I have had numerous health issues since being born with Hirschprung's Disease, which left me with a weakened immune system.
Over seven years ago, I have to have three surgeries on my sinuses to remove bone that was blocking my right nasal passage and preventing me from being able to breathe well. It turned out that I had had the problem for many years and that all of my sinuses were completely packed with old...stuff. But from the day of the first surgery, I have had constant pain in my forehead. I expected it would go away in a few weeks, but it never did.
Two years ago, I began experiencing a new pain on the top of my head after smoking pot with some friends (which may or may not be related). It feels like the nerves on the top of my head are being strangled. It comes and goes, but is severe.
I have had MRIs, CAT scans, a lumbar puncher, and blood work, going from doctor to doctor trying to find an answer for both. Finally in February (2009), I tested very high for both Mycoplasma pneumonia and Human Herpes Virus 6. I have since been on both an antibiotic protocol for the pneumonia and an antiviral (Valcyte) for the HHV-6. My doctor says he does not know if the infections are causing the head pain or not, but he said the recovery will be long.
The medications make the pain both in my forehead and on the top of my head worse and I fear that they will never go away. I am unable to function well or have a life. The pain as well as fatigue interferes with my cognition and keeps me down. I am now seeking another opinion on the pain with a doctor of internal medicine.
Weird thoughts have come to mind lately, like that I may have a worm or other parasite in my head that went undetected in the brain scans. If anyone has a suggestion I would very much appreciate it. Again, I have always had physical ailments, but now I am in pain all the time and just want to reclaim my life. Thank you.