I was hoping that some of you could share your advice with me, as I have been having an extremely difficult time with headaches! Here is my story (I also wanted to add that I'm a 17 year old female)
3 years ago I started to have headaches a couple times a week. Doctors thought of them just as regular headache, and taking over the counter medicine usually helped, so there was no issue.
However, at the end of February things started to change. I began to have episode of dizziness (not vertigo, just an unsteady feeling) or lightheadedness for very small amounts of time each day and my headaches became more and more frequent. I went to my doctor and they originally suggested that I stay hydrated and that should help my dizziness, However that did not help and my dizziness episodes became more frequent and my headaches became almost constant. One night, every few minutes, I would have am episode of lightheadedness, or feeling disoriented or my vision would be shaky along with a constant headache. The next day I went to the ER and they tried to see if reglan would help. It did not and my condition got worse so I returned to the hospital 2 days later. Over the next 3 days I had a CT scan, a spinal tap, multiple blood tests, and eye exams. The doctors originally had seem a very small amount of pressure on my optic nerve, which prompted all of this testing. My CSF pressure from the spinal tap was a little over 20, so I tried some diamox since nothing else seemed to be helping. When I returned for a neuro-opthamology appointment, no pressure was found on my optic nerve, so the doctors realized that they had not found the cause of my now constant headaches and disoriented feeling.
Since then I have gone to at least 10 specialists in different areas to try to determine the cause of my constant headaches and dizzy/disoriented feeling and occasional shaky vision. I have had the tests I listed above such as many blood tests, CT scans, MRIs, a spinal tap, and EKG, and vestibular testing. All of these tests have come back mostly normal. Bcause of process of elimination, a headache specialist thought that this is all migraine related. None of the migraine medicine she gave me had been working, so she decided I needed an IV treatment of the migraine protocol to break my headache. Unfortunatley, I had an allergic reaction to one of the medicines, DHE. Additionally, I ended up staying in the hospital for 4 nights at the end of May with IV medicine trying to break my headache and it was not successful.
I have tried countless medicines and tests and nothing seems to work. I have had a constant non-stop headache since March along with a disoriented feeling with dizziness and every once and a while shaky vision. The pain rating of my headache varies throughout the day along with the rating of my dizziness and lightheadness. Currently I am on three pills of periactin a day. I can take a combo of naperlan and imitrex if my head pain is unbearable to help calm it down, although it never takes the pain and dizzy or disoriented feelings fully away. At this point, nothing has stopped or has noticeably helped my headache and disoriented feelings. My doctors believe it is migraine, but none of the treatment for migraine has stopped it. I have also tried to see if anything triggered my migraines, We even eliminated stress by having me not ake my final exams. This still did not help. I also have completely gone off any over the counter meds such as advil or ibuprofin for several months now.
I am desperate for a solution and would love some helpful ideas or tips. I have another appointment with my headache specialist on Thursday to have an appointment and also receive more IV treatments. I'm afraid that this will not work once again and I cannot live with this headache any longer,over 3 months of constant head pain is rough. My entire life has been changed because of this condition and I'm ready for it to return to normal. Thanks for your advice!
Post Edited (cdancer) : 7/7/2013 7:26:30 AM (GMT-6)