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        New Message Board Archives >> Jul-Sep 2003 >> mis/un diagnosed
        
(Message started by: hopefull on Jul 21st, 2003, 1:12pm)
Title: mis/un diagnosed
Post by hopefull on Jul 21st, 2003, 1:12pm
How long did it take for your Dr. to correctly diagnose your headaches....Me...MD's missed it for 28 years said it was migrains... last month they gave up and sent me to a neuro and thats when i had a name for my hell on earth...CLUSTERHEADACHES!
Title: Re: mis/un diagnosed
Post by Brian_Y on Jul 21st, 2003, 1:16pm
I went to countless doctors (most notably an ENT) and no one had the slightest clue.  It was not until a trip to the ER one night while I was in graduate school in Iowa that a nurse came out the car where I was waiting, gently placed me in a wheelchair, and then slapped some Oxygen on me.  It was gone like magique!!!

I conveyed this story once before, but I bought her a bottle of Dom for that night.  Of course, it still remains un-fun having them, but I know what they are now.  

I guess the period between first getting them and this sweet angel of mercy fixing me was about 10 years.  It was pure hell those 10 years....
Title: Re: mis/un diagnosed
Post by JDH on Jul 21st, 2003, 1:48pm
I was diagnosed very early on in 1985, right after I started getting them but have only been using "effecticve" meds since 1998.

Jim
Title: Re: mis/un diagnosed
Post by Mark C on Jul 21st, 2003, 2:03pm
Started getting HA when I was about 13....mis-diagnosed, mis-treated until I was about 30. I will be 42 this year. Treatments have gotton better in the last few years with Imitrex and such....but it still is the "most painful condition known to man".

PFDAN's
Mark
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 7:58pm
and then when you are told you had CH some doubt you anyway...cause after all it's not like theirs so must not be CH
Title: Re: mis/un diagnosed
Post by Ueli on Jul 21st, 2003, 8:43pm
Wow, homealone is a newbie just the way we like them.   ::)

Less than 2 hours within signing on she/he has already written 2 post criticizing others; that must be a new record!  :-/

homealone, how about filling out your profile and then telling us a bit more about the new board police? Does he/she/it have clusters too and what is the treatment? And why don't you answer the question of this thread?



My neuro did some simple tests and asked some questions and came up with the diagnosis within 15 minutes. BUTT my first GP liked more to gossip than to read books, and he prescribed Aspirin. Luckily he retired soon. The new GP hadn't no clue either, but he sent me for a CAT scan, to the ENT and soon to the neuro. It took me less than a year to diagnosis.

PFNADs
Ueli
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 8:50pm
yes i have cluster headachs...and have had many meds...after reading a few post why should i hold back ya'll certinly don't
Title: Re: mis/un diagnosed
Post by Giovanni on Jul 21st, 2003, 10:27pm
I was really lucky in being properly diagnosed quickly by a primary care physician and then referred to a neurologist specializing in "headaches".  I am still with the same doctors and have been satisfied with my treatment by them.  I have told my physician about this site and have emailed her a link.  Hopefully, she will visit here and get a feel of what we go through on a personal basis.
Title: Re: mis/un diagnosed
Post by catlind on Jul 21st, 2003, 10:30pm
Homealone do you know who Prof. Goadsby, Dr Kudrow, Dr. Dodick, or Dr. Rapaport are?  

Cat
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 10:31pm
Whats your point!
Title: Re: mis/un diagnosed
Post by catlind on Jul 21st, 2003, 10:33pm
Ummm no need to get upset, I simply asked a question.  After reading the threads with yourself and hopeful I wanted to know.  If you'd like to answer I'd be happy to tell you my point.

Attacking me with what's your point when all I've done is ask a simple question of you isn't necessary, I don't bite.

Cat
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 10:36pm
everybody else seems to it hard to defend your daughter when everyone no matter what you say or the Dr. for that matter says you  are all wrong. and you have no leg to stand on...nothing personal cat
Title: Re: mis/un diagnosed
Post by catlind on Jul 21st, 2003, 10:43pm
My point homealone, is that those are 4 of THE leading doctors in CH, perhaps you can email them with your daughters information to ask them about consultation for abberations of refractory CH.  

One neurologist diagnosing CH does not make it right or wrong, and as you suffer with CH yourself, you know that 20 hours is an abberation.  I highly doubt that any standard neuro would be able to treat a case of that extent and feel that you would do your daughter best by contacting one of those four to get the best information out there on CH.

These are 4 of the doctors that are out there, along with researchers such as Dr. Bigal (who would perhaps also be a contact point) that have gotten as far as we are with CH treatment and understanding the fact it is a hypothalamus derangement that causes it to begin with and would be the place to go to get help with a case that is an abberation.

Cat
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 10:45pm
Thank you for the imfo I'll pass it on to her
Title: Re: mis/un diagnosed
Post by don on Jul 21st, 2003, 10:49pm

Quote:
after reading a few post why should i hold back ya'll certinly don't


Because your an arrogant little dick head who has no fucking manners Howws that for an answer.
Title: Re: mis/un diagnosed
Post by kim on Jul 21st, 2003, 10:51pm
I know you.  You are familiar and you have a daughter dotcha????

Read the info and do the work.  And stopfuckin with people!!!!!!!!! >:(
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 10:52pm
Oh thats rich coming from you..*LOL* i haven't felt so good in a long time...getting that blood moving laughing my ass off thanks
Title: Re: mis/un diagnosed
Post by kim on Jul 21st, 2003, 10:54pm
You guys on?   It's HER.
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 10:56pm
Ya'll are a kick in the ass*LOL*
Title: Re: mis/un diagnosed
Post by kim on Jul 21st, 2003, 11:15pm
DJ, I'm so sad.  I'm just so fucking SAD.

I'm sorry that I was always so gullible.  It made me happy to fuck around and make a smile, ya know?  Now........I feel like some fucking slimy worm got inside and took all the good and made it goop.  Crying. ...........Kim who thawt everyone wuz just like me.   :'(
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 11:17pm
*LOL*
Title: Re: mis/un diagnosed
Post by OwieMan on Jul 21st, 2003, 11:17pm
:'( ??? :( :-/ :) :D ;D ;)

Be happy
Title: Re: mis/un diagnosed
Post by homealone on Jul 21st, 2003, 11:21pm
That's all you can try to be but the pain sure tries to rob it from you iI've seen it to many time
Title: Re: mis/un diagnosed
Post by Cendie on Jul 22nd, 2003, 2:11am
I think the problems with diagnosis comes from lack of information. There was an excellent article in Time (Europe) last November about headaches, it seems the doctors are finally starting to open up their minds about headaches, rather than trying to make individuals fit into their text books, hopefully within a few years they'll begin to understand that terms like Migraine, Cluster, and Tension are immensely broad and often overlap.

My headaches start in my back and neck, I have a tight band around my head,  and are usually triggered by stress.... tension right? =P  I see massive quantities of rainbow spots in my vision prior to running for the bedroom, If I don't take something as soon as I see the spots... I will pay dearly for it, I'll hide from light, sound, and smell like they are the plague... Migraine right?

*triptans usually don't work for me... well then it can't be migraine...  Here, lets put you on prozac as a preventative, because it'll increase the serotonin available to your brain, thus fixing your real problem.

hahaha, the best doc I've found was a GP who didn't try to diagnose me, but gave me a drug that worked, fiorinol with codeine, he tolerated my refusal for the preventative rat race, (I let them guinea pig me for a couple of years before I got fed up), he shot me with demerol when I needed it, and didn't treat me like a junkie.

I have -0- faith in doctors.  I'm sure there are some good ones out there, I just haven't encountered any.

;)


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