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Title: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 19th, 2003, 12:25am Hi everyone, Here is a brief introduction to me and my ECH history I am a white male, 31 yrs old. Blonde hair green eyes, thin build. Cluster type: episodic, normally once every year or 2 years, in the Spring. Lasting for about 2-3 months of 1-3 daily headaches Always occuring at about 11am, 2pm and 4 pm. Most happen around 1pm. The individual headaches normally last from 1 to 3 hrs. Peak cycle ranges up to 9 or 10 on the kip scale, i cant see light, cant sit still, have to be alone, get an aura, burning behind eye, and intense lightning like jabs of temporal pain - usually I rock, contort and rub my scalp in a vain attempt to give me something to focus on other than pain and pretend that i have some control over something. I can remember having cluster headaches start up around age 19. Like many i thought it was some kind of sinus infection or problem. It seems like the early clusters were weaker - so it thought the sinus medication was working. At one point i thought it was caused by my teeth and had some dental x-rays taken. The prescribed me something to "dry my sinusus up" which had no effect on the headaches. In my mid 20's the pain got worse, registering an 8 on the kip scale. I never had health insurance and never went to a doctor during this time. I just dealt with it, i had never heard of "cluster headaches" and was not even sure i had migraines yet. I was starting to see the cycle though and understand that it would go away eventually for another year or so. I tried some medications that friends and family gave me to help the pain. Valium, xanax, lortab all had no effect other than making me sleepy and a tiny bit more dislocated from the pain. I thought for a while that i had tracked the trigger to being lack of vitamin C, because i noticed that some cycles had come when i ran out for a month. Probably just coincidence. in 1998 and 2001 the clusters were at PEAK PAIN. It was horrible because i had just landed a nice corporaate webdesign job. I ended up spending a lot of time in the bathroom or a back hallway trying not to scream or freak-out. A few times a cluter came while driving and i had to sit in a parking lot for 2 1/2 hrs and then go in and explain it to work. Shitty. Im also a saxophonist and a few times they hit at gigs which was terrible. Started keeping a diary of dates times and intensity. Got insurance and got prescribed 2 things (forgot what they were) but my cycle was ending so i didnt fill them. Plus i just hate to take meds of any kind - i try the natural stuff first. I have just recently started a new cycle, i'm 2 weeks into it and have been taking "migraactin" which has feverfew, magnesium, bioprene, ginko, and TMG. Seems to help a tiny bit ... like 10%, but it's hard to tell so early in the cycle. Also been reducing my sugar intake and drinking a big cup of black coffe right before cluster time. Wanted to say some of the stories on here brought tears to my eyes. Cluster pain is something that only clusterheads can truly understand. I wish you all luck in finding the appropriate treatment. |
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Title: Re: also meant to add Post by michaelc on Mar 19th, 2003, 12:43am 4 other things i intended to mention earlier. 1.My headaches are on the Right side. it is accompanied by nasal swelling and pain in my teeth, jaw and face. 2. i have a knot in the back side of my neck that becomes hard when the cluster is happening. I read this mentioned as a common trait somewhere on here. What is that thing? 3. i read mention of studies on sleep patterns of CH sufferers. I have always been nocturnal, stay up till 3am. My headaches have generally been at 1pm, but have had a stray one at 1am too. 4. Also saw mention of temporary lowering of cognitive scores during CH cycles. I have noticed this in myself ... not sure what it is from. I feel exhausted from the pain and self-restraint necessary not to go insane. After it's gone i feel "burned out" and exhausted. |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by suzy617 on Mar 19th, 2003, 6:38am Hi Michael, Welcome to the board. You speak of taking pain killers but they do not really help CH. I dont know if you still dont have insurance but if you can afford to do so, you should see a neuro and get the proper meds that might help you such as imitrex and 02, many here have had great results with them. I wish you luck, suzy |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by cbolony on Mar 19th, 2003, 8:30am michaelc on the left side of the board click on medications and take a look of what some of the members are taking OTC meds are not going to stop the pain.I like imitrex injections stops the pain in about mins.but they cost a lot of money.Preventative meds like verapami and prednisone do not cost that much money if you have no insurance |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by achinghead on Mar 19th, 2003, 9:08am welcome aboard!.. I too am new.. been here going on 3 weeks. You will find that the ppl here are soooo helpful and they do care. I sure lucked in to the best site on the web. Seems that the info and ppl here are more caring and insightful than any of the neuro's Ive ever been to. Ive suffered for 16 yrs now and im 39 yrs old. My CH's are very simuliar to yours.. GOOD LUCK and make sure you make this site your favorite. oh .... and dont befraid to ask anything on here.. you will get an answer |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by CJohnson on Mar 19th, 2003, 9:37am How do? I'm 30, 10 years episodic, and my symptoms are also similar to yours, except I don't stay up late, and I get them at night. "and dont befraid to ask anything on here.. you will get an answer" The above is true, however, I would advise NOT asking if Cluster Headaches and Migraines are the same thing. They are not. And that fact will be illustrated with much vehemence. Good luck, -Curtis |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 19th, 2003, 12:46pm Hey! thanks for the replies ... and yes, Cj - i know that it's almost an insult to confuse a cluster with a migraine, i feel the same instinct. It's like "no this is NOT the same thing" I don't have the money to see a neurologist at the moment. Im a jazz musician and artist - lol. Not making a whole lot of cash right now - just trying to keep my car running & rent paid. I tried the standard pain medications years ago, with no real effect. Most of what i have read on this board so far sounds like many of these newer more targeted medications don't help people that much and come with unpleasant side effects. Most people seem to go thru quite a few before finding something that helps. By the time i try a dozen meds my cycle will be over. My cycles are luckily spaced up to 2yrs apart, so i really only get desperate 1/2 way into the cycle - when my daily beast-battles have drained my will. Can a normal doctor prescribe immitrex? or do i have to see a neurologist? thank you all! this board is great .... just to know i'm not alone in dealing with this helps! michael |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by Edna on Mar 19th, 2003, 2:27pm Hey Micheal, sorry you have the need to know us, but you're offered a HUGE WELCOME to our home No, you do not need to see a neuro only.......I myself have been a sufferer for over 25 yrs. and my general practioner is who helps me through with my meds....advice though, if you can't get one that is willing to work with you.......move on to somoeone else......YOU NEED to find some kind of treatment that works for you............many ppl have different things that work, so it may take time and effort when out of cycle to find that for yourself too. aching head: glad to have you aboard too, must have missed your entrance somewhere when you did come in........glad to have you here too......you seem to be one smart cookie aboard with us. Good luck to you both, and wishing at least pf moments, EDNA |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by cbolony on Mar 19th, 2003, 2:30pm Quote:
yes imitrex pills cost about 12-15 dollars each.imitrex spray i think $80 for six.imitrex injection statdose which have two injection in them are $140 that why we use the imitrex tip.Since you cycles are 2 yrs apart try preventative meds like verapami and prednisone very cheap verapamil about $10 for about 90 pills 240 mgs should keep the beast at a lower kip.There are post about verapamil and prednisone combo its worth reading |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 19th, 2003, 3:30pm I am so amazed .... i have been reading the posts on psilocin therapy. Funny thing, befor this cycle started i obtained some mushrooms I was going to eat - it's something i do about once a year. (grew up in mississippi - where they grew wild, great fun when i was a teen) BUT i had put them away when this cycle started ... i have always had a dreadful fear of getting caught with a CH while tripping. So i always kept the mushrooms seperate from my CH cycles. I would never in a MILLION years have guessed that it would have some positive effect on ECH. Though after reading about the specifics of ECH and the abnormality found in the hypothalimus (biological clock) it makes total sense that mushrooms/psilocin would work, i have known for a long time about the chemical similarity between serotonin, meaotonin and psilocin, AND that psilocin can help balance serotonin levels in the brain. Hmmmmmmm...... I will try anything but i would have never tried THAT, it's counterintuitive. NOW i am going to have to reconstruct a timeline of my ECH cycles and look at when my mushroom trips have been over the past years - see if i can notice and effect. I do remember that I tripped 6 months before my cycle in 2001 - but that was the last time. it's been almost 3 years since i have taken mushrooms .... i cant think of a better reason than possibly breaking this cycle! |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by K. on Mar 19th, 2003, 4:04pm Welcome to the family Michael. Sorry you're a clusterhead but there is great support here. Just knowing you're not alone makes a huge difference in being able to deal with the beast. I hope you find something that works for you soon! Wishing PFDAN Karen |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by Charlie on Mar 19th, 2003, 8:32pm Welcome to the fold. You'll find all kinds of good ideas here and some of our ideas are helpful. I hope this one is: Dr. Wright's Circulatory Technique: This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by cootie on Mar 19th, 2003, 9:42pm Hi michealc.......hope you find the help you need..you shoud here.....Pam-Coots-that-jus-says-welcome |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by Kcir on Mar 19th, 2003, 10:37pm michaelc, Have u ever tried oxygen? It really work good ;D ;D ;D at least for me. O2 is soo cheap I don't even turn it in to the ins. And no side effects. :D :D ;D Rick T |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 20th, 2003, 1:09am Hi to all the people who have wished me well! Charlie, Thanks for the circulatory technique info!! That sounds like it could really help, it's very much like the Yogi's who learn to control what are normally automatic body processes, like heart rate, digestion or temperature. I have read a lot about mind/body interaction so i think i can do it, if you just tell your brain what to do - it will TRY! and thanks rick ... so i don't need a perscription for oxygen? What do i do? just get a tank and mask? I will go back thru other posts on this topic and learn more! but in the meantime i have decided to try the mushroom technique - because i dont have the money right now to see a neurologist (im an artist and jazz musician-no insurance) or buy expensive meds, BUT do have about 5 grams of mushrooms on hand - I'LL TRY IT. Probably tomorrow night. Some of you may already know that there is a clinical trial underway at PRESENT - Approved by the FDA ;D to treat patints with OCD (obsessive compulsive disorder) with psilocybin. Unlike ECH, OCD patients require a full-dose psychedelic trip to relieve their symptoms. If anyone is wondering, in spite of taking a hefty dose, no one at the trial has had any problems with the psychedelic effects so far. Since there is a growing body of antecdotal evidence on this BBS for psilocin and ECH, it might be possible to get this one on the next trial, especially if the OCD trials yeild positive results. The prblem is money - MAPS barely scraped together the funding for the OCD research. Part of the point of mentioning that is to let concerned group members know that the FDA feels psilocybin has enough potential for testing, and is 'generally' considered safe by medical specialists familiar with pschedelic research. ~michael |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by firebrix on Mar 20th, 2003, 2:16am Welcome michaelc! Good to meet you but sorry you needed to come here. I'd like to reiterate the Oxygen thing - used with a non-rebreather mask it can stop many headaches - you just have to get to it as soon as you feel a ha. coming. If you are going to try the shroom therapy, please read about it first. One dose may not fix a long term problem - it may take several doses about a week apart. Let me know if you need more reading matter on this therapy. Another muso! C'mon, tell us what you play! Wishing you PFDAN firebrix |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 20th, 2003, 3:42am hey Firebrix, I am going to try the O2 thing asap. From what i have read about mushroom therapy .... it can break a cycle, but some headaches still come thru ... i'd love to knock those out too. I have been thru at least 5 cycles of k10+ with no meds whatsoever. I only learned of ECH during the 2001 cycle. In some sick way i feel it has made me a stronger person. NOTHING could be worse than CH pain so other painful situations are easier to deal with after years of the Ultimate w/ no meds. Also during the long hrs of CHpain you have time to really get your priorities straight about what you'd rather be doing than writhing in anguish. ;) I'm actually coming into this situation with a great deal of background knowledge about the chemistry, theraputic (and stupid) uses of psychoactive plants. been a research hobby since i noticed on shrooms in hi-schcool that i was seeing the "pixels" of my optic nerve and it was not a 'hallucination' but an effect normally filtered out by the brain. I said ... "this is not at all like other 'drugs' i need to find out the scientific facts about what is happening here, becasue it's utterly fascinating" but i have always kept my occasional once-a-year psychedelic journeys far away from times when i felt even a twinge of CH. i was afraid it would worsen the pain. What a pleasant suprise. BTW, i like to go for a yearly level 4 or 5 mushroom trip. I am experienced and comfortable with the effects and safety of mushrooms and i really feel it helps me to "flush the mental toilet" and normally leaves me refreshed, inspired, optomistic and ready to tackle new challenges for a few months afterward. (hey, arent these the effects of good serotonin balance too?lol) I would hesitate to label my use of mushrooms as "recreational" because my motivation is not to Party or 'escape reality', but to gain a broader sense of what is possible within the mind(which is part of reality), to experience those infinitely-unfathomable, bottomless 3-d visions and bring back an idea or two & to purge various subconscious fears and anxieties that build up over time. AND NOW - quite possibly to ABORT my present ECH cycle. :o I hope it works i had three CH's today. |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 20th, 2003, 3:56am Firebrix lol, i forgot to answer your other question I play saxophone and flute (other winds too) and a little guitar. Live in Nashville - TONS of ppl to jam with here, its quite incredible. I play in a jazz/funk/fusion band, i can send a link to some mp3's sometime if you'd like. I have considered making some terrifying audio renditions of kip10+ CH pain on the saxophone ...... 8) ~michael |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by SommelierCH on Mar 20th, 2003, 4:56am Welcome michael, I have been an episodic (10 weeks, every 2 years; 1-3 a day, the Big One always when asleep, I am one of the lucky ones) Clusterhead (“We Wear Our Pain With Pride”) for 17 years. Every Doctor has called me a “textbook case” (not that any of them had seen a Clusterhead before, hence “textbook”) so I am guessing that my case is the “average” or the most common. In hopes that this can help you and any other new Clusterheads reading this, these are my experiences; remember, I am just another Clusterhead, I (like Svenn) am not a Doctor (although I heard that Svenn played one on T.V.). You do not have to see a Neurologist, to get relief. Any Doctor can prescribe what follows; the hassle is with the insurance co. If you don’t have insurance, for the triptans, at least get the 100% O2! ABSOLUTELY NO ALCOHOL (and I get paid to drink), it’s a trigger!!! MOST IMPORTANT: 100% OXYGEN, read all you can about it here. For the Big One, that always hits 15min-2hrs after I go to sleep (hint: don’t sleep) I do a Maxalt MLT 10mg. or Zomig ZMT 5mg (both are fast dissolving, triptan based, tablets, that enter your body subcutaneously, under the tongue, bypassing the digestive system i.e. fast) and hit the oxygen. This will take out the Beast in 7-20 min. (That is, if the wind is blowing in the right direction, and the sun isn’t in your eyes and your glove’s not too big). I will fill up the serotonin gates with shrooms the next cycle. But, always have a backup!!! Oxygen!!! Yes, it does hurt that bad, and only we know. Join OUCH, it’s free. Help us be counted. David J. |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by catlind on Mar 22nd, 2003, 1:02am Michael, Welcome aboard. You are certainly a very interesting person! I mean that in a good way :) I would cringe hearing a sax rendition of a kip 10 :-X One needs only suffer the pain once ;) I am very very curious and interested in your information of the OCD trials! I am someone who has thought long and hard about psylocybin therapy and it simply is not feasible in my life situation. If the FDA is running trials, that's a different scenario! I hope you find all the info you need here. Remember, when it comes to CH, good ole O2 is your best friend (or at least the best friend of most). I too have tried the migraplex treatments, (magnesium and b2 complexes etc.) and have had some minor success in prevention, but I have not yet found a suitable abortive for myself. Your symptoms closely model mine, other than I get between 3 and 8 headaches a day at peak cycle. The odd thing is that I was awakened by 2 things this evening. A bad dream and a CH. Dunno if there's some seratonin or melatonin correlation there, but it generally sux being up at this hour when my 2 year old is going to be up by 6. I have been relatively PF for a few weeks now, so this is truly an odd event. I shudder to think of going chronic. Anyway, as you will discover ;), I'm rambling. Welcome to the family! Cat |
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Title: Re: Hi to group from 12yr + ECH experiencer Post by michaelc on Mar 22nd, 2003, 3:07am thanks david j! I joined OUCH andi 'feel much better now' lol. Luckily I rarely drink anyway - maybe 3 beers in a month, so the alcohol thing is not a prob. Getting a perscription for O2 next week. Till then just chewing aluminium foil to take my mind off the pain. j/k ;) Cat, thanks for the welcome! I agree, going chronic is a terrifying thought, i didnt know it was possible till i came here, lol. I'm gonna put that one out of my head - too scary. Check on the meds board, i posted up a storm last night with some more medical psilocybin links. I drank some 'tea' tonight 12:30, we'll see what happens, Keeping my fingers crossed, lol. ps. I am under the "effects" right now, can you tell any difference? Maybe more LOL's, lol. ~michael |
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