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        Cluster Headache Help and Support >> Cluster Headache Specific >> neurologist appt - need advice
        
(Message started by: octobermay on Dec 1^st, 2007, 3:54pm)

Title: neurologist appt - need advice
Post by octobermay on Dec 1^st, 2007, 3:54pm

hi, i had my neuro appt yesterdy. i still am not diagnosed with anything yet. i brought my headche diary with me, and mentioned CH. the only reasons he said it wasnt Ch is because i am not male and because the pain didnt make me hit my head against the wall. He ruled out migraine and a lot of other types. nothing is going on with my head right now. he wants to do tests if they come back. he had me schedule an appt for 2 months from now.

it is definately obvious that females get CH too.

Do all CH make you hit your head? i have gotten to about 8 on kip scale.

what do you think and what would you do?

Thank you

Title: Re: neurologist appt - need advice
Post by DennisM1045 on Dec 1^st, 2007, 4:04pm

Find another Doctor? Did he offer any diagnosis? Sorry hon. You hang in there. I'm glad the head is giving you some relief. Seriously though, I'd get a second opinion from another Neuro.

-Dennis-

Title: Re: neurologist appt - need advice
Post by Kevin_M on Dec 1^st, 2007, 4:46pm

on 12/01/07 at 15:54:30, octobermay wrote:

he said it wasnt Ch is because i am not male and because the pain didnt make me hit my head against the wall.

Hard to gather his fuller knowledge about clusters, but from these statements it sounds like he got his cluster information from some mallrat's blog site who heard it from Cindy that talked with Josh who's sister has a friend who told her...

You may have a slow start with treatment when a cycle appears down the road again due to the time for a diagnosis. Keep this headache log for next time, too.

Title: Re: neurologist appt - need advice
Post by brewcrew on Dec 1^st, 2007, 5:14pm

The guy is a freakin' dingbat. Find someone who specializes in headaches.

Title: Re: neurologist appt - need advice
Post by BarbaraD on Dec 1^st, 2007, 6:22pm

Welllll, I'm a female and I've definitely been DIAGNOSED with CH and I don't always BANG my head (have been known to do so, but not ALL the time).

We all react differently, we're all triggered differently and we all react to meds differently.

I'm with the others about finding a doc who actually KNOWS something about headaches. It may take going thru several (most of us have gone thru a BUNCH before we find one who actually knows something or is willing to LEARN something). The next one you go to INTERVIEW him/her. Ask how many CH's he/she's treated and what treatments he/she has used. If they don't have an answer thank them politely and get the hell out of their office.

In the meantime - Read Read READ this board and LEARN everything you can about this disease. Your best advocate is YOURSELF. Learn everything you can about CH and if need be EDUCATE your doc.

Glad to hear you're getting some PF time right now. Wish that for all of us.

Hugs BD

Title: Re: neurologist appt - need advice
Post by Ray on Dec 1^st, 2007, 6:23pm

Dear Octobermay:

I have had chronic clusters for 20 plus years and have never hit my head on the wall during an attack. I have felt like putting a fist through it, but never hitting my head.

That being said, it is a "red flag" if one does. Are you agitated during a headache, where you can't sit still? Would you rather pace about than sit still and lay down? Those would be signs of CH. Did you take the cluster quiz at left?

I looked at the OUCH US site, http://www.ouch-us.org/chgeneral/doctors.htm for patient recommended physicians, and came up with the following list:

Massachusetts

L.Dana Dewitt
Newton

Peter Zuromskis
Lexington

Brian Lieberman
Norwood

Albert Ackil
Taunton

Dr Paul Blachman
Weymouth

Dr. Elizabeth Loder
Boston

Dr. James Morrel
Charleston

Dr Schoeck
Lawrence

Good luck!

Ray

(Edited to fix highlighting)

Title: Re: neurologist appt - need advice
Post by octobermay on Dec 2^nd, 2007, 6:06pm

thank you so much for responding. all of your answers are what i was thinking. i will keep you updated on what happens. Thank You.

Title: Re: neurologist appt - need advice
Post by octobermay on Dec 2^nd, 2007, 6:26pm

hi, i took the cluster quiz , my answers were -

1 - 8 NO
9 - 11 YES
12, 13 NO
14 - 16 YES

Title: Re: neurologist appt - need advice
Post by Ray on Dec 2^nd, 2007, 8:52pm

Hello again:

The majority of your answers are in line with the symptoms of cluster headaches, the droopy eyelid and stuffy nose questions you answered "no" to are usually associated with cluster headaches.

Regarding the affected side of the pain, my eye also turns red and waters, does yours?

My nose usually runs and gets stuffy, during a cluster headache, the body produces a lot of histamine and causes an allergy-like reaction with the eye and the nose. If you can relate to either or both of these statements, it would sound even more like cluster headaches.

We're not doctors and cannot accurately diagnose you over the internet, but it sure sounds like you may have cluster headaches.

Read all you can here, and that should help you when talking to a headache specialist.

Wishing you the best,

Ray

Title: Re: neurologist appt - need advice
Post by octobermay on Dec 2^nd, 2007, 11:21pm

hi, i did feel stuffy, but i dont know if it was one sided or not. it felt like i had a sinus infection, that was what i thought it was and kept thinking it was even after being told 3 times by different drs that it wasn't. my nose got runny at times, but not enought to want to assosiate it with the headaches. i dont remember anything with my eye, so if there was something, it wasn't enough to remember.

I know that you are not doctors here, i just wanted opinions from people who have CH because people who have it will know the most about it. I know that whatever i have will not be definate until i am diagnosed by a Dr.

:)