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Topic: New Sufferer (Read 575 times) |
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Trell
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New Sufferer
« on: Jul 27th, 2004, 2:05pm » |
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Hi
Just a quick intro - my name's Mike, I'm 31, live in the UK, and I started getting cluster headaches about 2 weeks ago.
I've suffered episodic migraines ever since I was 7, and these have always been infrequent and tolerable. These 'Cluster headaches' are agonizing.
It starts off with a low throb just behind my right eye, and in minutes, has renered me useless, streaming eyes, runny nose, and a pain so severe that I feel like clubbing myself just to knock myself out.
I've never really had to visit a GP for six years, only for the odd check-up. Now, I realise why I haven't bothered with GPs.
The first GP I saw prescribed me Imigran (sumatriptan) injections, and these seem to be able to banish the headaches. He also prescribed me a prophylactic Sanomigran (pizotifen). I don't know if these are working, but I still wake up in great pain.
The problem with the Imigran is that the doctor only prescribed me two doses.
I've since seen another two GPs to try to obtain more Imigran and to get advice on what I could be doing. However, they seem loath to prescribe me more Imigran. One has instead put me on a 10mg Amitriptyline course, with Bedranol, and (amazingly enough) Diazepam. He advised me that he wanted to 'experiment' with me to find the right preventative medicine, and told me to see him again in three weeks.
These drugs don't work for me. I'm still getting the same excruciating agony, the attacks are still happening, I'm almost in tears through frustration as well as pain, and nobody seems to want to actually stop it. I feel more like a guinea pig than a human.
I understand that these cycles last for up to six weeks. I don't know how I'm going to cope with this.
What can I do to convince doctors that I don't want trial-and-error? I want my life back. Should I just opt for seeing a neurologist? Why doesn't any GP want to prescribe me a drug that works?
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Ronny
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Re: New Sufferer
« Reply #1 on: Jul 27th, 2004, 2:48pm » |
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Hi there,
Sorry you have to be here.
it can take one or two weeks before the preventatives start working, or ...
Maybe they are not the right preventatives, that may be the reason why that doc wants to experiment.
Anyway, you got your diagnose real fast, after two weeks, woow. It took me almost seven years.
Just stick around, read a lot and you'll learn a lot.
I know i did.
PF wishes
Ronny.
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floridian
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Diazepam is great for anxiety (especially if you discount the fact that it can cause memory loss, impair coordination, and is habit forming). Never heard about it being useful for clusters.
A prednisone taper is a quick and effective way to turn off the pain for a short time period. They are commonly used to allow preventives to take effect. By limiting the length of steroids to a week or three, and tapering the dose off gradually, most of the side effects are avoided.
Someone from the UK might have better ideas about how to deal with the UK medical system if they won't prescribe appropriate therapy.
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Trell
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Re: New Sufferer
« Reply #3 on: Jul 27th, 2004, 2:59pm » |
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Hi Ronny
7 years??  I think I'd have strangled a few doctors by that time (or myself!!)
The first GP that I saw was a migraine sufferer himself. Also, I had a history of migraines, as well as migraines running in the family. When my first CH hit, I could tell it was no ordinary migraine (No auras, more intense pain than normal, immobility of my neck and shoulders etc.)
He told me what I had, and when I researched it, was in no doubt.
I'm still wondering why other GPs have been reluctant to prescribe me Imigran. It seems to have a good sucess rate, it works for me, it's safe and non-addictive, and I would assume that if used in conjucntion with a prophylactic, I can keep control of the attacks. I have been prescribed diazepam instead, which is a tranq., and, IMO, more dangerous & addictive than heroin., as well as having sod-all to do with cluster headaches.
I'll keep taking the prophylactics, but I don't really want to use the Diazepam.
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don
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Quote:| I understand that these cycles last for up to six weeks. |
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This is painful but the reality is a cycle can last for months.
Check in with OUCH UK. They can direct you to some CH educated Docs.
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Samantha_Smith
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Re: New Sufferer
« Reply #5 on: Jul 27th, 2004, 4:54pm » |
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---"He advised me that he wanted to 'experiment' with me..."
Hey, at least the guy is honest. It took me a few years before I realized that I was being experimented on (and not informed.) In all honesty, I'm sorry to hear about your CH's. I'd take Don's advice and check out OUCH UK so you can get in touch with a neuro who is knowledgable about CH. Hang in there. Keep us updated. Samantha
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Ronny
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Re: New Sufferer
« Reply #6 on: Jul 27th, 2004, 4:59pm » |
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on Jul 27th, 2004, 2:59pm, Trell wrote:
7 years?? I think I'd have strangled a few doctors by that time (or myself!!). |
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7 year is nothing compared to what some people here have gone through.
It's just, i never saw a doc before. thought i had something terminal. F***, sometimes i wish
 Naah, not really.
Ronny.
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FZfan
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Re: New Sufferer
« Reply #7 on: Jul 27th, 2004, 5:32pm » |
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Welcome to clusterville, Trell. Like Ronny said, read up, lots to learn and discover here. One of the things I always recommend right up front is, OXYGEN. Check out the link to your left for the proper equipment, mask, and regulator and then scream at your doctor for it.
Works great as an abortive for the majority of us. You gotta give it a good try.
Best of luck in your battles with the beast.
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IndianaJohn
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Re: New Sufferer
« Reply #8 on: Jul 27th, 2004, 6:18pm » |
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Welcome to Clusterhell Trell, So very sorry you have to be here. Like it was mentioned, diazapam (valium) doesn't do squat for CH. If this is your first GP treatment, try Prednisone, it worked quite well for me at first. Verapamil is another one but it takes up to 14 days to get into your system at level that will work. O2 is a good idea and I use Imitrex nasal sprays.
Another thing, find a doc that won't experiment and will take your condition seriously. I took me several years to find one since I live in a rural area, but don't give up on it. A good doctor can make a huge difference.
Best wishes and good luck
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Did my brains fall out or is this headache over?
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