Occipital Neuralgia Online Support Group

I have had this nasty for two years now. Before this I worked as a Fitness Instructor, Swim Instructor. Loved my work. I got shingles twice ( about three to four weeks between bouts)

The second bout my right cheek became numb and my head began to ache and has not stopped since. I've had physo, acupuncture, massage therapy, and nerve block injection. None of it worked. I know wind, sun, bright lights, loud noise and stress set it off. Pain on a good day can go as low as 3 and on a BAD day 11 (out of 10). Have not found a pain killer that gives me at least a 3 relief (but at least its not still 11). The next day I feel hungover (complete crap).

I've only read a few discussions cause this is my first time at this but

does anyone have arthritis in cervical column. Doctors dont talk much about mine just vaguely agree with me when I enquire about my c-1 and c-4,5 and 6.

Thanks

I'm going on almost 2 yrs with it right now, just turned 54. Had to quit my job in Dec '09 due to neck/shoulder pain, was diagnosed summer '10.

My "cocktail" that seems to work when the pain is the worst (so far) is amitriptyline 75 mg at bedtime, topamax 50 mg at morning and again at bedtime, and fioricet as needed for pain. Also take a magnesium supplment (when I remember to buy it).

As for eliminating the pain - I've not found a magic med for that. Finally I did manage to get the nerve to calm down enough to give a few months of fairly pain-free time this summer, but recently irritated it again and am back to the beginning.

Warning on the topamax - it makes me stupid, high as a kite. I'm happy as can be on it, but my family HATES it. And when I'm on the full dose, they REFUSE to let me drive.

I don't get the hangover effect with the fioricet, and it doesn't seem to knock me out either. Maybe my body has adjusted to it, not sure.

Hope you find some relief, but until then, you have friends here

Annie

I have arthritis in the upper cervical spine. I believe that any problems in the neck that can cause inflammation especially C1-C3 can cause problems with the occipital nerves; ON is also called C2 neuralgia. You also mention shingles and isn't there a post shingle condition that can cause nerve pain of the head?

Chloe

Thankyou for your replies

Yes (Chloe)there is a condition after shingles called "Post Therapatic Neuralgia.

Which is what my doctors call my neuralgia. Ive read quite a lot about this but it does not mention my symptoms in any of it.

I've got appointment in December for a neurologist. Hopefully it will sort out my medication. I've found I cannot tolerate Magnesium. Does anyone take Vit B? How does it affect you? Any benefits?

Thanks Janet