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Topic: 19 year clusterhead now drug free! (Read 3964 times) |
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evilchopper
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Hi,
My name is Chopper, I live in a suburb of Chicago, I am a 37 year old male, a 19 year clusterhead, a 17 year chronic clusterhead, and for the last 5 years I've had migraines on top of the clusters. My first two years were episodic, but quickly turned chronic. Things have continually gotten worse for me, with every therapy I have tried they keep coming back worse than ever.
I've been through all the brain scans CT, MRI, and tried every drug and therapy currently available (and even some that may never be available due to their controversial nature.) Through 5 general practicioners and 4 neurologists, one opinionated nurse(my Mom), I didn't even have an understanding of the basic mechanisms involved in clusters.
Sometimes I would have no temporary relief from the cluster pain for days at a time, just wave after wave after wave, and if there was temporary relief, it was soon interrupted with a flashing aura and then a 20 hour migraine with all the water works(vomiting/diahrea). Occasionally I would have some cluster waves within my migraine.
The only treatment that provided relief was the sumatriptans, and that only After 15 years of continued suffering. I thought I had my life back since I could successfully use them to treat the pain, but soon even their effectiveness waned.
I understood that the latest research has revealed extra gray matter in the hypothalamus and leads many researchers to believe that cluster is a brain defect of some sort, and that there may never be a cure.
I also felt that my cluster pattern was more severe than most with the chronic form of this affliction, and I aimed to find out why. Maybe I could reduce the affliction to just a periodic, or at least a less severe form of punishment. I could maybe never find the reason I had clusters, but if I could find the reason mine were worse, then it's more than anyone else has been able to.
Due to the chronic clusters I had dropped out of law school in my 3rd year, and was unable to hold a job any longer, and soon my insurance dried up, and at $20 ea. for Imitrex pills, my bank account was quickly drying up also. The only thing there wasn't a shortage of was pain. I've pushed my cartoid artery so hard for so long that my finger is now bent 1/4" inward when held next to the other hand.
Well I couldn't take it any more, so I began to search like a mad scientist, (technically my degree is in physics, and I'm quiet fluent in chemistry and mathematics also, but these are a far cry from medicine and bio-chem! However, we all use the scientific method, I was just lucky enough to be my own guinea pig.)
I made a few observations along the way, actually they are more like clues, but I failed to see their relevence when all I could think about was getting immediate relief.
That's it for post number one, there's more coming in a bit.
Please bear with me, this could get long, but I did finish my Eagle Scout before my clusters really took hold, so I promise I'm telling the absolute truth, with a minimum of artistic license. I am not pitching a product, I am just a person who has spent a lot of time suffering in solitude. I've lost 19 years of my life to this affliction. I believe there is hope.
If there was a smiley with a knife in his eye, I would use it here.
-Chopper
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #1 on: Sep 2nd, 2004, 6:32pm » |
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This is my second post and is a continuation of my first post:
I made a few observations along the way, actually they are more like clues, but I failed to see their relevence when all I could think about was getting immediate relief.
I noticed that the re-emerging pattern of each episode was wavelike, first smaller waves, then slowly increasing in intensity on each wave, and then reaching a crescendo, before retreating in the same manner. This seemed very similar to peristaltic action.
I noticed some foods seemed to trigger headaches, but there was never any rhyme or reason to it when charted and analyzed, I had no direct connection.
My doctor had remarked once that the only thing out of the normal on my blood tests was 'high alkalais'.
I noticed some standard sypmtoms I had were similar to immune system responses.(lacrimation of eye and nasal passage for instance)
I also had other symptoms which I had not mentioned as I felt they were insignificant,(not to mention humiliating!) Digestive problems, which I'd had since I was ten, like hemmoriods, which occasionally bled, some occasional diarhea, cramping, occasional vomiting.
I had always attributed the stomach problems to medication that I'd taken since I was 7, specifically penicillin, every day from age 7 to 16, at which point my doctor put me on a stronger antibiotic (minocin) at a high daily dose.
I noticed the immediate effect alcohol has in triggering a cluster episode.
I also noticed that there were additional syptoms I was having that I did not see in any research or literature for clusters.
Heart palpitations.(I had attributed these to a suspected mitral valve prolapse that may have developed during a bout of rheumatic fever at age 7.)
I was always having warm flashes.(I had always attributed this to my medication)
I had excess phlegm after meals, and the worst heartburn you could imagine, sometimes if I belched, I almost choked because the burn was so bad I couldn't breathe.
My mouth was always dry and stringy. (which I attributed to the massive amounts of lithium I was taking) I couldn't seem to keep my mouth irrigated.
My teeth were not white anymore and seemed to decay even though I regularly brushed flossed and saw my dentist. They were not yellow on the surface, but kind of seemed off colored greyish translucent inside. The decay was below the gumlines mainly.
My diet was also poor, coffee, lots of meat, lots of bread, and lots of sauce. However the only solid connection I could make was with alcohol, probably due to the immediacy of the cause-effect.
Oddly enough, I noticed an inability to concentrate like I used to be able to in college and law school. Sure I was still quick witted, but I had trouble working with complex differential equations(which I used to be able to factor completely in my head), I had difficulty in carrying complicated lengthy trains of thought when trying to apply convoluted legal theories to pertinent fact scenarios,(which I used to be able to do effortlessly), or even occasional problems with simple word recall (like I was drunk or something.)
Like many cluster sufferers I also smoked and drank, quitting drinking upon realizing the connection.
Well, this has gotten very long but I feel I've got to tell my story, in case it might even by error help anyone either relieve their pain, or at least carry on the fight, moment by moment!
I am not selling products, this is not an ad, I am not a doctor, I am just sharing my personal struggle which has lasted for almost 20 years now. Now I am almost pain free with an occasional light cluster here and there, and full blown episodes if I drink alcohol, so I know I'm still "cluster positive" for lack of a better term.
My path of learning was one of learning from my mistakes, and without my mistakes I would still be taking over 1500mg Lithium/day(talk about vegetable, call me smiley), 120mg amitryptaline hydrochloride/day(call me sleepy), 120mg beta-blockers/day(lowest BP in town), 200mg sumatriptan/day(I was glad to pay the price when I could afford it).
Now I am clean, no drugs! No more big oxygen tanks to lug everywhere, no more painful experimental treatments, no more suicidal tendencies!
I'll start tying in the individual elements mentioned above and how they tie into the 'big picture' of leukortriene chemistry and the vascular system and the immune system and how they set the stage for ideal development of clusters into chronic clusters in my next post. It gets very complicated, but anyone who has a taken a college level chem or bio course should be able to follow along with out any trouble, and maybe even correct me on a few things.
Anyway, even if you guys think I'm a nut, it really does help to share our experiences and realize that we are not alone, even if that is how we spend the majority of our cluster time.
More Soon,
-Chopper
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Superpain
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Re: 19 year clusterhead now drug free!
« Reply #2 on: Sep 2nd, 2004, 6:42pm » |
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And???
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Chris
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don
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Re: 19 year clusterhead now drug free!
« Reply #3 on: Sep 2nd, 2004, 7:09pm » |
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Get to the point chopper.
Whats this going to cost me?
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Kris_in_SJ
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Re: 19 year clusterhead now drug free!
« Reply #4 on: Sep 2nd, 2004, 8:00pm » |
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Huh? .... So? ....
Kris
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IndianaJohn
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Re: 19 year clusterhead now drug free!
« Reply #5 on: Sep 2nd, 2004, 8:01pm » |
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I smell something fishy... 
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Did my brains fall out or is this headache over?
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BlueMeanie
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Re: 19 year clusterhead now drug free!
« Reply #6 on: Sep 2nd, 2004, 8:13pm » |
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Rut-ro. Sounds pretty convincing so far. 19 year Clusterhead gone PF. O.K., time to tell us your secret now.
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #7 on: Sep 2nd, 2004, 8:31pm » |
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I am not selling anything, just telling my story. If it helps you, then great, but my specific circumstance was that I improved my condition by fitting together a bunch of small pieces and seeing the big picture. Instead of trying to implicate one cause, I was able to see how several smaller seemingly unrelated factors affected my health. I grew sick of treating the symptoms, so I began looking for the causes. I did not find the cause of cluster headaches. I found why mine spiralled out of control so quickly and never relented for so long.
The never relented because I didn't fully understand my symptoms, and what they were telling me, for instance, I thought I had rebound headaches too, but they turned out to be migraines. I never thought they were migraines, because they seemed a minor nuisance compared to 12 hour cluster attacks, but soon they featured explosive auras that left me blinded for hours. I will tell you how and why I feel I developed migraines, and why they appear concurrently with only the most serious cases of chronic cluster.
Now with a better understanding of the vascular system, the immune system, and leukotriene chemistry, I was better able to understand why certain foods were triggers, and that even thought there seemed to be no immediate connection, they influenced certain levels in the blood, which in turn influenced vascular stability.
For example, I was simply able to modify my diet and daily activities to minimize the devastating effects of cellular level oxidation.
I am not a doctor and do not feel comfortable getting into the specifics with out telling my whole story so you can see why I came to certain conclusions. This is not medical advice or an ad for anything, I'm just here to explain the process I went through in determining how to approach the treatment of my condition.
It may be that it's a complete coincidence that my chronic cluster condition disappeared due to my changes, but all my other symptoms disappeared too, and not mysteriously either. I now have rhyme and reason! I now love to wake up in the morning.
I promise more soon! I hope it helps. It's free.
-Chopper
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #8 on: Sep 2nd, 2004, 9:04pm » |
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Here's a bit of background that helped me to further understand cluster pain.
It is undisputed that certain blood vessels spasm uncontrollably during cluster.
I found that there was some relationship between my digestive system and my cluster mechanism, so I proceeded to learn more about how the digestive system worked, and how the vascular system works.
I learned that blood vessels can spasm for many reasons, and there are many small chemical processes that occur between organs and the bloodstream that can influence the spasming.
I also learned that there are two types of spasming, contraction and dialation. I learned that if your blood ph was too high or too low, spasming could be triggered.
I also learned that blood ph is dependant on several factors including leukotrienes.
What are leukotrienes? I learned that oxidized fats that are manufactured by the lipoxygenase enzyme when it encounters things like dietary fats from farm animals that have been fed soy and corn.
OK, here is where it gets tricky, and this is only 1 small part of the whole picture:
This manufacturing of leukotrienes is very explosive. It uses all your chloride reserves, which in turn frees up the element sodium(which is usually paired with chloride as salt!) The sodium in turn binds to the primary acidic buffer of blood, carbonic acid. The blood is now acidic, and reduces things like B12 absorption and influences cellular oxygen content. Remember too acidic blood can cause spasms of blood vessels, and that my doctor indicated my alkalais were high(acid blood!)
Little did I know that my favorite foods like chicken and beef could be influencing the severity of my clusters.
A little experimentation seemed to help a lot, but the picture was far from complete, remember I had migraines too which, if the above is true, would indicate that the blood was not acidic enough(too basic). Well this will be resolved later, I promise.
I didn't want to get into specifics without detailing my whole history, but I don't want you guys thinking I am here to string you along. This is just the beginning of my story, don't run out and say you know how to cure clusters now, you'll see why this was actually a very small part of my story. I am not a doctor, just a guy who was able to put the pieces together for myself. Much of this information I have gleaned from medical journals and medical websites, I just applied it to myself and my lifestyle. Chicken and beef are not bad, or evil or dangerous, but they are one piece of my puzzle of pain.
-more soon
-Chopper
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Virginia
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Re: 19 year clusterhead now drug free!
« Reply #9 on: Sep 2nd, 2004, 9:13pm » |
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OMG! Is there an end to this?
Have you told us what you did to stop the headaches yet? My eyes glazed over quite a few paragraphs ago...did I miss it?
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The Clusterhead formerly known as 9erfan.
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BlueMeanie
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Re: 19 year clusterhead now drug free!
« Reply #10 on: Sep 2nd, 2004, 9:19pm » |
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on Sep 2nd, 2004, 9:13pm, Virginia wrote:OMG! Is there an end to this?
Have you told us what you did to stop the headaches yet? My eyes glazed over quite a few paragraphs ago...did I miss it? |
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So far i think you're not suppose to eat chicken or beef.
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #11 on: Sep 2nd, 2004, 9:23pm » |
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I felt that if I could improve my digestive system, that maybe I could find additional relief from my cluster pain, I had always felt there was some connection but could never put my finger on it.
I did experiment with increasing my fiber intake, and for a month I even took two spoonfuls of activated charcoal each day, since I found information on the web that this method was used to 'clean ones colon'.
Upon taking the charcoal, I noticed that I felt like my blood pumping through my veins and arteries felt cooler(I know it sounds crazy but this is the best way to describe it, it was only a sensation, but an enlightening one) usually I felt hot, always sweating, like my blood was red hot as it was pumping through my body, but my body temperature was always normal.
After the month, my clusters returned again, as did my hemmoroids, but this reinforced my idea that somehow my colon was somehow involved with my clusters. The significance of the charcoal will also be revealed soon as well. I do not suggest that you go buy charcoal, this will not cure your headaches, it just helped me link together some of the major players in this game. Remember I am not a doctor, I am not selling anything for anybody, I have not even told my story to my last doctor, since he laughed when I once asked his opinion about what finally turned out to be the primary culprit! This is all about education, and sharing! This is only the beginning of my quest, remember, I have been on it for 19 years, please be patient, there is no miracle cure, and I will be as honest and truthfull as I can in telling my Whole Story(even though it will get humiliating for me.)
-more soon
-Chopper
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #12 on: Sep 2nd, 2004, 9:35pm » |
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It seems you are all speculating too soon. Nothing is wrong with eating chicken or beef. Don't draw any conclusions till you hear of my whole ordeal. That was the very reason why I must present my whole story, so you wouldn't just try and grab a miracle cure out of it.
In fact if you aren't going to read the whole thing carefully, then don't read it at all! I've got nothing to lose. I'm humiliating myself so you may learn what I did, and maybe you can see if anything applies to your situation. There is nothing to buy, nothing ridiculous you have to do. But if you draw conclusions prematurely, you will certainly proceed in the wrong direction, because like I said earlier, I learned from my mistakes. I feel excluding chicken or beef would be a mistake! I eat both chicken and beef.
I can remember leaving my doctors offices with new prescriptions in hand, only to find the effectiveness wore off within a few weeks. I just wanted a cure, and fast. Well there is no cure, but you can take many steps to reduce the factors that increase the frequency and severity of these episodes. I'm trying to relate to you which things I have found make a difference.
-keep reading, I've got 15 more years of suffering to share with you- no gimmicks, really.
-more soon
-Chopper
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #13 on: Sep 2nd, 2004, 9:52pm » |
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OK here's the humiliating part: In an effort to cure my hemmorroids I bought some prep h suppositories. Within minutes of inserting the first one, I felt an extremely strong bowel movement, but having just had one prior to the suppository I resisted. Soon I began uncontrollably vomiting and had uncontrollable bowel movements which actually pushed part of my colon/rectum outside of my sphincter. This continued for several hours, and upon consulting my mother who is a RN, we concluded that I had more than hemorroids, perhaps a spastic bowel.
Ok, now my colon is spasming as well as the blood vessels in my head.
This was another piece of the puzzle and I started researching spastic bowel, IBS, Colo-rectal cancer, etc.
I stepped up my diet of fiber by eating oat meal everymorning, I cut down on sugar, caffeine, and other things that could be problematic to intestines and such.
This alone did not do much to alleviate anything, but I kept searching for anything that might provide a glimpse into what was going on.
I felt it couldn't be cancer, as my family has no history, and I've had this condition untreated for at least 15-16 years.(mainly manifested as occasional bleeding hemmoroids, but often diahrea and vomiting as well)
My digestive problems began when I was much younger, about 10-12years old, I assumed it was from the antibiotics I was taking, and it kinda was, but not in the way I thought.
It's not near over yet, the best is yet to come, really, no gimmicks, I promise.
-more soon
-Chopper
p.s. I would have put this all in one post if I could, but the BB doesn't accept it if it is too long, and since I'm just typing this freehand off the top of my head, it is best that I split it up. If it is too long when you I try to submit or preview it, the BB erases it, another thing I found out the hard way.
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don
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Re: 19 year clusterhead now drug free!
« Reply #14 on: Sep 2nd, 2004, 9:54pm » |
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At the age of 2 when I................zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz zzzzzzzzzzzzzzz
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E-Double
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Re: 19 year clusterhead now drug free!
« Reply #15 on: Sep 2nd, 2004, 10:09pm » |
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on Sep 2nd, 2004, 6:24pm, evilchopper wrote:
If there was a smiley with a knife in his eye, I would use it here.
-Chopper |
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Here take this one...
Dude,
It's very exciting to have found a place where people can feel your pain.
Though all of us obviously feel you with the CH I don't know how many of us can empathize with having our entire lower intestines hanging out our ass and having it be cured by no longer eating meats which happened to also relieve you of your CH.
I am extremely patient as a man and have to be for my profession but please man....
Glad you feel well but get to it.
Sorry man I'm just a little lost by what you are trying to convey....
Still supportive though 
e
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| « Last Edit: Sep 2nd, 2004, 10:11pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #16 on: Sep 2nd, 2004, 10:19pm » |
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Seems you guys know everything already, I guess I can't help here, sorry to waste your time. I would've died for someone would have shared with me why my headaches were worse than normal. But no one did, so I suffered for 19 years till I figured it out for myself.
And now I get mocked for it? I thought this forum was for sharing information so I came here to tell you how I helped myself, but apparently it is not, so I must take some time to deliberate and rethink sharing anything here.
This was not a sales pitch, I don't have anything to sell, I did everything without spending a penny. And all you can do is criticize me, and be suspicious of me.
I'll be back to tell you more of how I found a systemic infection that even doctors couldn't find. I found out what caused it, how to cure it, and why it happens, and all I get is smart comments.
Well enjoy your headaches tonight, you all seem to be very happy with them is the message I'm getting loud and clear, as for me, I'll sleep peacefully and not be awakened in the middle of the night with a stabbing pain to my eye socket ever again.
I'll be back tomorrow to post more unless there's a bunch of smart aleck remarks. I'm not selling anything, get it, there is no catch, I'm just a regular guy, and I'm being pretty darn generous.
I've done things like putting zostrix up my nostril(yeah, capsaicin, it burns like heck), chinese accupuncture, chiropractors, you name it. I've spent over $22,000 on doctors, blood tests, exams, scans, drugs. Addicted to stadol, overdosed on narcotics, anything in the pursuit of relief. I'm seriously offended by your smart aleck comments. If you don't believe me, then don't read, but don't spoil it for someone who may be helped. If you want to criticize then wait till I'm done and present your conflicting information in the form of a rebuttal, like an adult.
-Chopper
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Jonny
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Re: 19 year clusterhead now drug free!
« Reply #17 on: Sep 2nd, 2004, 10:27pm » |
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on Sep 2nd, 2004, 10:19pm, evilchopper wrote:
I've done things like putting zostrix up my nostril(yeah, capsaicin, it burns like heck), chinese accupuncture, chiropractors, you name it. I've spent over $22,000 on doctors, blood tests, exams, scans, drugs. Addicted to stadol, overdosed on narcotics, anything in the pursuit of relief. I'm seriously offended by your smart aleck comments. If you don't believe me, then don't read, but don't spoil it for someone who may be helped. If you want to criticize then wait till I'm done and present your conflicting information in the form of a rebuttal, like an adult.
-Chopper
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Hey Jackass,
If you think a lot of us have not tried these things you are way mistaken.
How about putting your posts on tape and mailing them out?
.....................................jonny
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E-Double
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Re: 19 year clusterhead now drug free!
« Reply #18 on: Sep 2nd, 2004, 10:31pm » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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don
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Re: 19 year clusterhead now drug free!
« Reply #19 on: Sep 2nd, 2004, 10:44pm » |
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I'm not sure I have that many birthdays left.
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evilchopper
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Re: 19 year clusterhead now drug free!
« Reply #20 on: Sep 2nd, 2004, 11:06pm » |
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Yeah, I guess you do know it all and have tried everything, so why are you reading if you are so pompous and knowledgable?
Because you still have cluster headaches, and I don't.
I guess that's why I'm up here preaching and you are not.
If you had anything worthwhile to offer you surely haven't shown it yet.
I do have something worthwhile. I have taken the initiative to help myself while you sit here and sulk in misery, forgive me for sharing my story.
I only mentioned some of the things I did to show that I have been where you're at, angered and confused and humiliated, not to show I'm a badass or something. I hated chopping up imitrex pills into a powder I could ingest nasally, just so they would last a few days longer than taken orally. Some thought I had resorted to illegal drugs. I hated losing my job my fiancee, and my life to this monster. I hated the fact that when I originally was diagnosed there were no effective drugs for the treatment of cluster. I went through years of full intensity cluster pain with no treatment but hot water or ice or banging your head against the wall. I hated burning my face on a hot iron that somewhat releived the pain when applied to the surface of my face. I hated blacking out from pressing on my cartoid so long I lost consciousness.
I had no indication of spastic bowel until years into my journey, it was not the cause of my clusters, but what caused the spastic bowel is highly implicated in my cluster headaches.
Just keep on treating the symptoms like I did and eventually the true cause will take out other organs like it did in my case. For years I had no clue, much like yourself, but I wasn't pompous about it. It was killing my liver, lungs, brain and other important organs, according to one doctor, I supposedly had diabetes(which I didn't) and for years I was clueless, much like yourself, but I didn't just cry about it on some forum like you do.
Maybe you should change the name of this forum to "Poor poor pitiful me" because that's the impression I'm getting.
I apologize to anyone who may have taken interest in my story, but I am just a regular guy who was excited to share what I found because you could adjust your habits quite easily and at no cost. Nothing to buy, I don't want your money, but you have my pity.
At least I can say I tried, I was beaten down, but I tried. I was able to help a couple of my friends locally, and now we all lead mostly normal lives, so I thought it was safe to share with you.
I did not want money, or I would have written a book. (or tape) I have no desire to profit, and now I have very little desire left to help you.
When studying physics it was easy for me to understand relativity, or quantum physics, or atomic physics, or nuclear physics, or optics, but I fail to understand your attitudes, in fact I'm baffled and confused.
Now I see why there is very little information available on cluster headaches, nobody wants to waste their time helping someone who is hostile to them. You chase everyone off who even tries! Well I've heard your message, it was not wasted on me. I'll save my story for someone who really is interested in helping themselves. Enjoy your pain in your bitter selfishness.
-Chopper
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Kevin_M
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Re: 19 year clusterhead now drug free!
« Reply #21 on: Sep 2nd, 2004, 11:07pm » |
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Another one who has not only an answer but also the has the power to refuse service to all those with no shirt, shoes, or ability to nod politely.
I better step outside so I don't ruin it for everybody. Besides, I thought I saw a fire engine go by. I'm gettin' my bike.
Kevin M
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JDH
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Re: 19 year clusterhead now drug free!
« Reply #22 on: Sep 2nd, 2004, 11:27pm » |
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Can't wait till the hurricane is over and Floridian sees this 
Jim
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eyes_afire
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Re: 19 year clusterhead now drug free!
« Reply #23 on: Sep 2nd, 2004, 11:36pm » |
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E-Double
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Re: 19 year clusterhead now drug free!
« Reply #24 on: Sep 2nd, 2004, 11:36pm » |
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Alright Chopper here it goes....
Fom a scientist and an educators perspective when one is trying to convey any message you must get to the point as clearly and concisely as possible.
Especially when trying to convey a message that can potentiallybe "helpful" and replicable.
It is beyond fantastic that you have found relief but one thing that you need to know and something I learned very quickly is that when we are in cycle ya kinda need to make things salient. Get to the point
This is not being rude just a suggestion.
It's just been a little difficult to follow.
Good luck dude
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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