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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> trigeminal autonomic cephalagia
        
(Message started by: phil_h on Feb 23^rd, 2005, 3:00pm)

Title: trigeminal autonomic cephalagia
Post by phil_h on Feb 23^rd, 2005, 3:00pm

I just started with my 5th md. Dr. lay Headache Inst. of N.Y. Seems like good news and bad news. Dr. is very knowledgable and understanding . she changed my rxs and assures me she can help me survive my headaches. however she told me I,m not chronic clusters as previously dx. 4 times . she dx. me trigeminal autonomic cephalgia . I felt very positive about rxs. and the level of expertise of the Inst. ,then I got home and looked this dx. up. I'm pretty sure this is not good. Any feedback , suggestions,experience,strength or hope you guys. You guys have gotten this far. Help! phil h

Title: Re: trigeminal autonomic cephalagia
Post by pubgirl on Feb 23^rd, 2005, 3:09pm

Phil

I'm pretty sure you are right that this is not good. The very first level of research we all do (and we aren't neurologists!) is to read that:

trigeminal autonomic cephalgia or TAC is a name for a group of headaches of which CH is one.

Literally

trigeminal = affecting the trigeminal nerve
autonomic= other autonomic symptoms present e.g. nose or eye running etc
cephalgia = headache.

Sorry but your neuro sounds like an incompetent arse.

Why don't you tell us a bit more about yourself and what you are suffering

Wendy

Addendum:

This "diagnosis" of a TAC (hahahah, but it isn't really funny) is like telling someone that they have a URTI (upper respiratory tract infection) but failing to decide whether it is the common cold or pneumonia. i.e. the neuro has quite brilliantly decided that you have a "one-sided headache" but is hedging their bets by not defining which one it is. This wouldn't be a problem if all the treatments were the same, but they fundamentally AREN'T!

Title: Re: trigeminal autonomic cephalagia
Post by Kris_in_SJ on Feb 23^rd, 2005, 8:47pm

Sorry you're suffering, Phil ... But Wendy is right. Your new neurologist just gave you a fancy new name for Cluster Headaches.

If you feel comfortable with the meds she's prescribed, fine. Try them. If they work, please pass it on to the rest of us.

TAC ... Clusters ... They're all the same basically. As yet, no known cause, no known cure. We can only hope for something that gives us relief from the unbearable agony. Please keep in touch and let us know how things go for you.

Hugs,

Kris

Title: Re: trigeminal autonomic cephalagia
Post by pubgirl on Feb 24^th, 2005, 5:41pm

Sorry Kris, that isn't right. TAC's is absolutely NOT another name for clusters. Clusters are one of the group of TAC's, so is PH, so is SUNCT, etc etc etc.

It isn't a diagnosis at all. This brilliant neuro hasn't even diagnosed Clusters, they have told Phil he has a one-sided headache where his nose might run which I suspect Phil knew already.
Give the doc a Nobel prize for medicine!

None of this helps you much Phil, apart from the certainty that this neuro isn't up to much. What have they prescribed for you?

Wendy

Title: Re: trigeminal autonomic cephalagia
Post by yikes-another-one on Feb 24^th, 2005, 6:44pm

www.asra.com/meetings/2003spring/abstracts/A44.pdf

very intersting if you do a yahho search on the T.A.C.

I found this article....stimulating the occipital nerve...
may make chronic ch less frequent.....???
one case out of a million,

but who's going to get the leads
implanted in their heads???? ugh.

Title: Re: trigeminal autonomic cephalagia
Post by pubgirl on Feb 25^th, 2005, 10:06am

I can't make the link work, but if you are talking about the ONSI (Occipital Nerve Stimulator Implant), there are lots of threads over the last couple of years on ch.com and OUCH UK about it.
It isn't particularly dangerous as the "leads" and "powerpack" (obviously these are not technical terms ;;D) are under the skin, not in the brain, but the results are still very, very patchy. Some sufferers have had some good results, some none, but there are still lots of problems needing ironing out, one of the biggies is that the batteries don't last! This necessitates a further op' even for those it works for.

Prof Goadsby and the surgeon who are doing these in the London Institue of Neurology are giving a presentation on ONSI at the OUCH UK Annual Conference in June so we can give you a breakdown after that of what they say if people are interested

Wendy