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3 years of csf headache

3 years of csf headache

I have had 3 yrs. of what I know is a csf headache, or low pressure headache, as I had a major csf leak during a back surgery a 3 years earlier and know the difference from any other kind of headache.  The problem is the Dr.s haven't been able to find a leak. I have had myelograms and Dr.s have found numerous cysts on my nerve root endings , several in the cervical area, one in the thoracic area, and one in the sacral region.  One burst last summer and I had surgery to patch it, a blood patch wouldn't work.  But I continue to have headache.  
Usually the day starts out alright, but headache gets so bad by afternoon I find most of my time is spent lying down, the only thing that makes it go away.  I have low blood pressure, and often am feverish at night.  All tests come back normal.  Any idea on how to find where this darn leak could be coming from?
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I had a CT/Myelegram done 91/2 years ago with CSF leak had a blood patch and still 91/2 years later still suffer from unbearable headaches, and no one can come up with any answers. Is there anyone in the same boat.
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