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Rockcoat
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Back in Hell after long remission
« on: Apr 1st, 2007, 2:02am » |
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Glad I found this site. At least there are others who understand how bad this affliction sucks. I have just started a new cluster about 10 days ago and I'm up to 3-4 attacks per day. One guaranteed attack about 90 minutes after falling asleep. I have been very lucky as I am episodic and have been in remission for many years but now I'm back in HELL and I'm really depressed about it. The things that worked last time do not seem to be helping this time.(Percocets,Imitrex etc.) On the bright side, I just read on Wikipedia that mushrooms or LSD have been known to stop attacks (too bad I'm years past that foolishness) although it may be tempting. I could not imagine being in the middle of a trip and getting a CH, something tells me that would be really bad. Well anyway here I am and this is my first post, I'd like to get to know some of you. If you have any tricks let me know. I'll be surfing this site extensively.
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ClusterChuck
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Re: Back in Hell after long remission
« Reply #1 on: Apr 1st, 2007, 3:57am » |
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I am sorry to have to welcome you, but if you got clusters, this is definately the place to be!! Welcome!
You mentioned being beyond the stage of "getting high" with the shrooms and LSD, fear not! Most take an amount that does NOT get you high. If you are interested in finding out about more, then go to an excellent site www.clusterbusters.com, that is run by a fellow clusterhead. It is a site that is devoted to the "alternative" methods available. It is a VERY informative site.
You did not mention oxygen. It is the safest, cheapest, and most effective abortive available to us. It MUST be used properly, though, in order to work. The tab on the left side of your screen "oxygen info" has all the information you need to get started.
Good luck, and ask any questions on what is new and exciting.
Chuck
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Thomas Fuller
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: Back in Hell after long remission
« Reply #2 on: Apr 1st, 2007, 4:22am » |
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hi rockcoat.
On the bright side, I just read on Wikipedia that mushrooms or LSD have been known to stop attacks (too bad I'm years past that foolishness) although it may be tempting. I could not imagine being in the middle of a trip and getting a CH, something tells me that would be really bad. Well anyway here I am and this is my first post,
i feel exactly like you about this.
but on friday teatime, i was getting hit every one and a haf hours.
so at 11pm tried shroom (ho my god what have i done)
had 2 hits while high.....but for some reason, they did not touch m,y eyeball  so i just melted them with oxygen.
felt fine 4 hours later....BUT.
right up till saturday nite 11pm, i have had about 15 kip 9s.(WTF)
fell asleep at about midnight (YIPPEE) and i have only just woke up, without one hit all nite (thank you lord)
but you have to be off all other medication.
i will keep you posted how i feel for the next few days
as i have been told it takes 4 days to notice any difference.
good luck rock.....dont worry they will soon pass.
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Rockcoat
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Re: Back in Hell after long remission
« Reply #3 on: Apr 1st, 2007, 6:38am » |
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Thanks for the welcome guys. About oxygen...I have tried it in the past with little or varied success. (My mother required o2 towards the end of her life) I have not done everything recommended in the o2 section however such as I used the nostril tubes not a mask but thats about it,does that make that big of a difference? I'm just now about 2 weeks into a cluster,I have had mini clusters stop in 2 - 3 weeks before so I haven't run right out and gotten the gear for o2 therapy. I guess now that Mom's gone I should get my own rig to have on hand. Any advice on
which mask to buy? There are a few choices on the link.
Yorky,I'll reply to you later but I gotta go the beast is starting to scratch inside my temple, sh*t I can feel my eye starting to burn....
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BarbaraD
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Hugs to ya
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Re: Back in Hell after long remission
« Reply #4 on: Apr 1st, 2007, 8:35am » |
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Yes, the mask makes a difference.... A non-rebreather mask or a Clustermask is essential. The nosey thing is useless. And the O2 needs to be at 15 liters per minute to work.
You might try melatonin at night before bedtime (9-12 mg) to get thru the REM sleep (about 90 minutes after falling asleep). It takes a couple of weeks to get into your system.
Red Bull at the first sign of CH helps me and sometimes aborts and attack.
Read up on what's happened since your last cycle....
Hugs BD
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pieface_49
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Re: Back in Hell after long remission
« Reply #5 on: Apr 1st, 2007, 8:36am » |
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Welcome Rockcoat. I am a newbie who has found this board to be a blessing. After four years of misdiagnoses, it took 2 minutes to read the testimonials on the opening page and realize these people were telling my story. There is a lot of wisdom and knowledge to be had. Many will say there is only one non-rebreather mask that works properly. I am sure someone will post the link to the site where you can purchase it. Rockcoat, I could not find the link. I am sure someone will post the link for the suggested non-rebreather. Hope your cycle is short and fleeting.
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Guiseppi
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Re: Back in Hell after long remission
« Reply #6 on: Apr 1st, 2007, 12:41pm » |
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The mask does more then make a difference. If I used the nose tubes, I'd have a 90 minute headache with no relief. If I breathe pure oxygen it aborts the headache in less then 8 minutes. Get either a non re breather or a "cluster mask", start it at the first sign of a headache at a high flow, up to 15 lpm.
You need a preventative of some sort when your on cycle. I use lithium at 1200 mg a day, other use verapamil, topomax, there are several you need to read up on. The prevent you take when your cycle starts to reduce the severity and the frequency of the attacks.
Aborts: You mentioned percocet, most shy away from narcotic pain killers because they take too long to hit your system and really don't touch the pain. You also mentioned imitrex, I use the injectables as a last resort, they always work for me. The pills and nasal sprays did not work for me. You might also try energy drinks such as monster as an abortive. Many are having success slammming one or two of those at the first sign of an attack.
You have much reading to do, you'll find very few docs know diddly about this thing or how to treat it so the load fall sback on you to educate yourself and then your doc. Welcome aboard there are thousands of beautiful people here to lean on who actually know what you're going through!
Guiseppi
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ClusterChuck
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Re: Back in Hell after long remission
« Reply #7 on: Apr 1st, 2007, 12:51pm » |
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For $25.00 USD, you can get the best mask in the world for us clusterheads. It is worth EVERY penny!
www.clustermasx.com
You can also get a non-rebreather mask at any medical supply house, for less than $10.00, but the clustermasxTM is worth its weight in gold.
Good luck
Chuck
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"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
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Rockcoat
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Re: Back in Hell after long remission
« Reply #8 on: Apr 2nd, 2007, 8:32pm » |
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Chuck, Thanks I ordered the mask last night. I have an appointment on Wed. to get a tank.
"Welcome aboard there are thousands of beautiful people here to lean on who actually know what you're going through!"(Guiseppi, you are one of them thanks for taking time to write)
Thank you all.
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Linda_Howell
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Re: Back in Hell after long remission
« Reply #9 on: Apr 2nd, 2007, 9:27pm » |
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Quote:
Drop this from your arsenal right now. Narcotics DO NOT WORK and.....lead you to rebounds from hell, addiction.
02, energy drinks, cold packs...?
http://www.ouch-us.org/familysvs/familysvs1.shtml
If you ever need more one-on-one help and info or just a friendly ear to listen. O.K. ?
Linda Howell , chair of Family Services.
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| « Last Edit: Apr 2nd, 2007, 9:29pm by Linda_Howell » |
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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