Author |
Topic: What a surprise.... (Read 366 times) |
|
lindysmom
New Board Newbie
Today is B-E-A-utiful... -Bruce Almighty
Gender: 
Posts: 11
|
 |
What a surprise....
« on: Feb 13th, 2005, 4:04pm » |
 Quote  Modify
|
Went to the ER last night after threatening for a couple of days to amputate my head and had a doc say that she would "bet the farm that I've got CH."
Talk about a shock! I'm 30 years old and when I was 16 they said I had MS because of all of the problems I was having until a spinal came up negative. They finally did a MRI and found a small tumor (adenoma) on my pituitary gland and chalked everything up to that. So for 14 years or so I have had bouts of rage, fits of terror, paced miles (literally) and wished for a vice grip for my head when the cycle emerges and even though blood work and everything else showed up fine all anyone wanted to talk about was my damn pituitary gland. Even though the tumor had shrunk considerably on its own about 4 years ago. Until last night, nobody wanted to hear what I would say about things I had read, or found on the net or felt that made me wonder about CH.
For the headache pain (which I always thought was a laugh since it is more like Satan inflicting curses in your brain ), I was given Fioricet (a migraine med)...works great when the pain is about a 4 or less on the KipScale that I found here.
I am so angry that 14 years had to pass with me thinking I was crazy every time my head began to hurt!!!!!!! And yet thankful that someone has seen something else in my pain and has opened a door for investigation.
I still have an MRI this Thursday to check out the "blessed" pituitary tumor to see if it has grown and may be doing anything wacky but it sure does seem like my pain/symptoms are an awful lot like those I've read about on this site.
Thanks for letting me vent and thanks for the excellent site.
|
|
 IP Logged |
Lindy's mom
|
|
|
lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
Gender:
Posts: 2021
|
 |
Re: What a surprise....
« Reply #1 on: Feb 13th, 2005, 4:24pm » |
Quote Modify
|
Hi!
I got my first official CH diagnosis by ER as well. I don't blame you for being angry about not knowing what's going on. It's an awful feeling when people don't get the outrageous pain we have. YOU ARE NOT CRAZY!!!!
Welcome to the sight and read, read, read...lots of info here and things you can print out to take to your doctor. It sounds like you see a neurologist...do you?
read about oxygen(there's a link over on the vertical bar to your left) it's not a med (need a script though)and helps a lot of us and is definately worth a try.
Welcome and I hope that MRI goes well for you!
Be well,
lionsound
|
|
IP Logged |
|
|
|
Redneck
Guest
|
Sorry you need to be here, glad you found it. Read, learn. Have you been put on any preventives or abortives? Gone to see a good neuro yet? Print out a lot of the info and take it with you. Best of luck. And you are not crazy. 
|
|
IP Logged |
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: What a surprise....
« Reply #3 on: Feb 14th, 2005, 1:58am » |
Quote Modify
|
Welcome aboard! 
I am so sorry that you have CH. I am so sorry it took so long time for you to get a proper diagnosis. But it happends a lot with CH. I have met many neuros and still few of them have doubted my diagnosis... 
I do hope that you get now the best treatment and meds which work. Not to mention a doc who knows his/her CH stuff!
I am glad that you found this site, though. You can find lots of info about CH in here. Lots of info about meds & treatments. The more you know about your enemy, the better. Good luck with the battle against the beast!
Best wishes & PFdays,
Sandie
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender: 
Posts: 1796
|
|
Re: What a surprise....
« Reply #4 on: Feb 14th, 2005, 2:54pm » |
Quote Modify
|
Your experience is extreme but all too common.
--------
Headache. 2000 Oct;40(9):730-5. Related Articles, Links
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
PMID: 11091291 [PubMed - indexed for MEDLINE]
|
|
IP Logged |
Bob Johnson
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss