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Topic: hemiplegic cluster (Read 471 times) |
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ivanov
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hemiplegic cluster
« on: Sep 9th, 2005, 12:21am » |
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Does anyone have hemiplegic cluster headaches or know where I can access medical info about this cluster variant. I have an appointment with a new neurologist and need to arm myself
with the latest info before I see him.
Dan
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ivanov
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Re: hemiplegic cluster
« Reply #2 on: Sep 9th, 2005, 10:15am » |
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No, these are not hemiplegic migraine. They have all the classic
cluster characteristics - running nose, eye tearing and pain on
the afflicted side, trigeminal nerve involvement lasting from 30
minutes to 3 hours. They occur 4 to 6 times a day at approximately the same time. Plus there is pain and paralysis on the same side as the headache.
Dan
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floridian
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Try a neurologist. Not trying to be flippant, just think that not only is this rare, it demands serious professional attention and most people here (myself included) know little or nothing about the hemiplegic variant.
Quote: Headache. 2002 Feb;42(2):136-9.
Hemiplegic cluster.
Siow HC, Young WB, Peres MF, Rozen TD, Silberstein SD.
Jefferson Headache Center, Department of Neurology, Thomas Jefferson University Hospital, Philadelphia, PA 19107, USA.
We report four cases of a new variant of cluster headache associated with hemiparesis. Clinical similarities with hemiplegic migraine suggest that hemiplegic cluster, too, may be a channelopathy. One of our patients had a family history suggestive of an autosomal dominant inheritance. |
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Channelopathy = disorder of ion transport channels - the sodium or calcium or magnesium isn't moving the way it should. One commonly used preventive is verapamil, a calcium channel blocker. Lithium, magnesium and kudzu can also affect the ion channels.
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| « Last Edit: Sep 10th, 2005, 9:00am by floridian » |
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Pinkfloyd
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Re: hemiplegic cluster
« Reply #4 on: Sep 10th, 2005, 8:53pm » |
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Dan,
You won't find much information on this subject as it pertains directly to "hemiplegic cluster headache" if you search databases just for that particular string. Of course there is quite a bit on hemiplegic migraine. Although that in itself is rather rare, the data on it is becoming more available.
I'm not questioning whether or not you have hemiplegic clusters, but, whether you have a BAM variant or a cluster variant, I suppose only a neurologist well versed in headache, would (or has) be able to tell for sure.
Whatever the case, whenever hemiplegic symptoms exist, triptans and ergots MAY be strongly contraindicated. They certainly are where BAM is concerned and there is so little available information or archived discussion on hemiplegic clusters, that this connection should certainly be considered. If you find a neuro that isn't familiar with BAM and the like, they might not be well versed on contraindications that should be considered.
good luck,
bobw
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ivanov
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Re: hemiplegic cluster
« Reply #5 on: Sep 10th, 2005, 10:50pm » |
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Thank you gentlemen for your input. I did know about the drug
contradictions with the hemiplegia. I hope this new neurologist
is more competent then my last one - he told me he was to afraid to treat me after I waiting four months for an appointment. Wish me luck.
Dan
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Pinkfloyd
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Re: hemiplegic cluster
« Reply #6 on: Sep 11th, 2005, 12:09am » |
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on Sep 10th, 2005, 10:50pm, ivanov wrote: I hope this new neurologist
is more competent then my last one - he told me he was to afraid to treat me after I waiting four months for an appointment. Wish me luck.
Dan |
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At least he was honest enough to tell you, in essence, that he wasn't sure how to safely treat you instead of hoping he knew what would be best for you.
Finding someone 'competent" enough to treat your rare set of symptoms will be difficult. IMHO, you will most likely will be best served finding someone that is willing to treat you safely while you BOTH learn about your condition.
You may want to make your situation known through email, to some of the top headache specialists, Goadsby, Young, Kudrow, etc (if I mention too many of them, people will begin arguing about who is good and who isn't  ) and maybe one of them might take an interest in your case. Maybe not enough to treat you, but enough to consult with that Neuro that you will hopefully find that wants to learn 
Good luck Dan,
Bobw
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"Nothing is so firmly believed as what we least know."
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[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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LeLimey
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Re: hemiplegic cluster
« Reply #7 on: Sep 11th, 2005, 3:39am » |
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Hi Dan,
I'm sorry I'm late with this info but its important so please forgive the fact I've IM'ed you with it too.. I really want to make sure you see it though.
Helen
Quote:Hemiplegia involves the partial paralysis or other adverse neurological symptoms such as tingling or numbness on other parts of the body, usually on the pain side.
ANYONE with these symptoms should be warned away from triptans or any vasoconstricting drugs until seen by a specialist and gaining a solid and confirmed diagnosis of what type of HA they have as there could be real risk of stroke if they vasoconstrict. |
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| « Last Edit: Sep 11th, 2005, 3:49am by LeLimey » |
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Kate in Oz
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Re: hemiplegic cluster
« Reply #8 on: Sep 12th, 2005, 11:45pm » |
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Jeepers,
I get more info on here than my neuro has ever been able to help me out with. For years now I've been telling him that when I get a ch I get pain in my arm on the same side..... his reply - nothing just take these pills...not working? ok take these pills and so on and on and on... i've had the vasowhatevers the lot urgghhhhh  all so bloody frustrating
Kate
p.s. sorry hope you don't feel i've hyjacked - just need to voice my frustration and thanks  for passing on the info
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