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Title: Intro From A Newbie Post by ex_pat_asia on Jul 26th, 2004, 10:17am Hello all, I am delighted to have found this web site. Brief Intro: I have been a cluster sufferer for thirty years (since I was 27). Until recently I was attack free for three years. This most recent cluster cycle began about two months ago. It has now reached a point reminiscent of the worst cycles that occured during my mid thirties. I am getting 7 - 10 attacks per day, evenly split between nighttime and daytime. I am able to abort these with oxygen at 10 LPM. I had been using cafergot as a prophylactic drug and Immigram (sumatriptan) as an abortive. In this cluster episode the bouts appear to have reached a point of breaching these drugs. Occasionally I sense that the Oxygen simply holds an attack at bay for awhile, and upon resuming my normal routine it attacks again. I am curious if anyone alse has a simlar intuition about there own therapies. I have recently started sandomigran (pizotifen malate) as a prophylaxis and also started magnesium supplement at 800 MG per day after reading about it in a study published on the internet. On occasion I have been able to prevent the full bloom of a bout by applying pressure with my fingertips to the carotid artery. The reduced blood flow seems to reduce the amount of "invaders" that reach my pain receptors -- or so I imagine. However, this is only succesful with mild attacks which I can experience off and on depending on a variety of triggers I am susceptible to. These latter are the classic list and include alcoholic drinks, chocolate, MSG, and hard cheeses. Cabin pressure changes during air flights can also trigger the attack as can atomospheric pressure changes. A recent diving trip to Thailand may have been a key event in the onset of this cluster cycle. I have a new Rx arriving for Relpax (elotriptan) which is hopefully faster acting then the summatriptan I take now (immigram). Where I live in SE Asia the injectible drugs and nasal sprays are not available. I would be interested in any and all experiences but especially those with first hand experience with Relpax, Sandomigran, and magnesium supplements. Thank You All for a splendid web site. |
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Title: Re: Intro From A Newbie Post by floridian on Jul 26th, 2004, 11:14am Magnesium - I take two magnesium tablets (250 mg each, 62% of the daily value each), one in the morning, one in the evening. I try to do this through out the year, but am especially diligent when the temperature rises in May (my headaches have always arrived in July/August). If I was already in cycle, I would probably take 3 or 4 tabs a day. Magnesium can be a laxative - the oxide form more so than the chelated form. Magnesium IV is more effective, but needs to be done in a clinic or hospital. Magnesium may take time to fully work if taken orally. My suggestion is to start taking it in moderation and keep with it. B-vitamins may also be helpful. Does it help me? Hard to say. I was headache free in 2001 and 2003, but had other symptoms of being in cycle. I was also taking melatonin, 5-htp, tea, and turmeric to various degrees. So I don't know what helped me most. The past two years, I have been more proactive, using more melatonin and 5-htp at the first signs that the beast was en route (twitching eye, disturbed sleep, etc). So far this year, Pain Free. I am also taking a Chinese herbal preparation that supresses CGRP (which some researchers think is a key chemical in migraine and cluser pain). It is called Keishi-bukuryo-gan in Japanese (Gui Zhi Fu Ling Wan or Kuei-Chih-Fu-Ling-Wan in Chinese) or Cinnamon-hoelen combination. (cinnamon, peony, moutan, apricot seed, hoelen). Can't say if that helped me either, but no apparent side effects. I don't use triptans and don't know if it might interact with those or any other medicine. I also don't know that there is enough evidence to suggest it once the beast has arrived if it were to displace other preventives- I started it as a possible preventive when in remission. |
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Title: Re: Intro From A Newbie Post by Superpain on Jul 26th, 2004, 5:49pm What's up with all the ex patriots lately? |
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Title: Re: Thanks Floridian re: Intro From A Newbie Post by ex_pat_asia on Jul 26th, 2004, 10:23pm Thanks Floridian, I will look for more information on those natural medicines you mentioned. As I live in Malaysia with a large population of off-shore Chinese, I am able to get these natural preparations quite readily so I am especially grateful that you included the pinyin pronunciation. I will consider beefing up the magnesium but would like to read more. Superpain - I can't answer your question as to why you are seeing more ex-patriate traffic lately but it could be that search engine results are displaying links to the domain here that were not available before. It could also be that (at least here in S.E. Asia) we are in the midst of our hot months just prior to monsoon time. The conditions remind me a bit of the hot-dry season in California which almost always triggered clusters for me. Certainly hot weather, and any increase in airborne detritus seems to put me into the vulnerable state. Thanks again, ex_pat_asia |
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Title: Re: Intro From A Newbie Post by ExPat_jac on Jul 27th, 2004, 1:13am >> What's up with all the ex patriots lately? Answer (ala Lettermans Top Ten List.....) 10. the states are getting scary...so we're all leaving 9. Dealing with clusters wasn't enough of a challenge, so we add the stress of living in another country 8. Everyone thinks we're freaks when they see us in an attack, so we figured that at least in another country, they would *expect* americans to act like freaks 7. All the call center jobs have been exported to India, we're just following them 6. After the tobacco companys lost their suit, cigarette prices have been so high most CH's were forced to move out of the country as most are smokers and could no longer aford their habit.. 5. The possibility of magic mushrooms being a cure has forced suffer's to move to more friendly countrys where the possibility of using this cure exist. 4. People that don't speak out language and know our culture think that the CH dance and bangging our head aginst the wall is just our form of "Greeting" 3. We've tried all the local doctors, now we're branching out to 3rd. world countries where there are still Witch Doctors we haven't tried. 2. In Post 9/11 it is just *such* fun attempting to carry Imitrex and self-injectors across the border at major air-ports. And..the number one reason reason for "What's up with all the ex patriots lately?" 1. It's just so cool to do the CH dance with new music! |
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Title: Re: Intro From A Newbie Post by ExPat_jac on Jul 27th, 2004, 1:25am >> increase in airborne detritus In 4 words you have just summed up this country! Peace.... jac |
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Title: Re: Intro From A Newbie Post by ex_pat_asia on Jul 27th, 2004, 1:59am <<In 4 words you have just summed up this country! >> Yessiree Bob...uh Jac... you are right about that one. We get it this time of year from Sumatra but it hasn't been as bad as previous years. I think S'pore & Malaysia got together and sent them tools and technology to deal with it. There was one day a month ago where they counted 81 hotspots. It is a regular feature in our weather report. Egads man...81 hotspots!!! No need to break open anpther pack of cigarettes ... that is for sure. Peace on you too :)[smiley=laugh.gif] |
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Title: Re: Intro From A Newbie Post by ExPat_jac on Jul 27th, 2004, 2:19am I really had not realized just how bad it was till last weekend. I had to fly out to Singapore to handle a VISA situation, upon arriving, I was amazed at how clean the city (and air) was. Upon checking into my hotel, and getting into my room, I open my bag (I was only there for two days so just carried a small trael bag) and was hit with the POWERFUL stench of Jakarta!!! You know, that mix of tobacco, mothballs, smog and sewage! Egads man, I liked to faint!!! My sence of smell gets hightened during an attack, so when my head hurts, this city just kills me! And we think we have pollution back home! A clean day here makes LA in it's worst times seem like a spring day in the country! peace... jac |
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Title: Re: Intro From A Newbie Post by FZfan on Jul 27th, 2004, 7:48am on 07/27/04 at 01:13:59, ExPat_jac wrote:
LMAO! That was great. Oh, and welcome to clusterville to both of you ex-pats. Ex_pat_asia, have you tried upping the lpm on the o2 to 15? And are you using a non-rebreather mask? Could be you're not getting enough pure o2 into the lungs. Is it hard to get hooked up with o2 over there? 7-10 attacks/day is really tough. Hang in there. |
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Title: Re: Intro From A Newbie Post by ex_pat_asia on Jul 27th, 2004, 12:09pm Thanks for the welcome FZ - ExPat Jac's top ten list was funny, I agree. He will like the "top ten ways to determine whether you have been in Asia too long" I'll post it on the humor page tomorrow. For now I am signing out. I've just spent the evening in a running skirmish with the "beast". He snuck up on me while I dozed sitting up in my desk chair...yes..I am pretty fagged out after all the sleep disruption. This is the part I hate the worse...when you get to that point during an episode where even between bouts you feel like crap. That when you have shadows hanging on between bouts, and you can barely get out of the chair to pace when the bugger re-visits your head. I will take your tip on Oxy at 15 lpm. I wil, no doubt be using it again in a couple of hours (my 2 am). Like so many that is bewitching hour for me no matter whatever else happens. For today this all started today at lunch time. I had been PF all night and all morning. I was feeling pretty cool about that so I hollered at my son to come down. In a flash we were on our way to the TGIF's here in Kuala Lumpur, one of his favorite places. He is on Summer holidays and I figured as long as I am not traveling we might try to squeeze in some time together. Mom was at her dance classso I clicked on the answering machine and off we went. I should've known better. Had to do a u-turn and head back to the Oxy tanks before we even got there. Ended up stopping at a McDonalds for a cup of ice to hold against my eye and a bag of junk food for him to bring back home with him. OK ... enough whining...time to try to get a couple of winks and shore up for the next knock down drag out. Kinda nice knowing y'all know. P.S. to Jac - I have a great doc friend in S'Pore if you make the trip again and want meds. |
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Title: Re: Intro From A Newbie Post by Ronny on Jul 27th, 2004, 1:18pm Hey, Welcome to the both of you! That list is really hilarious. Many thanks, i needed a good laugh. I'm sorry about your beasts though. PF wishes. Ronny. |
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