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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › History of CH causing Neur. to ignore "new" sympt.

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History of CH causing Neur. to ignore "new" sympt. (Read 1815 times)

Private Aye

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History of CH causing Neur. to ignore "new" sympt.
Jul 16^th, 2008 at 2:32am

I am a CH sufferer. My last series ran 89 daysI It's been 9 yrs since then. recently I noticed several sinus-like symptoms on the opposite side from past attacks but still all located on the same side. Droopy eye (ptsosis), eye edima, red eye and burning cranium. I went through a few dr.'s to rule out stroke, an MRI etc and end up back on familiar ground with a "new" Neurologist who reads my history and tells me....."You have chronic CH"!!!
I know this is no CH! There is no hot-white poker stabbing me in the eye! There is pain yes and a great big swollen droopy red thing where my baby blue eye once was, but not a chronic CH? Is it???? Undecided

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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: History of CH causing Neur. to ignore "new" sympt. Reply #1 - Jul 16^th, 2008 at 2:43am From what you're describing, I don't think so--but I'm no doctor. Sounds like you definitely need a second opinion. Best wishes, George
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Bob Johnson

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Re: History of CH causing Neur. to ignore "new" sympt.
Reply #2 - Jul 16^th, 2008 at 10:08am

If I understand you, there are two separate questions here:

1. The experience/symptoms of an attack can, and often do, change over time. That you are having a different experience now does no preclude CH.

2. Chronic CH is defined by the time you have been having attacks without a break (essentially cycles no longer define your experience). Change in symptoms is not a part of the definition of "chronic".

Bob Johnson

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thebbz Ex Member	Re: History of CH causing Neur. to ignore "new" sympt. Reply #3 - Jul 16^th, 2008 at 11:12am Get a new doc. Quick. thebb
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Private Aye

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Re: History of CH causing Neur. to ignore "new" sympt.
Reply #4 - Jul 16^th, 2008 at 1:11pm

I've got a new Neur. on Fri. Looking for some new way to approach new Dr. Here's the facts:
Symptoms start date- 5/5/08 non-stop as of today.
No acute (jabbing@*,!&% screaming eyeball so far) could this be an extra long "shadow" period? Any eposodic turned chronic out there? I am in agreement with you guys about def. of chronic being same as eposodic but w/o remitting for over a yr. but was'nt sure if maybe this was a 3 mo. "shadow"? ?
Thx for any feedback b/4 fri.

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thebbz Ex Member	Re: History of CH causing Neur. to ignore "new" sympt. Reply #5 - Jul 16^th, 2008 at 1:25pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or You simply need to educate yourself. You are your own best advocate. all the best thebb
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Private Aye

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Re: History of CH causing Neur. to ignore "new" sympt.
Reply #6 - Jul 16^th, 2008 at 5:45pm

Thanks for the new sites. I had heard about the mushroom therapy! Very informative site. The wrong doc is very frustrating and lonely. As I said in my opening post, I have had CH since I was 19 (I am 46) and what I can't seem to get across (so far) to 2 different docs is that what I am currently experiencing IS NO CLUSTER. However may be hypothalmus related.

My general ? to the group here is....."Has a CH sufferer experienced yrs. of relef only to get hemicrania continua or paroxsymal hemicranias?

These are rare just like CH or rarer. THNX AGAIN
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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