Bob’s Big Pocket Guide to Cluster Headache 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
I would suggest signing up for our patient registry so you will get all the latest news and info on upcoming clinical studies.
As announced at our conference in September 2015, 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: http://tinyurl.com/n9ou73a Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at firstname.lastname@example.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a This registry is different and separate from our mailing list that you may already have joined. Please take this extra step with us in our research and advocacy work in cluster headaches.
If the above link is broken, go here: http://survey.constantcontact.com/survey/a07e97nw2gdhuaj6cau/start
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.
Psilocybin Study We will also be starting a psilocybin study at Yale University along with the VA and hope to start accepting patients in 2016.
Again, everyone on the registry will be notified when this study opens for enrollment.
Eli Lilly There is one study that is currently accepting patients and 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.
I would also suggest seeing if you can get pre approved for the Eli Lilly study. I don’t know if there is a site close enough for you but they can let you know if one is open or if one will open in the future. They keep adding new sites in the US and all over Europe.
This is the link for the Lilly study if you are interested.
Please visit the following site for more details:
If you are afraid of just getting the placebo, rest assured that you will be guaranteed the active medication if you complete the process.
To get to the questionnaire and see if you can take part, you should go here:
This study is enrolling now. Get started here.
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 ATI device is commercially available in Germany, Austria, Switzerland, Sweden and Denmark. There are trials about to open in the UK, the Netherlands and Spain.
The NHF just released a news story on SPG stimulation and chronic cluster headache last week and here is the link: http://www.headaches.org/2015/12/08/cluster-headache-study-seeks-participants. I thought you might find this interesting.
Also here is a YouTube video on Dr. Papay at the Cleveland Clinic who developed the approach to implanting the device.
Currently Available Treatments
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 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.
If you are in the UK, sorting out the oxygen issues with NHS is best done by contacting OUCH UK first.
The three main psychedelic treatments are unique in their mode of action. They are not an abortive or preventive in any of the usual sense. They are not used to abort an attack like the triptans and they are not taken every day like normal preventives. They can sometimes prevent a cycle from starting if taken early enough. They can abort an entire cycle and not just an attack. Yes they can abort an attack or low doses can end a “shadow” but these treatments are not used to replace your present abortives. When used, the object is to treat “the cycle” and not just an attack. The doses that are used are much less than what is usually taken as a recreational dose. They are taken once every 5 days and not daily.
Episodics have been known to completely break a cycle with just a few doses. Chronics usually take more doses and start spreading out the time between doses. Although starting off taken at 5 day intervals, you do not take them every 5 days for ever. The object is to use as few doses as possible, at the lowest dose that works, and work to extend the time between doses until the cycle has broken.
Most of these treatments are all illegal or restricted in some way, depending on where you live. Some things can be easily and legally ordered online.
The following link leads to all the general information on treating cluster headaches with psychedelics. Please click on all the embedded links also as there is a lot of information contained in these documents.
This paper should be read completely and has information that applies to using all the different psychedelic treatments. The most important pages to read are those that explain the warnings about additional contraindicated conditions you may have and medications you may be taking.
Contrary to what you may have heard or are worried about, there is absolutely nothing illegal or troublesome about this document or the information contained within it. As a matter of fact, this 68 page document is copyrighted in the United States and you can find a copy of it to read in the Library of Congress if you ever visit there. You may print a copy for your personal use but it’s use and or publication for any other use must be granted in writing from Clusterbusters Inc.
The first and most often used psychedelic treatment is with psilocybin which is the hallucinogenic substance found in “magic mushrooms”.
These have been used successfully by many people (thousands) for many years.
Most people grow their own which is fairly easy and can be done very discreetly. There are many videos online that will teach you the techniques. You can order the spores (seeds) online and the rest of the supplies can be purchased at garden shops or places like Home Depot.
The type of mushroom spores that are used are called Psilocybe Cubensis. There are many varieties but they are all very similar in the amounts of psilocybin they will contain.
Consider the possibility of investing $100.00 and you can be set up to grow your own medication for the rest of your life. Your pharmacist will be sending you Birthday cards asking where you’ve been all this time.
Ralphsters Spores has been helping people with clusters for many years. You can order spores from their site at:
Premium Spores is another source. Their privacy and security is excellent. They do not retain any records or credit card info. They also take visa prepaid cards. Here is their link: http://premiumspores.com/ Another one for supplies is Midwest Grow Kits. Their system is automated and it comes with a detailed how to guide. Another plus is they will ship to FedEx office locations for pickup. Here is their link: http://www.midwestgrowkits.com/
You can not get the spores and all the growing supplies and instructions all in one place, sorry.
Instructions: This is part 1 of a 5 part series and is the best online for growing your own mushrooms.
Once you get to this video just click on each follow up video by the same person.
Part one ; http://www.youtube.com/watch?v=ZHJQrsZFQdE
Additional Growing magic mushrooms video
2. LSD (lysergic acid diethylamide) There is no way of procuring this other than through illegal means. Information on the treatment is on the Clusterbusters pages and instructions are very similar to those of the psilocybin treatments. You just can’t grow your own.
It has been shown to have slightly better results than psilocybin and LSA. This may be due to the fact that it is a more pure chemical than using mushrooms or seeds, and that the effects can be felt for about twice as long so it is treating the cluster mechanism for twice as long as the other psychedelic treatments.
3. LSA (Seeds) (d-lysergic acid amide )
Ordering LSA seeds is easy online. There are several sites that can be trusted and have been helping people with clusters get good product. You don’t need to mention the seeds will be used to treat clusters and if you say you will be using them for that purpose, they can’t send them to you and will cancel the order. They are, for legal purposes, “not for human consumption”. They know what they will be used for. Ordering them is perfectly legal. If you’ve ever purchased Morning Glory seeds at a flower shop or from Amazon, you’ve had these seeds. You may have them growing in your garden.
One of the biggest warnings with the seeds that everyone needs to be aware of in the vascular constriction that comes along with these. Just like the warnings that come with prescription ergots, there are things everyone needs to be made aware and handle with care. Example: If you suffer from Reynaud’s syndrome, you should either stay away completely or be very careful with low doses. You should always consult with your doctor on adding any chemicals to your routine. They are the ones that will know your medical history and other issues you may have.
One place that has been around a long time is:
I Am Shamin : http://www.iamshaman.com/
You want to order Rivea Corymbosa seeds. http://www.iamshaman.com/eshop/10Expand.asp?ProductUID=1853&ProductCode=RVC-50
You can also use Hawaiian Baby Woodrose seeds but they are a little more difficult to process and also harder to adjust doses. I would suggest the Rivea Corymbosa seeds to start.
The fewer the seeds the better in that you will then consume fewer of the ergots that are in the husks. This is why Morning Glories are the least desired method as it would take hundreds of seeds for a dose. The HBWR though are so potent that the difference in one or two seeds can make a big difference in the hallucinogenic effects. That makes it much more difficult to adjust to the lowest effective dose.
This is a link on our website for more info on the use of these seeds:
People are using up to about 100 of the RC seeds for a dose for clusters. Its good to start with a small amount (10-20) just to make sure you don’t have any issues with being allergic to any of the additional chemicals found in the seeds. There are some other ergots in the seeds as noted above.
Instructions for dosing with seeds:
An effective dose is most usually 60-100 RC seeds.
Crush them the best you can and soak in water for 1-2 hours. Any longer does not help and at some point will start to degrade the LSA. After about 6 hours it will actually break down the LSA content.
You can also soak them in clear alcohol if you like. Vodka works and will extract the LSA slightly better than H2o. But water works fine.
You should add a dash of lemon juice to aid in the extraction. You can also dissolve a vitamin C tablet in the mix. You should strain the solution. You don’t need to ingest the husks.
You can mix the solution with something like cranberry juice or anything that has a strong taste because on its own, the solution does not taste very good.
All the same rules about dosing with mushrooms or LSD apply to using the seeds. This includes avoiding all the usual cluster meds. See the link about warnings and use of mushrooms.
This dosing works best if used once every 5 days until the cycle is broken. After a couple of doses you should try to expand the time between doses a few days each time. But don’t push this if you seem to be losing ground while waiting.
This is a fairly new treatment and many people have reported good results. It can be ordered online at the moment. There are different and changing laws regarding this chemical.
It does have hallucinogenic properties but just like the other psychedelic treatments, the dose is small enough that those effects are minimal for most people. Some can just take it and go to sleep avoiding all noticeable side effects. Unlike most of the other psychedelic treatments, 5-Meo-Dalt seems to be needed on a more regular basis and may not “break” your cycle in the usual sense. It is taken on an every 5 day treatment course but just like others in this class, this time period can often be expanded between doses. There is plenty of information online regarding how to obtain this chemical as well as the treatment procedure. The best and most complete paper on this subject can be found in the “files” section of the Cluster headaches facebook group. It’s also the best place to ask questions on this treatment. https://www.facebook.com/groups/17789934480/
The general treatment plan and the process involved is also based upon all the same information that is found in the Clusterbusters psychedelic treatment documents. The scientific paper on 5-meo-dalt can also be found on the CB website, here:
This is a vitamin and supplement regimen that has shown very good results for many people. All of the information can be found here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
There is quite a bit to learn and understand on this treatment and you should read all the information, not just a “Cliffs Notes” version. It’s not a difficult program to put together and will require some lab testing along the way but it can be very worth the time spent.
Most of the items on the list have been shown to be effective in treating clusters and other headache disorders on their own. Fish oil, magnesium, B vitamins etc, all have scientific data showing efficacy to some extent. Putting them all together and adding vitamin D has been more effective than any one alone. B. Kudzu Root This crazy plant that will grow across a roadway overnight has been used to treat headaches for centuries. Details can be found on our website. It’s a supplement that can be purchased online or at your local health food shop. The scientific research which was carried out by Clusterbusters and Dr. Andrew Sewell can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2008.01268.x/full
Information can be found on clusterbusters.org
1. Energy Drinks
These can be used to abort an attack if used quick enough and work pretty well with “shadows” The combination of caffeine and taurine seem to be the active ingredients that help. There are many options out there and all have varying amounts of these chemicals. Find one that works best for you with the least amount of side effects. Don’t over use them, but carrying one around with you can be helpful in getting through the day.
2. Ginger Tea
Again another natural herb that has long been used to treat many things over the years but has been replaced by prescription medications that oftentimes are less effective than what nature has provided. Ginger tea can be very relaxing and not just psychologically.
You also need to remember, that just because it is natural, (as with all the same suggestions here) that does not mean there can be issues and side effects and contraindications. Be sure to read the warnings found on the CB pages.3.
3. Skullcap Tea
This one is about the best one you can use if you are looking to remove some of the anxiety that you may have while taking other psychedelic treatments. It can be ordered online. If you want to try getting off of, or before getting onto, Xanax or Valium or something similarly strong and addictive, you may want to give this a try before going down that road.
Melatonin is a natural hormone that your body produces. Its levels seem to drop off in cluster patients and it helps regulate sleep among other things. There have been
some studies of its efficacy for clusters and it does help a lot of people get some sleep and eliminate some of the nocturnal attacks. Its only available with a prescription in the UK but is over the counter in the US. It can leave a person a big groggy if you wake up in the middle of the night and have to head for your 02 tank so be careful. The same can happen with some waking up in the morning. It can give similar effects as other sleeping pills. Some people have good results with as little as 3-5 mg at bedtime but others go all the way up to 20mg. Take it an hour before bedtime so that its in your system when you hit that first REM sleep.
Magnesium has also gone though a few cluster headache studies and has shown some good results. Its often used in an IV cocktail to treat both clusters and migraines in ER’s. It is taken at a dose of 400mg daily and I would suggest starting it a month or so before your regularly scheduled cluster cycle is due to start for you episodics. If you are going to stay on it for an extended period of time (if its helping) then you should also add an equal amount of calcium to your diet. Magnesium will deplete your calcium stores. This is also something you may want to consider adding to your diet if you are using verapamil as it can help with the constipation that verapamil provides.
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.
1. Imitrex and the other triptans
Personally I am not a fan of Imitrex. 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.
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.
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.
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.
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.
Verapamil. 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 tresting 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
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 to 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. If you’ve been on it a long time and at high doses, you need to speak with your doctor to see if you should get an ACTH injection to get your body producing cortisol, its natural version of prednisone, again. Your body will shut down producing natural chemicals when you introduce the synthetic versions, in it’s own attempt to keep levels safe and stable.
Links to additional information on the above topics as well as additional research and information can be found here on the Clusterbusters website. https://clusterbusters.org/links-tools/
Tidbits & Big bits
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 how they are diagnosed. 40% of you had dental procedures done hoping it would help your headaches/toothaches before you found out they were clusters. Teach your dentist for the next person. Toothaches do not happen every night at 3am and last just 45 minutes, EVERY NIGHT.
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. It’s true that air travel can trigger an attack. I’ve heard it said that if you take a capsule of mushrooms prior to leaving for the airport, it can help you avoid that problem.
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.
A. Marriage & Relationships
50% or marriages end in divorce. 99.9% of those do not have clusters in their lives. When we 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 stay regardless. Leaving is the normal response. Staying and supporting is the exceptional response.
B. Jobs & Workplace
Everyone loses jobs. No one stays anywhere for 35 years anymore. It’s 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.
C. Vacations & Events
Please do not be afraid to make plans in fear of a possible attack. There are some things that you can do to alleviate some of that fear and be able to treat an attack IF it happens. More importantly what I have found and have heard over and over is that actually going to the event will prevent an attack that may have usually come at the scheduled time. Don’t let the “possibility” of an attack stop you from doing anything. If you stay at home, it was your fear that took away the event, not the clusters. Here is something to consider. Cluster used to be called “executive headaches” because people in high stress jobs (as if only executives have high stress jobs) would be fine during the week while at work and then when they headed home for the weekend and began to relax, the clusters would strike. This is caused by chemical changes in the body that are caused by stress and the release of that stress. You may sometimes cause a self inflicted wound that leaves you thinking that you did the right thing by not attending an event and then after not going, you get an attack, making you think you did the right thing by staying away. You have put yourself thru this stress/release cycle. Don’t stress about it in the first place and you won’t be building up all those stressor chemicals that will eventually release and cause an attack. You’re even better off stressing about it and still going and being a bit stressed while there. it’s when you stay home and relax and release that stress, your couch time will not be pleasant.
D. 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.
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 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.
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.
Don’t, just don’t bother.
Addendum 1 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.
This one is in the early stages of testing. 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.
Ketamine topical cream
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.
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.
General notes on psychedelic treatments.
Copyright © Clusterbusters, Inc, 2016
All rights reserved. Not to be republished or distributed without prior written approval from Clusterbusters, Inc.
Have you registered on the Clusterbusters “Patient Registry” yet?
Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure.
By completing this simple form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. By joining our list you will be kept up to date on all the newest studies and research.
Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process.
This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits.
People from all walks of life, all ages and every description, suffer from cluster headaches.
We are presently involved in several ongoing research projects as well as several others that are in the long process of approval.
As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway.
Be a part of a better future for cluster headache patients and participate in our registry.
As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board.
Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information.
Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at email@example.com and we will mail a written copy for completion and inclusion.
To participate, please go to this link:
Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this year’s conference.
Even if you can’t make the conference, we’d love to have everyone appear on the registry.
I’m happy to present the following guest blog contribution. It’s on a very important topic to many people suffering from cluster headaches. Any time we have the opportunity to present expert opinions on important topics, we strive to bring it to our members and the general public.
Deanna Power is the Director of Community Outreach at Social Security Disability Help, an independent organization dedicated to helping people of all ages receive Social Security benefits. She specializes in helping families determine whether or not they medically qualify for benefits. If you have any questions on how cluster headaches may qualify, or need any additional help, she can be reached at firstname.lastname@example.org.
Deanna’s experience with SSD and also being the supporter of a cluster sufferer makes her uniquely qualified to speak out on the subject. Thank you Deanna for helping us educate and advocate for the cluster headache community.
Cluster Headaches and Social Security Disability Benefits
If you experience cluster headaches, you know how completely debilitating they are. Research is completely underfunded, treatment success completely varies by patient, and the cluster community is wildly underrepresented. I only first heard of cluster headaches once my partner started getting them. Because of the lack of awareness of the severity of the illness, it’s very challenging for people diagnosed with cluster headaches to be approved for Social Security disability benefits. Although challenging, (and frustrating), it is possible.
The First Hurdle to Overcome: 12 Months Disabled
Every disability approved by the Social Security Administration (SSA) needs to last for at least 12 months, or be terminal. The majority (around 90%) of cluster headaches come in “cycles” for sufferers, meaning you can go months or even years without an attack. This limitation is yet another hurdle people with cluster headaches to overcome. If your cluster headaches are not chronic, you will almost certainly not qualify for Social Security disability benefits.
If, your cluster headaches are chronic and you’re constantly plagued by the pain, you have a chance of qualifying for disability benefits.
Medically Qualifying with Cluster Headaches
Every time the SSA receives an application for disability benefits, it will compare your medical records to its own medical guide known as the Blue Book. The Blue Book lists hundreds of disabilities that can potentially medically qualify for benefits, and the exact test results or symptoms you’ll need to be approved.
Cluster headaches are not listed in the Blue Book, which is why it’s so hard for you to be approved. There are two ways you could be approved for disability benefits if your disability is not listed: Meeting another listing, or qualifying through a Medical Vocational Allowance.
Medically Qualifying: Meeting Another Listing
The Blue-Book listed disability that you closest meet with Cluster Headaches is found under Section 11.00, Nonconvulsive Epilepsy.
Before you think “epilepsy, no way,” consider the symptoms required to qualify. This Blue Book listing states that you must experience alteration of awareness or loss of consciousness and “manifestations of unconventional behavior,” or significant interference with activity during the day.
Anyone who’s had a cluster headache or has seen someone have one knows that it’s impossible to do any normal activity until the headache subsides. In addition to the “alteration of awareness,” your headaches must occur more than once weekly, and they must occur despite at least 3 months of prescribed treatment.
This means that if you are not receiving treatment from a doctor, you will not qualify under this listing, regardless of the severity of your headache. If you are receiving treatment, like using oxygen and taking various forms of medications (such as sumatriptan), but you still suffer from at least one cluster headache a week, you could medically qualify under the epilepsy listing.
Medically Qualifying: Medical Vocational Allowance
The second way to qualify for Social Security benefits is by qualifying for what’s called a Medical Vocational Allowance. This allowance is for claimants that do not qualify for disability benefits through the Blue Book, but clearly cannot work anyway. Your best bet of qualifying for a Medical Vocational Allowance is by having a doctor fill out a Residual Functional Capacity (RFC) evaluation on your behalf. An RFC is a questionnaire that helps the SSA see exactly how your cluster headaches affect your ability to work, from your ability to stand, walk, lift weight, and more. You can download an RFC for your doctor to fill out on your behalf online.
Qualifying for a Medical Vocational Allowance will be much easier for people who have dangerous and physical jobs that jeopardize themselves and others if a cluster headache strikes. For example, if an airplane pilot would more likely be approved than a software engineer who works at a flexible company, allowing him to stop working until the headache passes.
Applying for Social Security Benefits
There are a few options available for you when you decide to apply for Social Security. If you’ve worked throughout your life you can most likely apply entirely online. If you’ve never worked or if you haven’t worked recently–such as a young applicant or a parent who took time off to raise a child,–you will need to stop by your nearest SSA field office.
The most important component will be to submit every piece of medical evidence you’ve had. This includes statements from every doctor you’ve seen, all the medications or treatments you’ve tried, and exactly what types of activity you’re limited to. There’s no such thing as adding “too much” information onto your application.
The more you show SSA’s disability examiners how much your cluster headaches affect your life, the better your odds of approval. Some documents and information you should prepare for your application include:
A complete list of what you’ll need to apply can be found on the SSA’s website, within its Adult Disability Starter Kit.
What to do if Your Claim is Denied
Unfortunately, the fact of the matter is that most people are denied benefits the first time around. In fact, only about 30% of applicants are approved initially. If your claim is denied, do not give up on applying for disability benefits. There is a lengthy appeals process available for you, and the majority of applicants are eventually approved after appealing their claims.
The first step of the appeals process is filing for reconsideration. This online form asks the SSA to look at your medical evidence again and revaluate your claim. The majority of reconsideration requests are still denied.
The second step of the appeals process is appealing in court and having an Administrative Law Judge (ALJ) review your claim. This is where most applicants are approved for benefits. In fact, nearly 50% of claimants are awarded benefits at their hearing. The reason for the higher approval rates is because you will be given the opportunity to plea your case in person. Many people have witnesses speak on their behalf during ALJ hearings.
If your disability hearing is denied, it is advisable to restart your application instead of continuing the appeals process. You cannot supplement your appeal with any additional medical information after an ALJ hearing, which makes later appeals nearly impossible to win.
The application process may feel overwhelming at times, but do not give up! If you are able to submit the medical records proving how severely your cluster headaches affect your life, and you know you will not see relief for at least 12 months, you may be financial assistance your family needs.
Another important step in our work has been taken and we’ve been published by a very well respected medical Journal and now available online at one of the most widely referenced medical publishing sites.
Getting this information not only published but made available through this outlet is a testament to the fine work completed by our team of researchers at Yale University, Dr.’s Schindler and Gottschalk and the late Dr. Sewell, the Clusterbusters Medical Advisory Board and specifically Dr. Robert Shapiro, and the hard and determined work of both Dr. Douglas Wright and Ms. Marsha Weil.
I am posting the abstract but the rest of the 11 page document is covered under copyright regulations. Feel free to copy the following ISSN and online info and pass along to your physicians for discussions on the topic. 😉
This study, it’s followed guidelines, results and subsequent publication moves our work a step past anecdotal reports and will be the basis for continued research studies
Thank you to everyone that took part in this study, all those that worked tirelessly for the last couple of years, and to all those that have supported our work.
Thank you for the work, the support, and the inspiration to keep moving forward.
Journal of Psychoactive Drugs, 47 (5), 372–381, 2015
Copyright © Taylor & Francis Group, LLC
ISSN: 0279-1072 print / 2159-9777 online
Indoleamine Hallucinogens in Cluster
Headache: Results of the Clusterbusters Medication Use Survey
Emmanuelle A. D. Schindler, M.D., Ph.D.a; Christopher H. Gottschalk, M.D.a; Marsha J. Weilb; Robert E. Shapiro, M.D.c; Douglas A. Wright, D.C.b & Richard Andrew Sewell, M.D.d
Abstract—Cluster headache is one of the most debilitating pain syndromes. A significant number of patients are refractory to conventional therapies. The Clusterbusters.org medication use survey sought to characterize the effects of both conventional and alternative medications used in cluster headache.
Participants were recruited from cluster headache websites and headache clinics. The final analysis included responses from 496 participants. The survey was modeled after previously published surveys and was available online. Most responses were chosen from a list, though others were free-texted.
Conventional abortive and preventative medications were identified and their efficacies agreed with those previously published. The indoleamine hallucinogens, psilocybin, lysergic acid diethylamide,
and lysergic acid amide, were comparable to or more efficacious than most conventional medications.
These agents were also perceived to shorten/abort a cluster period and bring chronic cluster headache into remission more so than conventional medications. Furthermore, infrequent and non-hallucinogenic doses were reported to be efficacious. Findings provide additional evidence that several indoleamine hallucinogens are rated as effective in treating cluster headache. These data reinforce the need for further investigation of the effects of these and related compounds in cluster headache under experimentally controlled settings.
The full article can be accessed here: http://www.tandfonline.com/…/…/10.1080/02791072.2015.1107664
When I started Clusterbusters, I knew I had chosen a difficult route and uphill battle in getting the things accomplished that so many of us knew needed to get done. If we were going to bring cluster headache treatment out of the 18th century and into the present this was not the easiest path. Making positive changes on a global scale are never easy.
One of the biggest obstacles we had to overcome turned out in the end, to also be one of our biggest helps in bringing about awareness. Psychedelics.
When people questioned their effectiveness or safety, we took the approach of doing more research, providing more evidence & explaining the facts. If people didn’t understand, our job was to educate. If people understood but were afraid, we provided information to help ease the fears. The only way to do this was provide the truth and the facts.
When we put ourselves “out there” and expanded the scope of the conversations, and proved that reasonable people can discuss these options without ending up in jail, our reach grew and we refused to hide facts that could help people in need.
Over the years we have been able to get more press and exposure for cluster headaches and those that suffer, than had ever happened leading up to that point. Although many people tried for years to get exposure in the media, it was never easy to get anyone to listen. We didn’t have Jerry Lewis. We didn’t have what was thought to be “newsworthy” and part of this was also made more difficult because we had all spent years hiding our condition rather than trying to show what was happening or try to explain it to people.
What we did have were psychedelics. What we did have were people that were willing to show themselves in life changing chronic pain and what we had found that could help people.
Whether people like it or not, and some did not like our story, we finally got the attention of the media as well as politicians and the medical community because we were using psychedelics. Now there was a story that news outlets wanted to run. Who are these people that are suffering so much that they would be turning to street drugs to treat their pain. The fact that we were suffering from something nicknamed “suicide headaches” and all the lives that had been destroyed over the years was never enough on their own.
The first front page story in any major newspaper regarding cluster headaches was a story of someone treating their clusters with mushrooms and growing his own medicine.
Almost every headline or TV trailer included the word psychedelics and there have been thousands of them now. The hook was psychedelics but the story was in the people. The story was what we were all living with and what we were trying to do on our own because the system wasn’t being of much help.
The first “doctor” to prescribe psychedelics for cluster headaches was done on national TV for all the world to witness. Magic Mushrooms (psilocybin) were used to treat cluster headaches on an episode of House. This was the first time clusters ever made their appearance on television and described as a serious condition.
When the producers of the show were contacted, they informed us that they had taken their information and developed their storyline based upon the information on our website. They then followed up this original story with another along the same lines when they had Dr. House treat his migraine headaches with LSD.
When the facts were put out there, the medical community could not run from the facts. As more and more stories went out and people went public, they could not ignore the facts of the molecular similarities between what we were using and having success with, and the chemical activities in our brains. As more and more discussion occurred, more and more doctors and researchers agreed that it was understandable that these substances would work.
In many cases, our hook was the psychedelics but in the end, the stories most often centered upon the people and the condition and either didn’t focus on the psychedelics or completely ignored the psychedelic angle and the facts about the people and what clusters do to people, was all they needed for their story. Psychedelics may have opened the email or enticed someone to answer the phone, but it was the stories of strength and survival that would become the news.