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Topic: Does anyone get help in the UK??? (Read 254 times) |
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Tierry_Henry
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Why doesn't anyone help us?
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Does anyone get help in the UK???
« on: Jun 23rd, 2003, 4:50am » |
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Hi to all American 'cousin' sufferers but I'm actually calling any fellow Brits' out there.
I'm a 35yr old sufferer who first registered with this site during my last bout approx Dec2001. (I thought I'd been blessed with a skip year when the clusters failed to turn-up Jan this year after my usual 13 month gap)...I've been suffering for about 8 years now and my bout started a week ago - my wife woke me up on the sofa this morning after a comparitivly luxurious level 6 attack and for the first time the eye-lid on my attack side puffed-up like a balloon. While I conscider myself to be a lucky average, rather than exstream sufferer (usually 4 weeks of attacks at every 1am in the morning) I'm naturally fed-up. This eye-lid thing feaked me a bit and I'm feeling sick in the stomach from the Nytol (Sleep tablets) and Ibuprofen all of wich I dont think do anything at all apart from deal with the shadows.
Anyway, I should get to my point... I was diagnosed by the doctor in my second year of suffering and he just told me to take ibuprofen. A few years ago I asked him if he could give me injections but he said they are available on the NHS but as they are expensive they only give them to airline pilots etc who could endager others with an attack. But, all this talk of Imitrex etc... has anyone in the UK managed to get better treatment either via NHS or private? I'd be interetsed to know if any Brits are able to get better treatment that off-the-shelf ibuprofen.
Many thanks
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cathy
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Re: Does anyone get help in the UK???
« Reply #1 on: Jun 23rd, 2003, 5:06am » |
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Hi to you and welcome, My husband Wes is a sufferer we are in the UK and I find it incredible that you have not been able to get meds if you are diagnosed...go back to the doc with some of the info from this site...ask about O2 and Imigran as it is known here....Wes has been able to get any thing he needs although we did have to fight for the O2!! email me or ring me....I will msg you my numer...good luck.
Wishing you PF times..
Cathy
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Tierry_Henry
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Re: Does anyone get help in the UK???
« Reply #2 on: Jun 23rd, 2003, 6:54am » |
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Many thanks Cathy
I'm going to book an appointment with my GP right now.
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Tierry_Henry
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Re: Does anyone get help in the UK???
« Reply #3 on: Jun 26th, 2003, 8:18am » |
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I went to my doc who gave me 1 packs of 6 Imigran tablets for 1 £6 perscription plus another subscription for 84 (3 a day) 40mg Verapamil tablets which I'm supposed to take after 3 weeks of suffering  but apparently do something to stop the bloodflow spasms and therefore shortern the length of the bout. Well why I cant take it at the beginning I'll never know as neither did my doc, but at least it's a step beyond useless ibuprofen and I'll let you all know on a special string if the Verapamil works.
2 weeks into my bout the evil one gave me a night off last night - so nice to have a full night's sleep (in my bed) and no groggy head or swollen eye-lid in the morning.
I'm gasping for a beer too so look forward to a couple more week's time when I should hopefully be out of this pain hell!
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cathy
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Re: Does anyone get help in the UK???
« Reply #4 on: Jun 26th, 2003, 1:06pm » |
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Hi Tierry_Henry....Great to hear that you have a presciption for Imigran...did you ask about the O2.?? IMHO I would talk to your doctor about that too, took us nearly 3 months to get it sorted so get the ball rolling now...
Wishing you PF times...are you going to the convention in Birmingham..?? check out www.clusterheadaches.org.uk
Cathy
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Tierry_Henry
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Re: Does anyone get help in the UK???
« Reply #5 on: Jun 27th, 2003, 10:19am » |
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Thanks again Cathy... I'll go back about the O2 & look out the convention.
I decided to start the Verapamil yesterday rather than wait because I read other threads which didnt indicate any reason to hold off. Call me stupid if you like and maybe I had my punishment last night as neither that or the Imigran worked at all. I had a number 11 which simply wouldnt shift for 2 hours. I was doing the dance like never before and my rocking turned to a mixture of crazy cursing of demons in my head and my legs going into involanterily shaking. No I'm not mad, just had a bad onebut i thought I was going mad last night and paniced a bit because I worried that the two drugs had an adverse effect.
Oh, well. I'll try sticking with the Verapamil and drop Imigran and try that, then do the reverse if that doesnt work.
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cathy
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Re: Does anyone get help in the UK???
« Reply #6 on: Jun 27th, 2003, 3:28pm » |
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Hi Tierry_Henry
Shit bad news that your still getting hit so bad, I hope this cycle ends for you soon.
Why don't you start a new post on the General Board, introduce yourself there...it gets read and answered to alot more there.
Wishing you PF times.
Cathy 
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jon69
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Re: Does anyone get help in the UK???
« Reply #7 on: Jun 28th, 2003, 2:46am » |
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[quote author=Tierry_Henry A few years ago I asked him if he could give me injections but he said they are available on the NHS but as they are expensive they only give them to airline pilots etc who could endager others with an attack. [/quote]
Your Doc is a complete jerk. The injections will work for you. Demand them!
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ksmiggy
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Re: Does anyone get help in the UK???
« Reply #8 on: Aug 17th, 2003, 6:44am » |
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Hi Tierry_henry
I was diagnosed chronic ( 8 years+ now), saw a specialist at Leicester royal, was immediatly given immigran tabs and injections, i now get the injection as required, although limit myself due to the side effects, found that Kapake(500mg paracetamol, 30 mg codiene) if taken at the onset helps, 1 tab as required, however am rethinking this and looking for new options, in case of addiction etc, push your drs hard, direct them to this site if needs be. if they still will not help change your dr, i had trouble at first, due to costcutting, but eventually you will get there. ditch the ibuproven, it's pretty much useless, (sorry, may not be for you) there are better options, if you prefer cold to hot when suffering, bear in mind that paracetamol helps reduce temp, add a little something else(codiene in my case) and you never know your luck. Hope you get there in the end, as for the immigran, try the tabs first, i have had the injections for about 5-6 years(prob more i lose track) they are losing there edge now, sometimes not enough anymore, the combinations i have taken to ease the pain are frightening (seem ideal at the time though). thus try to keep them as a last reserve.
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| « Last Edit: Aug 17th, 2003, 6:45am by ksmiggy » |
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ksmiggy
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Re: Does anyone get help in the UK???
« Reply #9 on: Aug 17th, 2003, 6:49am » |
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Let me know how you do on the verap, everything they gave me seem to make things worse, found i was better off with abortive than preventative
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daveengland
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i'm not insane,just in PAIN !!!
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Re: Does anyone get help in the UK???
« Reply #10 on: Aug 17th, 2003, 2:31pm » |
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have you tried a GP.mine was prepared to let me try IMIGRAN injections and O2,she felt if they did work then she would be happy to prescribe them.also acupuncture around the stellate ganglion nerve(where the neck meets the shoulder)it felt like a big release of tension in my neck
i haven,t been to a neuro yet due to waiting lists but am MANAGING(?)the HA's a bit better
good luck
dave x
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