Hello All my name is Johnny. I am a 37 year chronic Cluster Headache sufferer. I am also very involved in bringing awareness to Cluster Headaches and am starting a information campaign to gather stories from all sufferers to have everyone tell there story about CH and how it has affected your life and just tell your story of how it is for you to live with Cluster Headaches and your knowledge of it and description of your pain and suffering.

I am working to bring this information to agencies such as A.C.H.E The American Committee for Headache Education and to Bob Wold to take to the annual "Headache on The Hill" in Washington D.C also to gather this information to take to our congressman and to have for meetings with government agencies to achieve awareness on how very serious our disorder is.

If You don't feel comfortable posting it here please email your story to clusterheadaches59@yahoo.com  Their is no need for names so we can keep your privacy however if you wish to give your name feel free. Anyone from all countries can tell there story and those letters will be sorted and sent to you chosen government agency to best serve your interests. Please tell what country you are from and whether you are chronic or episodic in the beginning of your letter.... This is a world wide effort!.......Johnny :) :)

For 10 years the medical profession treated me like a guinea pig because they had no idea what was going on. Finally diagnosed as a classic ClusterHead and for the next ten years they treated me as a guinea pig because they had no idea what was going on.

Ten years ago I walked away from the medical profession because I know what's going on, and it's the best move I made.

Thirty years and nothing has changed.

Hey Brian aint that the truth!
It is not surprising to me that that's the choice you made cause they are still grasping at straws and working the old school meds but with people like Pete Batch we have something new to help folks become pain free with no side affects too!!The medical and research community needs to get there head out of the sand and start thinking in this day and age!!....Johnny ;)

This is my Cluster history and Meds... Right now my doctor has been treating me for about 8 years for 17 operations I had, all major and has been treating me for my Clusters for 8 years as well. I am now using vitamin D3 daily with great success and oxygen for several years now with fair success. I am CH free at the moment for 28 days, the first time in 37 years.

In the past I have used verapamil, topamax, depakote, relpax, gabapentin, cymbalta,  prednisone,  ergomar, as the ones i remember for preventatives and my Dads a dentist and gave me novocaine blocks all with no success and imitrex with good success but was only offered tablets and with 10 to 20 clusters daily they thought it was to dangerous to take so much of it . I was never offered injections....This was about 7 years ago and I don't know if they were available.

I suffered because in the beginning when i was 14 till i was 30 i was never diagnosed properly and was told I had some kind of "Super Migraine" that's exactly what the neurologist said and prescribed codine??? That did nothing but give me horrendous rebound headaches so what i ended up with was going to a hypnotist who taught me self hypnoses and and taking 200 excedrin weekly and getting ulcers i had 3 by the time i was 30. I have since been diagnosed 3 times by different doctors with chronic cluster headaches I then went into a 3 year remission and when they came back with a vengeance and have been chronic ever since.

I have been scared out of my mind! The clusters I was getting were so much worse! Over the last year they have gradually have gotten worse and worse and especially over the last three months and a few weeks ago at night was the kicker!! I thought my eye was bleeding and nose and was partially blind even in my other eye??

That is a new symptom and has happened twice now were I can't see 6" in front of my face and I was on the ground screaming which I used to do all the time when i was a kid but learned to hold in the screams, but not this cluster just way to powerful! and i actually passed out twice and lasted about 3 1/2 hours. Normally they last about 15 to 30 minutes with using oxygen and the last 10 except that super cluster have lasted about 45 minutes to an hour. I don't know what was happening to me? From what I have read I thought Clusters were supposed to get better with age not worse?

Cluster headaches have been a part of my life for almost 37 years, they started for me when i was 14 in 1973 and i have always been a chronic sufferer. When they first started I was so scared that i had a brain tumor cause that's what the doctors thought until they did all the tests and came back negative and was given my first diagnosis as having "Some kind of super migraine" As the neurologist called them.
When I had my attacks i would roll around on the floor screaming with the sensation of having an ice pick driven into my right eye and incredible pain on the right side of my head. 37 years later and thousands of cluster headaches behind me I still find myself rolling around on the floor screaming into my pillow or into the oxygen mask.

All my 30 year career as a captain, commercial fisherman, commercial diver, engineer, explorer and mariner i dealt with these CH's with no preventive medication or abortive's as I rarely new what port i would be in next and never had the proper care to help me. I actually diagnosed myself first in 1989 after reading about CH and i knew thats what i had and told the next doctor about it and he agreed with me so it took about 16 or 17 years to be diagnosed and all the doctors before and after this for another 14 years just wanted to give me codine or other narcotic which just gave me rebound headaches. So I just suffered all those years but was still able to have a career and hide most of my CH's by going into the bathroom or hiding somewhere on the boats but on many occasions i would have to explain why my eye was watering and why i was holding my head in agony.

I would just explain that i had cluster headaches and that was that. I never gave enough detail to anyone so they wouldn't worry about me. I coped with my CH because i had no choice and i was so busy all the time that i worked through them but i suffered greatly. Ch Over the years has brought me to the brink of suicide on many occasions and has made me wonder so many times of WHY am i suffering so much!!! What did i do to ever deserve to this horrific agony!!
Then I move on and just except it.......Johnny  :-[

We have supplied our stories for both sufferer and supporter to Bob.  If he doesn't have them, let me know and I will see if I can locate them.

Thanks,

Louise and Adam Barham

Just go to the gues book and get all the stories

We still need stories from new members and for those that have not told there stories for the cause.....Johnny :)

I dont understand what approach you will be taking that hasn't been taken previously.

I am working with Bob Wold and these letters are going to the "Headache on The Hill" when he goes . I realize this is just a drop in the bucket but every bit helps. I know i don't stand a chance on my own thats why i'm working with folks like Bob Wold and Cindy Reynolds and plan to work with A.C.H.E The American Committee for Headache Education. Bob has asked me to give the letters that I collect to him so this is just my start in helping with the awareness issue and I plan to get more involved in other areas as well so please please help us with your story....Johnny :)