Hello all..

I have Peripheral Neuropathy (affects both feet and both legs) and Radial Neuropathy (right arm and right hand). That should be enough for a person to deal with. I suffered from Trigeminal Neuralgia prior to having surgery for it about 5.5 years ago. I have had no symptoms since then and the surgery literally gave me my life back. On Monday of last week, at 2:35am I had a very bad attack of Trigeminal Neuralgia. My first attack since surgery and I was crushed. I just can't believe I have to go through this again. Now I am having attacks on a daily/nightly basis. Severe and extremely painful attacks. None of the major medications for this have helped me in the past. I can't believe that more research has not been done on this. I would assume because it's kinda rare. Lucky me. Through my experiences last time, I found that most doctors have heard of it (most of them anyway) but know nothing about it. I have actually had ER doctors ask me what it was. Not very encouraging and really frustrating. What the hell is going on with my nervous system?

For those that aren't familiar with Trigeminal Neuralgia - https://en.wikipedia.org/wiki/Trigeminal_neuralgia

Sorry...I'm not looking for any sympathy...I'm just venting.

Hi Zatochi

Even though you're not looking for it you have my sympathy or more accurately empathy - I understand what you're going through - I have body-wide PN - had first Trigeminal Neuralgia (TN) attack in 2014. It spontaneously resolved after about 4 mths then has fired up again daily since a couple of weeks ago.

From what I've read of others experiences I don't think mine is quite as severe as many - that could be because I've been on a maintenance dose of steroids for 6 yrs for an auto-immune condition and they may be providing some analgesic effect. During my first attack I noticed that when I increased my steroid dose temporarily due to infection - it helped reduce the pain & frequency of TN. Recently I've had increased pain with PN & osteoarthritis and suspect that may have reactivated the TN.

I know many people are reluctant to take steroids unless they have to so I'm not proposing this as a solution - all the best for finding some way of managing the pain.