Severe Headaches/Undetermined Cause


I have been experiencing severe headaches for aproximately 18 months. The pain is so intense that I must go to bed. These headaches last from 1-5 days.

I have seen a neurologist who ordered 2 CAT Scans, 1 MRI, an EEG, a battery of blood tests and a Lumbar Puncture. All of the test results were "normal". I have also seen an ENT and Oral Surgeon and neither could identify a cause for the headaches.

My HIV doc put me on a drug holiday for 4 months and during that time, the headaches did not happen as often, but still ocurred 2-3 times a month, and were of the same intensity as when I was taking meds. Now that I am back on meds, the headaches seem to be increasing in frequency and intensity. The neurologist prescribed Oxycontin 40 MG B.I.D. because no other medicine had any affect on the headaches.

Can you offer any treatment advise or are you aware of any studies either underway or completed, that concentrate on headaches and long-term HIV exposure? I have been HIV+ since 1984 or earlier. Thank you for any assistance you may provide. Jackson Brewer


I assume that your spinal fluid was checked for HIV and was found negative. There have been some cases of progression of neurologic disease among patients on HIV meds that seem poorly understand. Some patients with headaches have been helped by medications like Neurontin-has than been tried yet for you?? I have also tried switching the HIV meds around in various ways (for example no NRTIs) to see if an obscure drug toxicity is involved. I am not aware of any study that is focusing on headaches per se--help out there in cyberspace. KH