I think it is good to remember that you will have several "New Normals"----
Just as when you discovered lupus and Sojourns - two very icky things that wear you out!
I always wanted to be normal again after the first month of this --- "well I was never normal - always silly LOL"
But had to find a new normal and went into deep dark depressions off and on- could not get a job and trying to be a newlywed at 40 something and dealing with this was the umpteenth hardship in my life - but one I did not bounce right back from!!!
Always resilient till TN!!!!
Kept coming here to say hi to others, or to get some advice-- that helped along with antidepressant.
I lost friends because it was easier than trying to figure it all out and fight to keep friends
-- now making new friends at new job!
Life got much better / TN got better - but still get PTSD when teeny little shocks visit weekly
But I had to find the new me. I know what to spend my time on - and what I won't put up with -- I guess it did make me stronger.
- We are only 12 in 100,000 - so we gotta stick together!
I am in the UK too but in Scotlland, Sorry for the time it is taking to get results. I also have bilateral pain and recently diagnosed with TN. Have been getting intermittant pains for years but only saw doc 6 weeks ago who had me admited to hospital with pain. Hospital arranged neuro appointment for following week and MRI arranged for 2 weeks later. Have to see neuro again on 18th for results of MRI. Have been prescribed Tegretol meantime which helps pain but does nothing for numb feeling on face. Neuro diagnosed TN because tegretol is controlling symptoms somewhat. Coping at present. I think you should go back to G.P. or go to A/E if you are still in severe pain.
How much tegretol do you take and what times and does it make you nauseas?
feafee said:
I only had 3 days of shocks last year, so I did not expect Tegretol/Carbamazipine to help with the burning pain. I was tried on anti-depressants which helped some but not nearly enough. A month ago I started on Tegretol and within 2 weeks my pain level had dropped to a very tolerable level. It has been a world of difference. Hold out hope! There are so many different medications and tons of combinations. It will probably take a few tries to find the ones that work best for you.
Hello,
I’m so sorry you are going thru so much. I went to a chiropractor before my pain started on the left upper jaw. I believe I have ATN or TN2. I have had only one doctor tell me their is a good chance its TMJ and the muscles in that area causing it. But the strange thing is it defiantly feels like my tooth. I already pulled one tooth and root canaled the one next to it also but I’m still in pain with no results. Do you think TMJ can really make you swear its your teeth? I only ask because non of the nerve treatments like gabapentin and ganglion nerve block have given me pain relief so what is left. I have a hard time believing it could be something as simple as TMJ.
It’s my understanding that TMJ is higher up into the joint and/or long the jaw, it’s not focused in your teeth. ATN, however, can absolutely make you think it’s your teeth. I’ve even had ATN give me the phantom feeling that my teeth are loose in the socket.
For ATN it’s also my understanding from my neuro that the medication Tripleptal should help. It may not resolve the issue but when I first started with all of this she told me to take Tripleptal and if I didn’t seem some reduction in pain with the first dose I was to call her because ATN “always” responds at least a little to that medication. It might be worth trying it just to see what happens, it could help rule out or rule in things.
As some of the others have said, tegretol really does it for me. I take 200mg. four times a day, sometimes 3 times a day. At first it really did give me nausea, but I halved the dosages, always took them with food, and it helped. Now I have little trouble with nausea. My blood work has never shown a proble m. I always wait 4 hrs. between dosages.
I have had this disorder for a long time, 9 years, and for me, it changes according to weather, stress, who knows what. It gets worse, and yes, it does sometimes get better. I have even been pain-free for as long as 9 months at a time, and then have the pain return with a vengeance.
Currently I am trying care by a chiropractor. It seems to help. The upper spine can get messed up, and then that causes pressure on the brain, and TN is worse.
I started having very infrequent shots of pain in my 40"s, then getting meds. and been diagnosed now for 9 years. I have never gotten to a point where I have said,"O.K., I am of the age now, where I should have this. I am an old person now, so it is right. NO!
Nobody should have this at any age. It is horrible, and it is not normal, and it is never O.K.
Hang in there, we are here for you. Don't give up.