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By (user no longer on site) OP
over a year ago
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I'm unfortunate to suffer from a condition called Chronic Cluster Headache, I'm curious to see if there are any other members that suffer from the same condition. |
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By *icketysplitsWoman
over a year ago
Way over Yonder, that's where I'm bound |
Poor you; it does affect men more than women.
How often do you get them? I heard something about some people getting them at specific times of the year and to check out allergies to see if relieving those help.
I hope you're seeing a specialist.
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By (user no longer on site) OP
over a year ago
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I've been having them since 2001, and at the moment I'm currently having between 6 to 9 attacks a day. I'm on oxygen and Sumatriptan injections. Have any of you ever had an attack whilst on a meeting? |
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By (user no longer on site)
over a year ago
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yea had a non stop headache for bout 6months,eventually went to see a doctor n was told it was a cluster headache,, !
eventually, bout a year later they stopped never to return-)
bloody awful but they did go.
hope yours go soon |
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Am a CH sufferer of many many years and have been chronic for nearly 8 years. Am currently awaiting the decision on funding for an ONS implant.
Been through the entire range of meds including nerve block injections and DHE infusions.
Not much I don't know about the condition as am kind of a guinea pig for my consultant and even he says i know more than most DR's lol |
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By (user no longer on site)
over a year ago
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"I used to get the same, saw a doctor and they gave me sumatriptan (I think) helped loads and I got a pair of glasses which also helped "
Same here. Sumatriptan and glasses. Now I don't need the sumatriptan anymore. Such a relief... get your eyes tested asap OP and hope it gets better for you x |
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There was a very recent medical program(Here's Health?) on BBC radio 4 that had a specialist on talking about cluster headaches. I think clinic is at St Thomas' Hospital in London. You have to be referred to clinic by GP but maybe they have advice/contact sheets. And check Radio 4 website as prog prob avaiable as a down load. Good luck. |
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By (user no longer on site)
over a year ago
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Been suffering for about 17 years..my brother does too. I've been prescribed 10mg amitriptyline which works for me but the awful side effects took 6 months to subside..persevere..they will go. Cluster headaches are immensely painful I sympathise with you.
Ask for a brain scan..I have a cavernoma which depending on the location can cause many symptoms including headaches. Worth checking out..in my opinion doctors don't take headaches seriously enough...I've had 2 family members discover brain tumours..one didn't survive. I'm not saying that could be your reason but best to be checked out. Keep pestering. Best of luck. |
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By (user no longer on site)
over a year ago
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I had, well used to have cluster headaches after having meningitis. I was first prescribed amitrptalyne but the side effect were colossal the neurologist then changed me to propanalol I think I was on about 40mg I've just finished them and was on a reducing dose for the last 6 months.
Thankfully I've not had another flare Infact the only headache I've had was a few weeks ago after a few bottles of prosecco. |
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