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mardiganseraph
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Nothin Workin.......
« on: Nov 30th, 2006, 9:04am » |
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I was diagnosed earlier this year with clusters. At first all the doctors had been saying, "Oh, you'll be fine. It's only a headache." Now, they aren't so sure about it. They have tried almost everything that a military doc can get a hold of and then some from outside sources. Oxygen treatments didnt do anything, matter of fact, the one time that they tried it i went off of kips scale for pain. Please does anyone have info or advice for me? I am too young for this demon, plus i have a profession to where if they cant get it under control, i will be put out of my job and be looking for a place that can deal with these things.
Sincerely,
Marcus
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chopmyheadoff
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Re: Nothin Workin.......
« Reply #1 on: Nov 30th, 2006, 9:08am » |
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hi marcus, glad to meet you - sorry its under these circumstances . . .
can you tell us , what medications have you tried ??
have you tried any of the triptans as an abortive . oxygen doesnt work for some people so dont be disheartened . .
we'll get you sorted
chops
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Redd
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Re: Nothin Workin.......
« Reply #2 on: Nov 30th, 2006, 9:13am » |
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Oxygen also has to be administered correctly, which for effective relief is 12-15 lpm with a non-rebreather mask.
If you are not taking verapamil at this time, try to chug a Red Bull at the very first sign of the beast coming on.
Please do let us know what you ahve tried and what doses, so we can help steer you in the right direction.
We aren't doctors but we ARE expert patients.
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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chopmyheadoff
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Re: Nothin Workin.......
« Reply #3 on: Nov 30th, 2006, 9:19am » |
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on Nov 30th, 2006, 9:13am, Redd715 wrote:
If you are not taking verapamil at this time. |
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i am taking verapamil, lots of it.
I also skull about 4 cans of redbull a day .
is there somthing i should be aware of coz im fine 
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Redd
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Re: Nothin Workin.......
« Reply #4 on: Nov 30th, 2006, 9:22am » |
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"For some people"....the verapamil/taurine combination has shown adverse side effects. I'm not well versed on what exactly they are, but someone will be along to explain better than I could.
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chopmyheadoff
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Re: Nothin Workin.......
« Reply #5 on: Nov 30th, 2006, 9:28am » |
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<---- looks around waiting with his finger poised on the
ringpull of another redbull
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Shedz
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Re: Nothin Workin.......
« Reply #6 on: Nov 30th, 2006, 9:33am » |
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Can this be any worse than some of the other treatments the Docs try out on us???
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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mardiganseraph
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Re: Nothin Workin.......
« Reply #7 on: Nov 30th, 2006, 9:37am » |
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Thanks,
I have trip some of the triptans but not all, I am on my way to the store for some red bull and will try that. I go to neurology tomorrow. Any other suggestions?
Marcus
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chopmyheadoff
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Re: Nothin Workin.......
« Reply #8 on: Nov 30th, 2006, 10:13am » |
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all i can tell you is what has worked for me - and i put up withy these suckers for 7 years without anything.
i now take verapamil daily - this stops most attacks.
for the ones that get through i have imitrex self injector kit. this is what you should be asking to try. it kills any ch i get in a matter of minutes, sometimes seconds.
let us know how you get on mate.
for the redbull to work you have to down it very quickly as soon as you feel the first twinge.
good luck
chop
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chopmyheadoff
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Re: Nothin Workin.......
« Reply #9 on: Nov 30th, 2006, 10:15am » |
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oh and dont let him fob you off with any triptans in tablet form, they take too long to work and are useless for ch.
you want the injector kit. or nasal sprays at very least. the sprays take about 15 mins to work.
chopper
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nani
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Re: Nothin Workin.......
« Reply #10 on: Nov 30th, 2006, 10:26am » |
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on Nov 30th, 2006, 9:28am, chopmyheadoff wrote:<---- looks around waiting with his finger poised on the
ringpull of another redbull |
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Choppy...from Floridians book:
CAUTIONS
Taurine should not be taken if you are currently on a prescription for Verapamil or any other calcium channel blocker. Until more is learned, it is wise to assume that Taurine may increase the action of Verapamil, which could slow the heart excessively, causing irregular heart beats and possibly a heart attack. It is also not clear if Taurine would interact with other medicines like Sodium Valproate or Lithium.
It would be wise to be very careful if you want to continue using Red Bull as an abortive. Especially if your blood pressure is low.
Marcus, welcome and sorry you're here. Here's a resource to bring to the neuro regarding CH meds.
Good luck and pain free wishes, nani
http://www.ouch-us.org/medications/medications.htm
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Linda_Howell
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Re: Nothin Workin.......
« Reply #11 on: Nov 30th, 2006, 11:09am » |
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Quote:| Oxygen treatments didnt do anything, matter of fact, the one time that they tried it i went off of kips scale for pain. |
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I have never heard that 02 would make one go "OFF" the KIP scale. For a few, it doesn't work...but never heard that it made CH worse.
Like Redd said, it has to be admisinistered properly. Hope you give it another try with a non-rebreather mask and regulator set to 15 lpm.
Linda
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mardiganseraph
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Re: Nothin Workin.......
« Reply #12 on: Nov 30th, 2006, 11:28am » |
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I'm not so hot on the taste of Red Bull. Do you think that a monster would work instead? I lived on those while deployed to Japan last year and don't recall my fall cycle lasting more than 2 or 3 weeks apposed to the usual 6 to 10 weeks I was accustomed to.
Marcus
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vietvet2tours
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Re: Nothin Workin.......
« Reply #13 on: Nov 30th, 2006, 11:44am » |
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on Nov 30th, 2006, 11:09am, Linda_Howell wrote:
I have never heard that 02 would make one go "OFF" the KIP scale. For a few, it doesn't work...but never heard that it made CH worse.
Like Redd said, it has to be admisinistered properly. Hope you give it another try with a non-rebreather mask and regulator set to 15 lpm.
Linda |
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What she said yep.
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Redd
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Re: Nothin Workin.......
« Reply #14 on: Nov 30th, 2006, 12:02pm » |
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on Nov 30th, 2006, 11:28am, mardiganseraph wrote:I'm not so hot on the taste of Red Bull. Do you think that a monster would work instead? I lived on those while deployed to Japan last year and don't recall my fall cycle lasting more than 2 or 3 weeks apposed to the usual 6 to 10 weeks I was accustomed to.
Marcus |
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Not sure if the caffine and taurine content of monster is the same. It's the combination of the two that appears to do the trick. I can't stand the taste of Red Bull either, howe ver...I hate the beast worse. Hell I'd chew dried cow patty if I knew it had the chance of working.
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mardiganseraph
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Re: Nothin Workin.......
« Reply #15 on: Nov 30th, 2006, 12:12pm » |
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Thanks REDD,
Thats a hoot on the cow patti thing. I agree with that one. I will give the monster thing a shot first and let you know of the results.
Marcus
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FramCire
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Re: Nothin Workin.......
« Reply #16 on: Dec 2nd, 2006, 12:39am » |
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I use Zyprexa as an abortive (I use 5 mg at onset) and it works great for me.
I would try O2 (administered correctly), imitrex injects, imitrex/Zomig nasal, and cafergot before Zyprexa, but that is just my opinion.
I have tried them all at one point or another with mixed results. Find the one that works for you but don't mix any of this stuff while finding it.
Good luck.
Eric
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E-Double
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Re: Nothin Workin.......
« Reply #17 on: Dec 2nd, 2006, 4:38am » |
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Hiya
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05 now just awaken from a 6 month old haha).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again but then I might not wake up for the baby and wife will give me a real headache  )
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
Eric ( a different one) 
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tanner
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Re: Nothin Workin.......
« Reply #18 on: Dec 2nd, 2006, 5:09am » |
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Good to see you up and about E
Wish I could help ya with the baby thing, man it's been along time since I have known the feeling of rocking and cuddling one back to sleep.
Am I the only one around here that likes redbull?
Marcus, bump this thread if you need to I think a lot of the wise one's may have some input although you have already heard from some of the best  don't include me in that I am just here for the ride and to say hi.
the only thing I am becoming an expert at is attitude. I have let mine slip lately and it sure does not make things better!
Good luck, and I will see ya around the playing field......Tim
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johnd7
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Re: Nothin Workin.......
« Reply #19 on: Dec 3rd, 2006, 1:16am » |
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on Nov 30th, 2006, 11:09am, Linda_Howell wrote:
I have never heard that 02 would make one go "OFF" the KIP scale. For a few, it doesn't work...but never heard that it made CH worse.
Like Redd said, it has to be admisinistered properly. Hope you give it another try with a non-rebreather mask and regulator set to 15 lpm.
Linda |
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It does need to be adminstered correctly for BEST results but I have had it work plenty of times with a regular mask. I have also had it cause them to worsen. I have had nothing but great success though with the clustermasx found at www.clustermasx.com...this is no gimmick. Spend the $25 for this, it is money well spent.
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Brew
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Re: Nothin Workin.......
« Reply #20 on: Dec 3rd, 2006, 9:13am » |
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on Nov 30th, 2006, 12:02pm, Redd715 wrote:Hell I'd chew dried cow patty if I knew it had the chance of working.
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You must have had my homemade pizza somewhere along the way.... 
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Redd
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Re: Nothin Workin.......
« Reply #21 on: Dec 3rd, 2006, 9:49am » |
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on Dec 3rd, 2006, 9:13am, brewcrew wrote:
You must have had my homemade pizza somewhere along the way.... |
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Is it any good at aborting CH?
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Re: Nothin Workin.......
« Reply #22 on: Dec 3rd, 2006, 9:59am » |
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on Dec 3rd, 2006, 9:49am, Redd715 wrote:
Is it any good at aborting CH? |
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Unfortunately, no. Only unplanned trips to the restroom and the dentist.
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Redd
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Re: Nothin Workin.......
« Reply #23 on: Dec 3rd, 2006, 10:03am » |
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on Dec 3rd, 2006, 9:59am, brewcrew wrote:
Unfortunately, no. Only unplanned trips to the restroom and the dentist. |
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Then I'm afraid I'll have to pass...but thanks for the offer... 
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mardiganseraph
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Re: Nothin Workin.......
« Reply #24 on: Dec 7th, 2006, 3:14pm » |
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well i got some good news and some bad news..... they sent me to neurology to attempt to get a hold on my demons..... the doc seems confident and knows what appears to know what we are all dealing with, gave me a bunch of samples and told me to try them one at a time for each attack. so things should start looking up. thats the good part.... now heres the bad..... in the samples was relpax- it worked on the first headache... actually aborted it about 25 minutes after i took the pill, but hasnt worked a bit since so back to the drawing board right? but heres the kicker, before he can finish treatment ideas, i am being sent to a foreign country to meet my new command and in the middle of cluster cycleand without any meds to ease my insanity. pray that this cycle ends soon for me. i leave some time next week for guam.
Marcus
PS the Monster energy drink in the green lettered can contains double the taurine and caffiene as red bull. so there is no more dealing with the evil taste of red bull. just a thought. Love yall
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