Cluster Headaches
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Cluster headache is the most dramatically painful of all known headache types. They are also known as suicide headaches due to the high rate of suicide among sufferers. If you, or some one you love is affected by clusters, your know first hand how this painful affliction is debilitating and life altering.
What is a Cluster Headache?
A cluster headache is characterised by pain exclusively on one side of the head, behind and around the eye socket and at the temple. It is described by sufferers as feeling like a red hot poker jabbing through the eye with immense force.
It lasts an average of 45 to 90 minutes, but can be as short as 20 minutes or as long as 3 hours. Patients will often be sleeping and awakened 90 minutes or so into their sleep cycle by the pain. It occurs in clusters, 1 to 3 times a day on average, but can be as many as 10 separate headaches in a 24 hour period.
In 90% of patients, episodic cluster headaches will occur for around 6 weeks with a daily cycle of headaches and can then disappear completely for a year, two years or more.
For the remaining 10%, chronic cluster headaches can continue for years, several times per week.
Who Suffers From Cluster Headache?
The typical sufferers are men in their 30's. It affects only .1% of the population. A family history of clusters is uncommon, but a history of other less severe headache will likely may be present.
Migraine headache, by contrast, affects 1 in 5 women and affects women 3 times more often than men.
Cluster headache is far more severe than migraine. A migraine sufferer will typically seek out a dark room to lay down and rest. A cluster sufferer cannot sit still, may pace, and rock and drive their fist into their the painful eye. Some patients will bang their head into a wall.
Is There a Cure?
There is no real cure for cluster headache. There are many treatments, both for preventative measures and pain management. Treatment may work well for some patients for years and then become ineffective. Some patients have difficulty finding a treatment plan that manages their pain enough for them to continue working and living in a relatively normal manner.
Treatment Options: (This is a partial list)
Oxygen: Many doctors use this as the first defense against cluster headaches. The patient will keep an oxygen tankin their home and will breathe pure oxygen for 20 minutes. For some patients this will bring immediate relief.
Triptans: The patient injects themselves with with sumatriptan. This generally stops the pain within 10 minutes. A nasal spray can also be used but the pain relief is slightly slower. The safe dose for either the spray or shot is 2 per day.
This treatment leaves a patient who typically suffers with more than two headaches per day with a problem. Feel the pain? Or take the risk of doing additional harm by taking more than recommended? Taking too much sumatriptan can cause serious heart problems.
Surgical Treatmentt: Surgical treatments are considered a last resort when a patient does not respond to any other treatment because of the high risks involved. Surgery for cluster headache is highly invasive and risky and the results are not yet proven more than 50% positive.
Possible Alternative Treatments:
Some cluster headache patients have found alternative therapies to help with pain management, and reduce the duration of a cycle of cluster headaches. The results will vary. Be certain to find a liscensed practitioner, preferably with some knowledge of cluster headache.
- Biofeedback
- Chiropractic
- Relaxation Techniques
- Acupuncture
- Massage Therapy / Trigger Point Massage
- Cranial Sacral Therapy
Knowing the Pain is Coming
Support for Cluster Headache Patients and Families
Support is essential for anyone suffering from cluster headaches. Their lives are affected profoundly and daily by unbearable pain. To understand, watch the video on the right. If someone you love has clusters, understand their struggle. Do what you can to help them get through each cycle. Help them to manage the details of the rest of their life during a headache cycle. Be familiar with the danger signs of depression, because it often accompanies chronic pain. Know when to seek professional help. Find a support group for patients and / or for families dealing with this incredibly unique and painful situation.
It is important for family and friends to understand that cluster headaches are not migraines. Cluster headaches are unlike even the worst migraine or the constant pain of New Daily Persistent Headache. If someone you know is suffering, please try to be patient and supportive of them.
More Information on Cluster Headaches
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Hi MSMS, thanks for reading and commenting.
Unfortunately, there is no permanent cure. Even the extremely risky surgeries are not successful all the time. This is a personal story for me, because my brother has suffered from clusters for 20 years. He has tried every possible drug and treatment, but nothing seems to work long term. All of the medications used can cause other serious health problems as well. It is hard to comprehend the kind of pain they suffer. I have witnessed it first hand, and it is heartbreaking to see someone you love suffer like this, several times a day, for years.
There is also very little information as to what causes clusters. There are only statistics as to what type of person gets them. It may or may not be genetic. There is conflicting information on that.
A strong headache makes me really useless. Luckily, I managed to get rid of constant headaches by some very useful and working tips and tricks of Dr.Richard Bandler and Dr.John Grinder, who are fathers of NLP and NLPII.
Thank you for commenting, Ervin. That is definately a headache solution worth looking into. :)
I started having cluster headackes about a year ago and they lasted 6 months and just suddenly stopped. About a week ago they began again and I was wondering what kind of medications worked for everyone and how long they helpped before not working all together. I was on Fioricet and percocet when I first started getting them and requested that medication again but it doesn't seem to help at all anymore but my new doctor refused to take me seriously and wont give me the percocet. Does this mean that the only thing that will help is narcodics? If anyone can help PLEASE respond. I can't take this pain for much longer
Hi Mandy - I am just seeing this now and I apoplgize for not getting back to you sooner. Do you see a doctoor who specializes in treating clusters? If not, I would encourage you to seek out a neurologist who takes them seriously and understands the pain better.
My brother has suffered from clusters for 20 years, and has tried everything - there are definitely options other than narcotics. Usually, the pattern that he has experienced again and again is that a medication will work, he will be pain free for months and months and then the medication stops working and he has to try something new.
I know that he has tried verapimil (works well) (spelling is probably wrong on these) topomax (didn't help), lithium (worked for close to a year). Those were used a preventatives. He had an oxygen tank for awhile until that stopped working. Usually, he can stop the pain with an injection of Imitrex or the nasal spray works as well for some people.
Please email me directly (click on contact amy jane up under my picture) if you want some more suggestions /recommendations - I would be happy to help in any way I can.
The real cause of Cluster & Migraine Headaches have been discovered, by a man and a formal Migraine & Cluster Headaches patient.
Should not you step back and reconsider ? Should not you investgate his claim?
Insted of waitting for another 250 years,Then issue a warning about the use of Pure Oxygen.
Kind Regards,
A Cluster Hedaches Free
Without Oxygen,Drugs,Herbs, and most important without headaches or pain at all.
Unfortunately, the reality is that oxygen does not work for everyone, but it is worth a try if you haven't used it before to treat clusters.
just want to comment that any sufferers of CH should look into every type of non-narcotic treatment before they fill a script for narcotic pain meds and take the easy way out, its going to make things harder in the long run. i suffer from CH and am currently addicted to methadone, i basically take it to keep from being sick, but the pain, its still there, when i wake up, and go to bed.it may be tempting to get that relief, but when u have to put somthing into your body before you can function (headache or not) its not worth it, take it from someone whos already screwed themself up, thats exactly what ive done...
Hi Jake, thank you for sharing your story. I agree, staying away from narcotic meds is essential to your long term health. I know from my own headache issues (new daily persistent headache) that narcotics don't really take the pain away - but they do help me get through the day now and then when the pain is too much for me. I am very careful with it, because I can completely understand how a person could get addicted.
I hope that you are doing better and have been able to cut back or find some relief for your pain.
Also, I don't think it is your fault. the pain of clusters drives everyone to drastic measures for relief.
been looking for my post for a long time, and happy that you answered it. since that post its been a rollercoaster ride, 4 months ago i decided against my doc's orders that it was time for me to ween off methadone even though i knew the pain would get worse, i just wanted my mind back, my life, i wanted to be excited about living. i was taking 60 mgs of methadone 13 months ago during that post, as of right now i am only taking 15mgs and ive done this in 5mg increments with the help of my mother,father, and brother who have all wanted me back for a while. it seems selfish to give in to narcotics when it hurts your family, so this was just as much for them as it was for me. without them i probably wouldnt be here at all bc this disease will beat you senseless as it has me and many others.just 6 days ago i had to go to the ER, they had come back after an absence of a month or two. my blood pressure was 175/126 and it took 4mgs dilaudid to stop the attack along with oxygen. its times like this that make it hard to get off of these drugs especially when they can at times provide instant relief, but when u leave the hospital there is only one thing to be sure of, the fact that youll live with this forever. if you are a family member of a sufferer the best thing you can do is talk to them, allow them to vent. its miserable for both sides, i hope someone is helped by this. i know there are alot of people like me who have no insurance and feel helpless, dont give up, dont give in to the voice inside telling u to take the easy way out bc trust me it will lead u down a much worse path, im 6 foot 4 and all of 155 pounds right now bc of this long methadone detox, hoping to get sober and gain some weight while praying i can hold a job soon. sorry for long post, just hope this helps someone
I pray for all that suffer from these debilitating attacks. I never liked the term headache , If you never experienced someone having an attack imagine someone pushing a hot icepick into Their orbital socket. The worst part is many people go many years misdiagnosed . My wife of 28 years is a sufferer and goes a full 13 weeks every day for 13 weeks. she will have a cycle usually every two years. She went 15 years misdiagnosed until we seen the right neurologist and she had an attack right in his office. He took one look at her and said sorry to tell you but you have cluster headaches.
Now every year I spend many yours searching and researching possible treatments. I will give you the treatments that worked for us and how relieved we were. Imatrex which is a triptan in injections , pills, and nasal spray was god sent. But because she can have 6 attacks a day it became dangerous. One trick we used was to take the vial out of the injector and mark it off in thirds and use a q tip to push just one third per attack. It was very useful and helped with cost. Many insurance companies will only allow the amount needed for a migrain. Many times we would run out and the ER was our only hope.
Before I lose many readers this site helped us more than any doctor and i owe them so much. www.clusterheadaches.com The second really useful trick was believe it or not was to chugg a redbull as soon as she felt any indication of an attack. I read it on the forum board and figured we had nothing to lose. And it would back it off mant times .
The third real useful treatment was oxygen therapy . This last cycle we finally convinced the doctor to try it and couldnt believe how great it worked. And for those that the oxygen has stopped working dont give up , many sufferers have had success after it stopped working .
Also one of those plastic hoses that go in your nose is a waste of time. You need a rebreather mask for it to help. You can use the nose hose but you must put it in your mouth and pinch your lips around during inhale and exhale through your mouth . Do not breath through your nose . A rebreather mask is the better choice. Also never use a strap for a mask . If you oxygen went empty you could suffocate. I have so much to add I need to write a hub. To all you sufferers hang in there your not alone. Love you all !!!!!!!!!!!!!
I've been having cluster headaches sinces I was 28 now I'm 40. I had no idea what I was facing until I got to deep looking for some kind of relief. I first started taking vicodin then I jumped up to oxycontin. I became addicted to these drugs for obvious reasons and this ruined my life in many ways. Family and friends didn't understand why I was doing this to myself I lost everything and everone and eventually became homeless living in my truck. My headaches increased in length and became chronic so I seeked heroin which was cheaper and more effective. My life had reached the point of no return so suicide was sounding like the best answer in my head. I got into trouble to support my habit and found myself in jail detoxing and going through the most extreme clusters ever. While sitting in jail I got bells palsy and half of my face lost all nerve control it looked like my skin was falling off of my skull. I was in bad shape so they let me see the nurse. I told her about my headaches that was more important to me than talking about bells palsy she understood so she researched some medication for me and put me on topamax and eventually I began to get some relief. I've made it my number one priority since to get the medical attention I need from imitrex, oxygen machine and tank at home, topamax, divalproex, verapamil, frova. This is a full time thing for me to manage it never stays away for long and once I think I found a good drug it stops working and then off to the next. The sad truth is the only drug that worked for the long pull was heroin but I lost everything inside and out friends family dignanty my desire to live in trade.
Great artical! For years I thought I had migraines recently I went to a nerougalosit who said I had cluster headaches I suffer alot and feel blessed to have come across this artical great info I learned alot about my condition just from reading your work voted up usefull!
msms 4 years ago
What could be the causes of Cluster Pain?
Your writing is helpful to know about the condition and fate of pain-sufferer but it seems there is permanent cure. Is it?