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Title: CH club member for 6 years... Post by Marek on May 4th, 2006, 1:07pm Hi guys, My name's Marek, I'm 25 and for 6 years a member of our peculiar club, where no member wants this privilege. The headaches started when I was 20 and of course at first nobody knew what was happening to me. The worst thing was that I didn't know what to do, how to act. So I lay down (didn't even think that standing up could help) for many hours dying every single second, begging for a stupor to come, but it obviously never did. The EEG didn't show much, so I went to a hospital for a tomography. To be frank, I seriously considered a tumor to be the cause of the headaches - what else could it be? Anyway, I had to stay at the hospital for a few days before the X-ray and obviously had a few attacks during that time - which was paradoxically quite fortunate. When the doctor saw my dripping eye and nose and the paralyzed cheek and jaw, she just nodded and immediately put me on oxygen. The relief was immediate. The tomography didn't show anything and I was sent home with a CH epicrisis. I started to browse the net in search for some information about the devil. I've read a few descriptions of the symptoms and some general ideas, like sitting or staying on your feet instead of lying, but nothing else. Then I came to this site. When I started to read the guestbook I couldn't resist crying. The tears just kept coming, because I realized so many people suffered so greatly and I knew how horribly it felt. I'm episodic (thank god) and the remissions are quite long. Usually (at least for the last three years) I get hit around April, which means I'm currently in cycle, with a few other, random cycles or hits a year. As for my particular CH 'brand' idiosyncrasies - I always get hit during a day, never at night, so at least I can get a bit of sleep; my senses become very sensitive, so I avoid light and sounds; and I don't 'dance'. And I'm probably allergic to Imigran, because I had problems with breathing after taking just one pill of it. I don't know what would happen after injection. Other than that, I got everything of the standard CH package, you know the drill :) I've learned about two wonderful gadgets from You, guys - a non-rebreathing mask and kudzu. The mask has shown me how the O2 could really be effective. The cannulae gave enough oxygen for me to get a relief, but couldn't even compare to the mask. I'll have to try the Clustermasx someday, I'm sure it's still another step forward. The kudzu works for me just like for most of you - the hits are milder and shorter and the 'schedule' changes. I feel more dizzy after hit w/ kudzu than w/o it, but it's nothing serious. I've noticed though that you shouldn't take it between the cycles, because the beast tends to get used to it and doesn't react so well to it. I've also started to use kudzu as an abortive rather than preventive with some small results. I also use reflexive foot massage. Please check another post on the treatments forum. Hopefully it'll work for someone else. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1146761965 Recently I've seen an advertisement of a high oxygen concentration water (1000 times more than normal water). Has anybody tried it as abortive? I'd check it out, but it's quite expensive and I don't know if it's worth it. It would be great though, as it's much more portable than heavy oxygen tanks. regards Marek |
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Title: Re: CH club member for 6 years... Post by Redd715 on May 4th, 2006, 1:35pm I found this.... Not sure if it would do anything but empty your wallet. http://www.thefactsaboutfitness.com/news/bottled-water.htm |
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Title: Re: CH club member for 6 years... Post by seasonalboomer on May 4th, 2006, 1:53pm on 05/04/06 at 13:07:47, Marek wrote:
You sound as though you've got it pretty "together" on the whole CH thing. As for the "oxygen concentration water" there was someone that stopped in several weeks ago hawking "Cellfood" which promises a powerful oxygen punch with a few drops in your own purified water or food. I had just been to the local health food store and been pitched the stuff there as well. Save your money, this stuff is all pretty scammy. Do a Google on "Oxygenated Water" and you'll want to use a sanitizer on your keyboard after you've done it - hucksters. Scott |
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Title: Re: CH club member for 6 years... Post by Marek on May 4th, 2006, 2:12pm Sorry to hear that :( I just happened to get hit when I was sending the post above, so I got into a car, drove home, took O2, drove back. This water thing would be great for such occasions, if only it worked :( |
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Title: Re: CH club member for 6 years... Post by seasonalboomer on May 4th, 2006, 2:19pm they make little tanks you could keep in the trunk as a backup for those occasions. |
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Title: Re: CH club member for 6 years... Post by Marek on May 4th, 2006, 2:40pm That's some solution. I've also heard about really small tanks especially made for allergic people with asthma, but have no other data on the subject (1 litre? plastic?) Have you heard about them? |
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Title: Re: CH club member for 6 years... Post by Kirk on May 7th, 2006, 5:28am I use an H tank which is huge at home and I have 7 E tanks that I take with me. The E tanks are 24 Cu. Ft. and good for about two attacks for me. |
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