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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Noob thankful to find this board.

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Noob thankful to find this board. (Read 1998 times)

Woody

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CH are the devil's crowbar!

Posts: 4
Atlanta, Ga.
Gender: male

Noob thankful to find this board.
Nov 16^th, 2015 at 9:41am

I found this site by accident this morning, while searching for possible food triggers for CH. I've suffered from CH for years (about 20 or so), but never knew what they were. Like most, I thought they were sinus headaches, because I only got them in the beginning of fall or spring. I have the usual symptoms like tearing left eye (I only feel the pain on my left side), drooping eyelid, throbbing temple, vicious pain behind my left eye, and all I can do is just lie down and roll around in the bed from side to side. Sounds crazy, but hey, pain makes almost anything make sense! Grin

My attacks are episodic, and usually last about 2 weeks and then go away for about a year, until they come back with a vengeance the next year!

A little about me: I'm a professional musician (records, tours, videos, etc.) and a full time college student. I'm 49, and decided to go finish my criminal justice degree. Anyway, I'm VERY grateful for this board, and appreciate the info that's being provided here. THANK YOU!!!

« Last Edit: Nov 16^th, 2015 at 9:53am by Woody »

The world's not getting worse, you just happen to be around to witness the madness this time.

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Peter510

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Don't give out... But
don't give in.

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Wexford. Ireland
Gender: male

Re: Noob thankful to find this board.
Reply #1 - Nov 16^th, 2015 at 12:14pm

Hey Woody,

Glad you found us and welcome to your new second home.

Can you fill us in on some details of your CH journey. For example, were you formally diagnosed by a headache specialist and are you currently working with one?

What abortives and preventatives do you use? Information like that helps us to share our experiences with you and hopefully suggest some alternatives.

Keep yourself well.

Peter.

You don't stop laughing because you grow old....You grow old because you stop laughing.

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Woody

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CH are the devil's crowbar!

Posts: 4
Atlanta, Ga.
Gender: male

Re: Noob thankful to find this board.
Reply #2 - Nov 18^th, 2015 at 11:09am

Sorry it took so long to respond. This is finals and term papers week. As for what I've been given so far, I've gotten 2 injections: Toridol (sp?) and decadron, and was put on a 6 day steroid pack. I'm scheduled to get a cat scan on Monday, and they're going to go from there. Until Sunday, I'd never even heard of cluster headaches! My doctor says that I have CH, but the cat scan is to make sure. After that, she's going to put me on some sort of regiment. I'll keep you posted.

EDIT: Oh, yeah, I almost forgot, she's also sending me to a neurologist.

« Last Edit: Nov 18^th, 2015 at 1:10pm by Woody »

The world's not getting worse, you just happen to be around to witness the madness this time.

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Bob Johnson

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"Only the educated are
free." -Epictetus

Posts: 5965
Kennett Square, PA (USA)
Gender: male

Re: Noob thankful to find this board.
Reply #3 - Nov 18^th, 2015 at 1:26pm

Everything sounds good EXCEPT for seeing a neurologist!
As a group, the have a poor reputation with us because they have meager education/training with complex headache disorders. (Doesn't make sense that this should be but studies of their taining, etc. confirms.)

Urge you to seek a headache specialist.
====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED

Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

« Last Edit: Nov 18^th, 2015 at 1:28pm by Bob Johnson »

Bob Johnson

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Woody CH.com Newbie Offline CH are the devil's crowbar! Posts: 4 Atlanta, Ga. Gender:	Re: Noob thankful to find this board. Reply #4 - Nov 18^th, 2015 at 3:31pm Bob, THANK YOU for the knowledge ammo! I will do this pronto. Once again, thanks. I didn't know things were like that for neuros. I do have to say, my doctor was well versed on CH. I was kind of surprised by that.
Back to top	« Last Edit: Nov 18^th, 2015 at 3:37pm by Woody » The world's not getting worse, you just happen to be around to witness the madness this time. IP Logged

maz

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I Love CH.com!

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Hampshire, England
Gender: female

Re: Noob thankful to find this board.
Reply #5 - Nov 19^th, 2015 at 5:32pm

Hi Woody, and welcome.
I have seen 2 neuros. The first one was a nightmare, at the top of his field but yet he left me undiagnosed and untreated for years. It's a long story, but I was in total despair thinking if a neuro couldn't/wouldn't help me, then who would.
Then one day he decided to palm me off on to his junior. She is fantastic!!! I wish I had seen this junior neuro from the beginning.
So what I'm saying is - give the neuro a chance. There are some good ones out there - and you may be lucky enough to find one first time.

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Woody

CH.com Newbie

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CH are the devil's crowbar!

Posts: 4
Atlanta, Ga.
Gender: male

Re: Noob thankful to find this board.
Reply #6 - Nov 20^th, 2015 at 8:43am

I'll give it a chance and see how the first meeting goes. Btw, after the first 2 days on the meds, and someone sent me vitamin D suggestions, and I have to say, there were no issues yesterday. The first day, there were the twinges and a VERY short (about 30 minutes) pain period, and yesterday, nothing! Not even a twinge. So far, so good. I know I'm preaching to the choir, but that first pain free day is like winning the lottery.

The world's not getting worse, you just happen to be around to witness the madness this time.

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