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duncan
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For what its worth…
« on: Sep 25th, 2007, 1:23am » |
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I made myself a commitment to post this where it might possibly do some good. It will be a long post, but there is a reason for it.
So, first some background. I have had what I believe are cluster headaches for some 25 plus years. They started when I was in my 20’s (I am now 47), and I get pretty much one attack per year (September/October for some reason). The attack lasts four to eight weeks, median probably 6 weeks with some 4 to 7 attacks per 24 hours. Intense, one sided head pain (always on the right side) as though, the best I can say is as though some one has stuck a knitting needle through my eye ball, with it coming out the back of my neck with a feeling of “pressure”. Sinus and eye socket seem to be ready to explode, and some times I am amazed that my eye does not bleed. Attacks are sudden, with a slightly “weird” feeling just before (a few minutes) - I can tell its coming. The pain builds extremely rapidly (minutes) to a peak and lasts (normally) 20 to 30 minutes, then is gone, suddenly. Blocked sinus on the right. I can lie still (not common I know) and constantly “massage” my scalp. During the attack, I just want to be left alone – something partners have difficulty in understanding.
I have been knocking around with “medication” for years without any success through a variety of doctors, who basically have no clue. Pain killers of all types – no effect. Migraine meds – no effect (Zonmig, caffergot sandomigran, Imigran). Brain scans - nothing abnormal. The only thing that provides some “relief” – or maybe helps me weather it - are HOT compresses. The hottest I can stand. In full cycle I have an electric kettle by the bed, and a supply of towels.
Given that I have lived in Asia for the last 20 years (the migraines started while I was still in UK), there is no real center to get knowledgeable help, so its been fend for myself in that time and its something I had become resigned to living with.
Two weeks ago, the current cycle started. First couple of attacks not so severe, and then an absolute swine of an attack, lasting for hours (which is atypical for me) and sent me back to the computer to surf yet again in the hope of some more info to try something new.
Found the Mayo site and wrote down a few possible treatments. Now the problem is, I live in a smallish town outside of Bangkok, Thailand. So the odds of me getting *any* of the things listed were remote –and indeed of the things I wrote down, the local pharmacy (actually owned and run by a Thai doctor in the evenings) had none of the things I wanted. We “talked” a while (mostly by pointing to entries in MIMS, as my Thai and her English are not up to the task!) and settled on a couple of things she (the doctor) would order for me (Zonmig again, which I know does not work, and sumatriptan tablets – no chance of getting a spray of course). It would take a couple of days to get them.
In the meantime, she suggested I try her “migraine remedy”. Yeah. Well OK. Another night of pain on its way so whats to lose?. So, I got three types of pill, to take one of each, three times a day with food. Who cares what they were.
Well, why I am posting is, they worked. They stopped the attack cold and I have not had a bout for 5 days (with one caveat below!). No pain. Unbelievable. I *know* I should be getting the attacks, I can feel the “warning” “tingle”, but nothing develops. I can feel the sinus congestion, but no pain.
So, back to the pharmacist/doc to find out what the hell was it that she had given me.
When I knew, I was amazed. Well, here you go:
Pill 1: Generic: 1mg ergotamine; 100mg caffeine
Pill 2: Generic paracetamol (for crying out loud!! 500mg)
Pill 3: Generic Orphenadrine citrate with paracetomol (35mgs and 500mgs).
Now, I *know* ergotamine and paracetamol do nothing for me, So, my feeling is it might be the Orphenadrine. I have searched this board and have no hits for this. Trade names : Norflex®, Mephenamin®, Disipal®, Banflex®, Flexon®, Biorphen®, It’s a H1 receptor agonist (the histamine link) and these have been investigated with no clear results. It has several interesting properties, which might give some insights into what is going on. You can get a good description here:
http://en.wikipedia.org/wiki/Orphenadrine
Whether it is that, or whether it’s the combination – I really have no idea. I do know that after taking the pills, the attacks just stopped. Never in 20 plus years have I been able to get a single instance of relief. As I sit typing this, I *know* I should be having an attack, but its been blocked.
I make no other observation here, than this worked for ME. If even one other person gets relief from this, then I am more than content. All I can do is tell you what finally has put an end to 20+ years of debilitating headaches for me.
One last point, if it does work for you – don’t drink (alcohol) !!! Made that mistake last night and paid for it big time….will not do that again in a hurry.
duncan
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Thanks for sharing Duncan. So glad you finally found some relief ! That's super ! I hope it last forever !
Norflex is a drug given IV to many headache patients at the Diamond Headache Clinic in Chicago. It's given as a 'pain medication'. It is described by them as a 'muscle relaxer'. I've had it many times and it did absolutely nothing for my CH attacks. It neither aborted an attack or prevented an attack.
Ergotamine is a powerful vasocontrictor (as you probably already know) and is given to many CH sufferers from time to time. Be sure to heed the limits to this med.
If I were a gambling man, I'd bet that it wasn't the Norflex that was helping ... it was the Ergotamine. But either way, I'm glad that something is helping.
Be sure not to mix the Zomig with the Ergotamine. It may cause a 'cardicac event'.
Pain free wishes
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: For what its worth…
« Reply #2 on: Sep 25th, 2007, 4:05am » |
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Duncan,
I'm glad that you've found pills which work. 
Just out of curiosity, do you use caffeine otherwise? You know, coffee, tea, coca-cola?
Because on my experience that pill 1 alone could help, because caffeine does help with clusters. My ch treatment relies these days on products with caffeine alone; energy drinks and caffeine tablets.
And I have noticed that anadin extra tablets (which have paracetamol, caffeine and one other) can help with milder hits, shadows.
Different things work with different clusterheads. This is just one thing to think about. The important thing is that the treatment worked!
PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Ctech
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Re: For what its worth…
« Reply #3 on: Sep 25th, 2007, 12:57pm » |
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Well there goes my hope for an ancient remedy  I have always thought that maybe somewhere like Thailand there may be a 3000 year old cure that us modern cluster heads don’t know about.
When I first started reading this post I was sure that I was going to here about some magic bamboo root with CH healing powers 
For what its worth, I'm glad you found something that works
-Chris
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