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Topic: Will this ever end?? (Read 246 times) |
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ackogan
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Will this ever end??
« on: Aug 25th, 2006, 11:43am » |
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 [flash=200,200]Hello all, I am fairly new to this site. Just not to CHA's. I have been getting them since I was in my early 20's. Of course I was drinking a lot more then....I've been a teetotaler for over 6 years now.
Here's my newest delima...I have been in this cluster for the longest amount of time I can remember...at day 30 now...I think there have been about two or three scattered days that I was pain free. There is a constant "numbness" in my right temple every day. It used to be that I would know that was a sign one was coming. It also used to be that I could set my watch to when they hit. Now it is scattered....5 pm, 2 am, 2 pm, 4 am.....sometimes multiple times in a day....maybe I can thank the changes to getting older...
I have tried sooo many things.....ice packs, heating pad, hot showers, excedrine, tylenol, naproxin, maxalt, some kind of benzo, that "head-on" stuff, and some generic OTC Migraine stuff you put under your tongue, and others. Yeah the maxalt worked (the XLT was better than the pill form though). I only have two maxalt left and am guarding them for dear life until I have another 8 or 9 attack. I am not working at this time and don't have insurance. So I cannot afford any more. Yeah, I know if it works any price is cheap...but have bills....
Any input would be wonderful.....[/flash]
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Garys_Girl
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Re: Will this ever end??
« Reply #1 on: Aug 25th, 2006, 3:09pm » |
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Hubby's had CH problems, as it turns out, since 1997. We didn't know what they were until this year when they were clustered in such a way that we could figure it out.
Unfortunately for him, that meant 6 - 10 attacks a day, average attack a K8 for an hour. We found this site, and Kudzu helped take that down to K6/K7 average for 20 - 40 minutes, though life for him was still peppered with the K8 - K10 attacks, sometimes up to 3 hours (K10 portion, thankfully, never longer than an hour). He was never pain free - still isn't. Constant shadows of varying intensity, definite ghost attacks now (drooping eye, sinus flareup, etc.), and a frequent "numbness" on the affected side of his face.
For hubby, the most effective abortives were Oxygen and caffeine. He was up to 22 espressos a day at the end. Using an energy drink such as Red Bull may ease the physical side effects of using such large amounts of caffeine, though if you've got a sensitive system (esp. colon), the caffeine itself is the problem, not the method of delivery.
His CH activity began to slow about three weeks ago. He still has constant shadows, ghost attacks and the numbness at times, with an attack about weekly. So this cycle was full-on for four months. And from what I've gleaned from this site, that's not too unusual. I'm sure you don't feel "lucky" that your episodes are usually shorter than 30 days - and I'm sorry this one is different.
However, in the list of things you've used to deal with the CH, I didn't see oxygen. Oxygen is the first, best most effective method of aborting the CH attacks. It must be delivered at a high flow rate (about 12 lpm - requires a different regulator than usually provided with O2 scrips), and you must use a non-rebreather mask for up to 20 mintues. Click on the tab to the left of this message window that says "oxygen info".
You can also read about Kudzu, melatonin and Taurine in the medications section of the board. Many people also supplement whatever they're doing with magnesium and calcium.
Red Bull appears to be the caffeine abortive of choice.
Detoxing/fasting is working for some.
And for those who have tried everything or are sick of western medicine treatments that provide more side-effects than relief, there is the "clusterbuster" alternative. Psychedlics seem to act on the mechanism in the hypothalamus that is supposed to be the problem that causes CH. Harvard recently published a study in Neurology that indicates that LSD/psilocybin mushrooms work to abort CH cycles in 82% of the people that participated in the study. Yes - that said abort the cycle, not the individual CH attack. There's more info on this at www.clusterbusters.com
There's a lot of useful info on this site, and plenty of people to help answer questions.
Good luck and happy hunting!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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kevinpix
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Re: Will this ever end??
« Reply #2 on: Aug 25th, 2006, 6:36pm » |
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There are a bunch of treatments available, how about trying 02? The refills cost about 15 dollars. I wish you lived near, I'd give you mine. Look on ebay, maybe can find a good deal. I was chronic for 4.5 yrs, couldn't handle it anymore and got TN surgery. We all try and try again,and I still get hits. Try red bull and ice packs on your head and face for now! You'll be in my prayers! Hope you have some good painfree time to come!!
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paulc
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Re: Will this ever end??
« Reply #3 on: Aug 26th, 2006, 2:24am » |
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I'm glad that your husband has found some relief, Laurie. I have a question: I've heard of "shadows" but never "ghost" attacks? Are they the same thing, just with a different name?
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Paul C
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E-Double
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Re: Will this ever end??
« Reply #4 on: Aug 26th, 2006, 3:10am » |
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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).....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 hahahaha!)
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
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
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Gonna take a breath and try again.
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BarbaraD
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Re: Will this ever end??
« Reply #5 on: Aug 26th, 2006, 7:39am » |
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I'm all for the melatonin. But it takes a while to get in your system. don't give up after one or two nights. Ive ben taking it for a couple of years now and sleep thru the night until about 4 a.m. I then wake up with a shadow and hit the Red Bull or coffee pot. If the shadow doesn't go away, it's O2 and I can usually abort this way. Sometimes a 10 creeps in, but not like they were doing.
Hugs BD
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Garys_Girl
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Re: Will this ever end??
« Reply #6 on: Aug 26th, 2006, 11:00am » |
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Paul -
Thanks for the good wishes for Gary. I think (hope) he's just coming out of cycle. Like ackogan said - we constantly wonder - will this ever end? But at least it's mostly just shadows now.
A "ghost" hit is when you think you're about to get hit - you have all the symptoms - the droopy eye, the side of his face buzzing/numbing, the back of his head getting sensitive, the painful sinus flare-up - and then nothing but discomfort. No attack.
While he'll take a ghost hit over an actual attack at any time, it can really mess with your head.
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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