Why is this happening to me!?!?
 

For the past ten years I have lived with Basilar migraines..the kind where you go blind and paralized...then two years ago after horrific sinus surgery (x2) I ended up with Genicular, Occipital, & Cranial Neuralgia.

I am on SO many pain medications. I am practically a walking pharmacy. And now my pain doctor is pawning me off onto another doctor b/c he just doesn't know what to do any more. And I want off my meds and he doesn't feel comfortable doing that.

How am I supposed to deal with the excrutiating daily pain, while trying to go back to school and hold down a job? And getting tossed around between doctors?? This is unimagineable. Plus, I am NOT looking forward to the detox from the pain medications. I never would have gone on them if I had known how bad the detox would be!

My quesiton is; how does everyone else cope with the daily pain? The doctors thinking that you are crazy or med seeking?


Frustrated and missing the trapeze

Girl, I feel your pain... everyday actually. I haven't coped very well to be honest. It took over a decade to get a correct diagnosis of GN. I was told my ears are too clean, and that was the source of my pain..... external ear infection, without fever, elevated white counts, redness, drainage, etc. I was sent home in pain 9/10 with a bottle of ear cleaning drops and some topical antibiotic. It is rough to hurt when no one can see the cause.

I hate the side effects of the medications I have been on. I have been on a ton of anti-depressants and seizure meds, but none have helped. I have not been on any narcotics though. My doctors have all said that narcotics don't help this kind of pain, not to mention that narcotics have never reduced any pain for me (I'm weird like that).

I'm considering the surgery for my GN. My neurosurgeon has put the fear of not walking again (due to vertigo) into me. But I really don't care at this point. For over a decade, most of my family and friends have treated me like I am crazy (similar to most of the doctors). With the support of about 3 friends and my 2 kids, I hang on to the good times we share as a small support group. Find something to focus on that isn't the pain, and makes the pain lessen. It's hard to do. I recently started journaling and poetry about my condition. Not a cure, but I have found some relief from ignorance of others.

Best of luck. Hopefully you will have a better outcome in the future if you are a candidate to have surgical treatment to stop the pain.:D:D:D