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Strange Headache for 10+ Years

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Migraine Headache
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Posted 1/2/2009 6:30 AM (GMT 0)
Hi Everybody,

For over ten years, ever since I was about 14 or 15 years old, I have been suffering continually from a headache that has the following symptoms:

- It feels like my brain is hitting the inside of my skull when I shake my head
- The back of my head feels like it's missing
- When I look up, down, or to either side for more than a few seconds I start to feel faint
- The "brain hitting the inside of skull" sensation I described earlier is usually followed by a sort of "brain fog" and irritability; sometimes my speech will even slur.

These symptoms never go away and are constantly present.

I have consulted with a few doctors over the years about this problem, all of whom have told me that, as far as they can tell, I am fine and they haven't heard of such a thing before. I have also had a CAT scan done of my head, and the results were normal.

For a number of years now I have tried to just live with this problem, but this headache pretty much rules my life with me dealing with it and thinking about it nearly 24/7.

My question is: has anybody heard of a headache with symptoms like the above, and what can be done about it?

Thank you!

-jlgero
Posted 1/2/2009 11:48 AM (GMT 0)
Have you tried having a MRI? It almost sounds like something neurological or even more serious like rare blood diseases. I'm certainly not a doctor. I can tell you are concerned and you think something is wrong. Hon, if you think something is wrong, probably is. You need to keep pushing the doctors. Ask for a neurologist. Heck, even try getting an eye exam and see what an optomologist says..sometimes they can figure something out..like in my case, I knew something was wrong with my eye, after my 2 weeks of going to pcp, I went to my eye doctor, he said it was all good but was able to see what I was talking about, said it wasnt anything in my eye. I went back to pcp...told them what eye dr said, they ordered mri..and never made it out of er for a week. still didnt get diagnosed, but my mri showed major swelling and inflamation. after they couldnt cure me, they sent me to an eye institute, after emergency biopsy and another hospital stay i found out i had 2 blood diseases and minuture tumors in my eye and body. Point being, dont give up and you know something is wrong...keep going to the doctor.
Posted 1/8/2009 3:23 AM (GMT 0)
Have you ever been tested for lyme disease?  This sounds very familair to myself, I found out I have severe lyme undiagnosed for 7 yrs.  I still suffer major headache, but the brain fog feeling etc is gone.

Posted 1/25/2009 9:55 PM (GMT 0)
Thanks for your replies. I really appreciate your help.

Lymewarrior, no, I have never been tested for Lyme, though I have been bitten by ticks a few times in the past (including one right on my chest when I was in 7th grade). The symptoms I listed above also aren't the only ones I've experienced; I've had a lot of problems with Depression, Anxiety (diagnosed with Depression and Panic Disorder and was on medication for a number of years), constant fatigue, and blurry vision. I will mention (for sure) Lyme to my doctor and testing me for it next time I visit him.

SmurfyShadow, thank you for the encouragement. I KNOW something is wrong, and I'm determined to figure it out. My greatest fear is that I have something that my doctors aren't looking for because they're not thinking of it or they think it's too unlikely to test for.

Post Edited (jlgero) : 1/25/2009 11:51:23 PM (GMT-7)

Posted 1/27/2009 7:47 PM (GMT 0)
I'm apart of the Lupus group as well since our medications for the autoimmune diseases are the same. They recently made a post on Lupus headaches. If I had to bet, I would say auto immune diseases or neurological disorders. Btw, you can always ask for second opinions too.
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