Work

Unfortunately I found I was unable to continue working which I deeply regret as I loved my job which I had held for 18 years. This was all the more sad because things have come a bit more under control now but who knows how long that will last. It's individual though so you might be more lucky than I

I have managed to work up until last week. I have my own business, which is really worrying, as there is no sick pay. I'm not sure when I'm going to be able to go back, as what I'm going through is hell at times. So I sympathise with you.

I had to quit work until things got under control. It started pretty low key and then when it got to the  insane, screaming on the floor in the middle of the night routine I obviously had to quit working and sought the proper help which was a neurological surgeon who deals with TN by burning the nerve into dysfunction causing eating difficulties but the TN was gone. Then it came back about 7 months later, did radio frequency surgery again, then it came back 1 and 1/2years later. Did the surgery again and have been pain free for about 8 months so far.  He did it stronger each time so who knows? I quit work because I never knew when it was coming back and I couldn't just stop and come back, stop and come back, never knowing what was going to happen.  So I retired and have very little money but...whatever. I like that I was old enough to stop working and get social security. But there is no doubt whatsoever that TN really really sucks.  All you can do is find a surgeon, not a neurologist who just wants to drug you. Those drugs, for me, were awful and didn't work much.  Find a treatment and get it done! Stop the suffering. Go back to work if you must and keep your surgeon on hand for when it returns ( if it returns, which it usually does).

yes, we are screwed, but hey, it could be Parkinson's or cancer! And there are treatments. Check it out on the Internet, read all about it. Learn, treat, accept, find peace. There IS A WAY!

I have just been reading up on some the TN associations here. They had stories from about 20 people and I noticed that the majority seemed use B12 lozenges which are sublingual and they found this helped a lot. One person said they just do that once a week along with their other medications. may be worth a go

It does help psychologically reading other people's experiences. My chiropractor mention vitamin B Complex, but I will try vitamin B12, when I can get somewhere to buy some. I'm feeling imprisoned at the moment as I'm scared to drive now partly because of the drugs and incase a serious attack comes on. Yesterday my husband came home from work earlier than expected to find me rolling around the garden in agony, tear streaming down my face. He took me to the hospital, where I felt patronised by the nurse but then I saw a lovely young African Dr who listened, which helps! I am now scared to eat and drink as my moth is one of my triggers. I feel a real mess at the moment and can't see a way forward for getting treatment that works. I hope you get sorted Julia, it's no fun!