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Topic: I don't know how to start this thread (Read 366 times) |
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PollyPocket
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I don't know how to start this thread
« on: Aug 27th, 2006, 9:10pm » |
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ok, here's the deal. My daughter, Hannah, went to work and told her boss that she needed to get a Red Bull. Her boss said she didn't need any because she (hannah) hadn't slept much and didn't need the jolt. Han told her boss, Mimi, that it wasn't for her, it was for me and went on to tell her that I suffer from CH. Mimi immediately identified with it and said she "used to have those" and of course, Han being my daughter, immediately thought "yeah RIGHT! you don't 'used' to have those' and pooh-poohed her resonse.
Well, as it turns out, Mimi went on to describe in exact detail what clusters are, what they feel like, how she told her doc that if she didn't get some relief that she would put her head under a train. She went on to say that your mom must feel like the lonliest woman in the world cuz noone knows what that feels like unless you've experienced it.
So here's the kicker: Mimi said she went to a Dr. John Harbison out of the Medical College of VA (MCV) and prescribed a drug called Omytriptilin. Mimi was misdiagnosed for several years, suffered for 7 years, and then this doc said that CH is due to an allergy. For each sufferer it is a different trigger. He prescribed the above med, and she has been in remission for 26 years.
Now I took it as one of the triptans and it works ok for an abortive, but TWENTY-SIX years????
Anyone heard of this stuff?
I have to tell you, I have never told this woman about my CH, never had any discussion at all about my health or ch at all, yet she discribed it so completely to Hannah that Han knew she wasn't BS'ing. What do we think folks?
Hoping hoping hoping Jen
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nani
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Re: I don't know how to start this thread
« Reply #1 on: Aug 27th, 2006, 9:38pm » |
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When I googled it I got nothing... Maybe it's amitryptaline? Some people have good luck with it. Not me, though. 
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PollyPocket
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Re: I don't know how to start this thread
« Reply #2 on: Aug 27th, 2006, 10:27pm » |
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that could be what she wrote on the piece of paper she gave Han. Looks like it could be. What did it do or not do for you Nani?
This woman, my daugther's boss, took it as prescribed for however long it was, then nothing since. I've never heard of it before and will look it up. From what Han tells me, Mimi had allergies to mold and pine pollen and identified those as triggers. Moved out of the mold infested home and then nothing since. Its just freakin me out that she knew what ch is and went thru it for so long, then nothing since.
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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Bond007
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Re: I don't know how to start this thread
« Reply #3 on: Aug 28th, 2006, 4:44pm » |
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Amitriptyline is the generic name for Elavil. The drug has 3 uses: Antidepression, Nerve pain blocker & as a drug synergist. I have been prescribed this drug for all 3 reasons over the years and I'm currently taking it for my CH as a synergist. Basically, my neuro doesn't want to increase my Topamax any more than 200 mg a day, so we've added 75 mg of Elavil (amytriptyline) to "super charge" the effects of the Topamax without actually increasing the Topamax itself. Also, since it has the properties to block nerve pain (to an extent) and help with depression, I'm getting a bonus.
I don't know that it can help with CH all on it's own. It's nerve blocking properties aren't all that spectacular, but they have helped to reduce the intensity of most of my CH hits. I will still get a Kip 10 at least 1-2 times a week. Then, again, it could react differently for someone else.
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PollyPocket
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Re: I don't know how to start this thread
« Reply #4 on: Aug 28th, 2006, 7:35pm » |
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Well, y'all know me and meds- whatever weird side effect it can have will be visited 10fold to me. Do you think its worth looking into? As I said, I'd never heard of this before now.
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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Bond007
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Re: I don't know how to start this thread
« Reply #5 on: Aug 29th, 2006, 2:53pm » |
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Well, it definitely can't hurt, besides the drug is fairly cheap since there's no longer a patent on Elavil as its available in its generic form of amitryptaline. If you're willing, I'd say give it a try. What have you got to lose except perhaps the $10 co-pay for a month's supply -- at least that's what my co-pay was for 75mg tablets once daily.
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BMoneeTheMoneeMan
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Re: I don't know how to start this thread
« Reply #6 on: Aug 29th, 2006, 5:02pm » |
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Forgive me for being a skeptic, but it seems weird that she has been in a 26 year remission from CH.
Im not saying I dont believe it, but I mean to suffer for 7 years and then go for 26 pain free years seems unbelievabe.
Some docs say that we "grow out of it", but i have never heard of it actually happening.
Talk to your doc about that drug, see what he/she says.
PF wishes
B$
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The mad viking
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Re: I don't know how to start this thread
« Reply #7 on: Aug 29th, 2006, 5:05pm » |
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Dont know about that long remission but we have 1 here in Norway that gets cluster for a periode of 1 mnth every 7 years and always in the fall.
Svenn
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Jonny
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Re: I don't know how to start this thread
« Reply #8 on: Aug 29th, 2006, 6:49pm » |
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I can see going 26 years and then they went away, but not the other way around.
Im with Opie on this one
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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