I have only been dealing with this since Sept 20, 2013, but it came on fast and severe.. From my experience, something unknown attacked my body while I was abroad (toxic, virus, internal malfunction) Initially I was left with Constant Bilateral Facial pain that started in my left clogged ear, but when they irrigated it it spread to my left side of my face and quickly to both sides. It stayed like that for 3 months until my feet, legs, and hands started to get involved.


I'm 25 and was very healthy, but that part does not matter as much anymore, I would trade my healthy look a million times over to actually feel healthy,, but of course I have completed hundreds of tests and been to many neurologists whom until recently said it was all in my head..


It wasn't until I had an appointment with an Autonomic Nervous System Neurologist @ the Mayo Clinic did I get some answers. Of course again all the blood work comes back normal (but there were some oddities during my tilt table test) and per the post above the Dr. confirmed they just can't look into this as detailed as they would like due to lack of technology.

What they could tell me was that my autonomic nervous system was affected, and that was why myself and someone could have free floating adrenaline rushes or other strange sensations. The hard part with the small nerve fibres is that they literally run up and down the entire body.

Gabapentin has given me minimal relief as well, for it seems whatever is going on inside of me is more powerful than the medicine and just runs it over unless i'm drugged to the point of questioning the point of existance.

The neuronapathy is destructible in my instance so far only my clonazepam. But be ready for some changes.. It might not happen to you, but I had sever self derealization to begin with and led me to try to get off of it 3 times before i realized it's pain relief along with its side effects were still worth it.

I understand it is an addictive drug, but it is long lasting and if it works for you I think it is the best option until medical community gets a better grasp on how to treat this disorder.

Some other things that work for me is that I am in bed by 9pm and usually sleep restlessly till about 6:00 I than stay in bed another hour or two and try to enjoy the fact that my nerves are quieted.

This gives me a few hours of nice relief until I start to have to rely on my medication to get through the rest of the day.

6:00 am - Gapapentin 300mg
9:00 am - Clonazepam .5 mg
12:00 pm - Gapapentin 300mg
3:00 pm - Gapapentin 300mg
6:00 pm - Gapapentin 300mg
9:00 pm - Clonazepam .5 mg


p.s. does anyone know the best doctors or technology available to actually look into the dorsal root ganglion or whois leading the way in how to best to treat central pain syndrome.

Thanks
Casey