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furrfish
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Neurology Diagnosis of Cluster Headaches
« on: Dec 25th, 2003, 11:06pm »
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Hellow CH friends, this is Furrfish.  A chronic sufferrer that is waiting for an upcoming Neuro appointment in February.
 
I have already been diagnosed by my VA doctor for cluster headaches and a referral to neurology.  I have went to countless numbers of sites to see what a neurologist is going to do...now I would like to hear from you my friends.  Start from the beginning.
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don
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #1 on: Dec 25th, 2003, 11:11pm »
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Depends on the neurologist and what he knows.
 
If your looking to find a standard procedure and prescribing method that all neuros use, there isn't one. More precisely they dont all use the ones that are appropriate.
 
Should be and they should but but there isn't and they dont.
 
Neuros run the gamut of being very CH knowledgable and prescribing the correct treatments to complete idiots sending you off with a handful of oxys.  
 
What the neuro does may depend larglely on what you know and what the Doc is willing to listen to.
« Last Edit: Dec 25th, 2003, 11:18pm by don » IP Logged
jonny
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #2 on: Dec 25th, 2003, 11:15pm »
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Any neuro will go for an MRI.....Halo city.....LOL, hope your cool with really thight spaces Grin
 
..............................jonny
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don
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #3 on: Dec 25th, 2003, 11:21pm »
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Yup, MRI and CAT scan to eliminate other cause......BUT........just recently I read here that an insurance company was denying payment for those tests for chronic headaches as they for the most part show nothing that is a causal for the headaches. So you may get them you may not.
 
See what I mean in my above post? It all depends on the individual neuro.
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #4 on: Dec 25th, 2003, 11:29pm »
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Gee, it takes you two posts to say what you mean?
 
Next time just spit it the fuck out in one post.....LMMFAO.....Grin
 
....................jonny
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #5 on: Dec 26th, 2003, 12:29am »
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on Dec 25th, 2003, 11:29pm, jonny wrote:
Gee, it takes you two posts to say what you mean?
 
Next time just spit it the fuck out in one post.....LMMFAO.....Grin
 
....................jonny

 
LMAO!!
 
Ramon's neuro didn't know about clusters... and so he asked a lot of questions, and then gave Ramon amitriptyline and indocine (used for another kind of HA).... LOL
 
we fired him ~~  
 
tina
« Last Edit: Dec 26th, 2003, 12:33am by Woobie » IP Logged
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #6 on: Dec 26th, 2003, 2:15am »
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Welcome aboard Furrfish.  I don't know what neuro you will be seeing, but if you have a choice and are willing to drive about three hours I would highly recommend mine.  Dr. Thomas Freedom is quite knowledgeable about CH, and is very good to work with.  He believes in listening to the patient rather than going strictly by "the book".  I don't have his address available at the moment as he is leaving Loyola at the end of the year, but he will be going to the Glenview area.  If you want his info email or IM me and Iwill send it right back to you.  I don't know how heavy his load will be at the beginning as he is taking over the directorship of a dept., but if possible he will work you in.
 
Expect an MRI and CAT scan with possibly an MRA thrown in.  Then expect to be experimented on with meds as no two clusterheads react the same to any.  Insist on O2.  It is effective for most of us and has no side effects/
 
BTW, we have a meet and greet for clusterheads in Davenport IA in Jan.  See the post about the Midwest Meet and Greet and come get acquainted.
 
Jerry
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #7 on: Dec 26th, 2003, 6:31am »
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Welcome aboard.
 
The many neurologists that I've seen for my epilepsy as well as CH, have been good eggs but usually quiet types. The tests are painless but incredibly boring. Hopefully, you'll find one with some CH knowledge.  
 
My advice is to let him know that this horror has nothing to do with what people think of as headaches and that they wake you out of a sound sleep and you cannot relax, or sit still during an attack. This may help avoid a migraine only diagnosis.  
 
Stick around and let us know how things are going.
 
Charlie
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #8 on: Dec 26th, 2003, 3:44pm »
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This is what I do, I read everything I can about these things on this site, maybe I'll print some things and take them to my GP, but of course I have a great GP and he will basiclly prescribe anything I want. I can get in usually the same day I want to. Instead of waiting 2-3 months. If I want 02, trex, verap, amerge whatever he'll just write the script, he will also suggest things. I'll come on here and ask about them, my CH family will tell me what they think and I'll make a decision.
 
But he'll make sure I'm safe and not mixing the wrong things.
 
I've had zero luck with Nero's but that's just me. I've never met a Nero that could speak good english.
 
That's just me.
 
LEE
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furrfish
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #9 on: Dec 27th, 2003, 10:28pm »
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Thanks for all of the advice.  I am up against a big beast when it comes to this diagnosis.  I guess my main concern is whether or not he/she will have enough compassion to understand what I am going through.  The beast I am going up against is the VA.
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Re: Neurology Diagnosis of Cluster Headaches
« Reply #10 on: Dec 27th, 2003, 11:12pm »
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on Dec 25th, 2003, 11:06pm, furrfish wrote:
 A chronic sufferrer that is waiting for an upcoming Neuro appointment in February.

 
OMG...That's a L O N G time. WTF ?? I'm not sure we're suffering from the same condition.  Shocked
 
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