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Old 02-28-2009, 06:39 PM #10
glittergirl glittergirl is offline
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Join Date: Feb 2009
Location: OHIO
Posts: 18
15 yr Member
glittergirl glittergirl is offline
Junior Member
 
Join Date: Feb 2009
Location: OHIO
Posts: 18
15 yr Member
Smile headaches

Hi there!
I know EXZACTLY how you feel and what you are going threw!!!! I have had MAJOR CONSTANT headaches for a little over 4 years- I have NEVER had headaches before and NEVER took anything for the tiny little normal headaches I might of ever had before the constant big headaches happened. I have been to ALL kinds of hospitals , had all kinds of tests even went to the CLEVELAND CLINIC and had all kinds of NEOSURGENS doctors and IV therapy tests etc there. nothing was found- no one had any clue what was happening to me- they basicly made me feel like I was crazy and used me as a ginny pig for test upon tests. Sleeping in bed is all I ever did- I couldnt work because of the headaches and NO ONE understood! It wasnt til last year I started to fall down alot and not take much care of myself...(that is sooo not me) actually alot of strange things started to happen...then I kinda went blind even...Thats when I went into the hospital and here they found that I had a cyst in my 3rd ventrical of my brain that grew to stop my spinal fluid from going around or where it should be. I had to get ASAP brain surgery of a vpshunt. My pressure is great but guess what? Its only been 6 short months that I have had the shunt and I am starting to get the constant headaches back It was great not to have headaches again that I even forgot what it feels like not to have one. I am sure you know that feeling. I might have some infection brewing or something in me for I dont understand why I am having headaches again...As for you, have any doctors checked your pressure in your brain? that sounds exzactly what had happened to me- I am soooo sorry for I know how you feel and what your going threw-but just know one thing.... YOU ARE NOT ALONE & soon they will find out whats going on and it will all be over with! if you need a friend to talk to I am here Take care and try to hang in there










Quote:
Originally Posted by ES84 View Post
Hello all,

I'm 24 and I have had a headache 24 hours a day, 7 days a week for 4 and a half years. It has impacted my life in ways I never thought possible, disabling me and preventing me from doing much.

I have seen every type of specialist, been on about 25 meds, had every diagnostic exam (MRIs, MRAs, MRVs, CAT scans, lumbar punctures etc) and had them repeated, had several types of injections, biofeedback, pain management programs, lots of continuous IVs: DHE, magnesium, depacon, zanaflex, dexamethasone and a few others.

Until a few weeks ago, it had been 2 years since I had an MRI. Until then every type of diagnostic exam I had come back normal. This one showed the I have a cerebrospinal fluid leak and the CSF is accumulating in my lower back. I had back surgery to remove tumors, surgery on my nose and 3 lumbar punctures (spinal taps). I believe any of these can cause a CSF leak. Anyway the CSF leak may be causing my headache; I will see my neurosurgeon soon and learn more. The fact that I have a CSF leak is the best news I've gotten in years.

Here's to hope that the leak is causing my headache so I can get my life back.

ES
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