow rate high enough to make sure the attached bag never deflates completely but low enough to not waste extra oxygen.
It’s best to use a regulator that goes up to 25LPM or use what is called a demand valve. This 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.
Sit up straight 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.
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. Fighter pilots stay on pure 02 for 8 or more hours without any issues.
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.

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 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

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 our forum post here.

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 YouTube as well as more detailed info on the cluster site: clusterbusters.org. 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. 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.

C. 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.

It also is available in a nasal spray form and is called Migranal. 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. 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.

E. 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. 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.

Preventives

1. 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: rarely prescribed anymore and has been replaced by newer drugs that have fewer side effects.

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.

2. 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. http://www.reuters.com/article/us-verapamil-headaches-idUSSCH37552320070813

3. Anti Depressants:
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.

4. 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 many 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.

5. In-Patient treatments:
1. DHE Infusion
2. Ketamine Infusion
3. Anti-Histamine Infusion

Things that don’t work so don’t bother.

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 canbe 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.

2. Daith Piercings
You can pierce your ears or any other part of your body and you will not affect the cluster headaches in any way.

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. 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.

4. Acupuncture & Acupressure
Don’t, just don’t bother.

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.

6. Chiropractic
Don’t, just don’t bother.

Last Updated: 1 year ago in Clusterbuster’s Bookshelf

Bob’s Pocket Guide – Book One – to Cluster Headaches Conventional Treatments

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