I just googled it, Dotsie. I pray that it is not TN as well. Please keep us updated.

I have TN. Have had it for years. I'm happy to report that it has gotten much better and less painful over time, but I went thru at least 10 years of on and off misery. I hope you don't go thru what I went thru. I had teeth pulled, had sinus surgery, wore a night guard, you name it. I even had gamma knife surgery (supposed to kill the nerve that was causing the pain, it's a form of brain surgery). Believe it or not for some reason it got way better after I had a hysterectomy! But before that they had me try all kinds of drugs, including a blood pressure med and an antidepressant. I had my hysterectomy in 2001, the TN got way better after that (one doc said it was the pain had been due to hormonal flucuations -- they called it hormonal migraines) and that's why they hysterectomy helped (had the hyst for other reasons -- typical female problems). I went off the antidepressants after that, and now only take a low dose of a blood pressure med, which seems to keep me out of that TN pain most of the time, unless I'm under a lot of pressure or stress. I'll be glad to help you in any way I can. Please feel free to email me or whatever. I know TN is misery, from long experience with it, and pray that the steps you're taking help you out and this is a short-lived episode of the problem. Believe me, I've been there and done that.

Dotsie
WOW
I have after several doctor appointments been diagnosd with trigeminal neuralgia.This came after my reoccuring shingles and the unwell time six weeks ago.
I considered a dental check up but have recently had my check..this has been the most awful time..eye issue..ear particularly.But the headache on one part of my head is the worst in my whole life..
INTERESTINGLY..I met a friend from my home street and school and she has had the same.although close we dont see each other that often..as she was discussing her episode it sounded so like my own that I really wondered about our childhood ailments in particular chickenpox..and our immunity.
I visit my naturopath later this month and will see what he suggests.meantime I have one suppliment for cold sore prevention and rest well.
Take care and like me get a second opinion..my family have been solid in their help...thanks be for that.

Interesting to hear others here have had/have this.

CQ, gracious, have you been through it or what? Please don't tell me 10 years. It's been a week and I'm about out of my mind. Is/was it on one side of your face? And the pain comes from out of nowhere? The problem now is that I'm not getting as much relief as I first did. It really came and went, and I felt fine when I wasn't having an episode. Now there seems to be a dull ache all the time. Sometimes in my gums, sometimes my temple, or left side of my nose; feeling like a sinus infection. I already took a Z pack just in case it was infection, but I'm convinced it's TN after reading the article Ross printed offline. I haven't read anything else about it because I don't want to scare myself. I read that people have had tooth extractions unnecessarily thinking it was a tooth problem. Egads!

CQ, so you still have it a bit?

MA, what are you doing about it now? Are you walking around with this pain?

I have an appt with my primary care physician this morning. I'm hoping he's treated this before and will prescribe, but he may send me to a neurologist, or for an MRI. Life goes on...

CQ, the information I have from online mentions your surgery. Holy Moly. I can't believe it didn't work. How many doctors have you seen for this?

Fortunately, I think Ross is onto something before I had to endure too many visits, or tooth extractions, etc. TIme will tell.

The sad thing is that it seems to have gotten worse the last few days. Before, I could get total relief. Now there seems to be a dull ache/throb constantly. It's weird, but I think wearing glasses makes it worse. I wear glasses when I work online. Yikes.

MA, hope you're having a good day!

This started as throat virus..then got complicated.seven weeks on..I am told only time will help and do feel somewhat better only to have "WHAM" hit me.Remaining happy and loved..which matters.
I could get a model head and discect saying not here.. not here..then show you the segments that hurt.My eye would not cry...then when it did it was like Niagra..
The tree nerves that are involved radiate...the lower one has improved..I was drooling..yuk...but the ear and eye area are my worst.
do take care that the dentist knows all about the problem.

seems when my virus hits the trigeminal nerve it was off to painland for me.
My friend got antiviral in time.(within a time frame from the rash on her neck)yet was sent immediatly to neurology.the Doctors there gave steroids.
.My case was too far on track to gain from the steroids..I have very strong pain relief...managing with less today..








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It was many years ago that this started for me -- probably when I was between 35 and 45 -- I may not have all my facts straight and hopefully treatment and diagnosis has gotten better since then. I started with my dentist. He couldn't find anything wrong and eventually gave me a bite splint to wear -- first at night but then I didn't get much improvement and I had to wear it during the day too (mine fit inside my lower teeth and I could talk with it I just couldn't eat with it -- it looked a lot like those Invisalign braces but was fit on the inside of my lower teeth). That dentist eventually diagnosed me with TMJ and sent me to a specialist for that. I went to see him periodically and he would adjust the bite splint (regrinding surfaces and whatever) and also gave me pain meds (I lived on darvasette at the time) and muscle relaxers to help keep me from grinding my teeth when I slept. Grinding at night is a vicious cycle..........you grind your teeth, it causes pain, which causes you to grind your teeth more,which causes more pain, and so on. Yes there were times I wanted to put a gun to my head and pull the trigger. I actually went so far as to get the gun out of the cabinet one day but my husband had hidden the bullets and came home to find me in a heap on the floor crying because I just didn't want to live with the pain anymore. Eventually I was sent to a ENT who told me the whole problem was my sinuses and talked me into sinus surgery. Well, my sinus headaches got better (that was NOT a pleasant surgery believe me) but my TN/TMJ pain remained the same. I saw a chiropracter. I was in so much pain after she worked on me I never went back. I saw a neurologist who had me try several meds, mostly anti-spasm meds. All had awful side effects, I had an allergic reaction to some. Eventually I was told there was nothing else that could be done and they sent me to a pain clinic. I finally found some help there. They actually gave me a test where they injected morphine directly into the trigeminal nerve area. Didn't touch the pain. They kept adding more and asking "are you still in pain?" and I'd just nod my head with tears rolling down my face. They put me on an antidepressant which was also used for nerve pain -- Elavil (it was about all they had back then). I gained weight like crazy on it, but it seemed to help the pain, or at least helped me live with it. Then one of my docs saw an article where TN patients where helped by blood pressure meds. They put me on Verapamil along with the Elavil. Finally, things started getting better, but not great. That's when they scheduled the Gamma knife surgery. They said there'd be no after effects -- ha!! for weeks afterwards I felt like someone was driving nails into the top of my head. They'd call from the hospital wanting to know if I'd had any improvement and were always surprised when I said no. Gamma knife can take from 6 months to 2 years to have results. In my case, it took 2 years. They try to kill the pain-causing nerve, so it depends on how it heals, or something like that. I lived with a lot of pain all during most of those years that all this went on. Doctors visits were endless. Anyway, I had to have a hysterectomy in Jan 2001. A couple of weeks into recovery from that, I realized, the pain in my jaw/ear area was much much better than it used to be. Well I was so scared that it was going to return, that I was afraid to quit taking the Elavil or the Verapamil. I waited a year and said ok........I didn't like the side effects of the Elavil so my doc said it was ok to wean myself off it, which I did, and that went fine, I didn't need it. When I tried going off the Verapamil completely, I started having some pain again, so we ended up just cutting that dose in half, and I still take it to this day.
It's been almost 9 years since my hysterectomy. Most of the time I'm fine. During times of extreme stress (when my dog died last week and I cried for 24 hours straight for example while I'm having an allergic reaction to the stitches used in my foot for bunion surgery and it's been 2 months and it's not healing and so on) it flares up, but I know it's only temporary and if I can zap it with 600 mg Advil before it gets bad, and chill out for a while (beach days do wonders) it goes away. The majority of the time, I'm fine. I can feel when it's coming on, and I know what to do when it's coming, but sometimes, nothing much helps and I just have to ride it out for a few days.

There used to be a support group for TN sufferers, The Trigeminal Neuralgia association. I'll look and see if I can find a link for you. I used to get their newsletter, but I found for some reason I really couldn't relate so I stopped getting it..........everybody's pain and results were different and it just didn't click for me if you know what I mean, but it might help you out.

Don't give up. Many times I wanted to, but things did get better (although in my case it took a long long long time, thank God for my husband he was my rock during all that time) and while I wouldn't wish what I went thru on anyone, I can only tell you that you have to keep trying til you find what works for you.

Oh one final thing -- when I got off the Elavil I dropped 30 lbs and have never gained it back. And yes I went to the gym thru all the stuff I mentioned above, and traveled with my husband, and tried to keep going the best as I could...........it helped to take my mind off the pain. So do what you can, but if you're in too much pain to do whatever, that's ok too. You have to deal with it in whatever way works for you, but don't give up on trying to find help.

With all I wrote above, you'd think I'd covered it, but I forgot a few things.

yes Dotsie the pain was always only on the left side of my face. My ear, my gums, my sinuses, my teeth, the left side of my neck (which is muscle spasm caused my contracting because of being in constant pain).

I don't want to be discouraging, but there is no easy answer to TN pain. It may take some time to find what works for you. Let us know how it went with your appt this morning. I hate to hear that you're dealing with this. I know firsthand how awful it can be. I'll be interested in hearing what your primary care physician had to say or if he prescribed anything.

BTW I have worn glasses since 3rd grade -- never could make the switch to contacts, although I tried -- and wouldn't be surprised if there's a connection.

Here's the link to the TN Association:

http://www.fpa-support.org/

Oh my God. Ladies this is terrible. I never even knew of this illness. Now I know it can trigger shingles, which I think was in my mother's case as well. But she doesn't have TN anymore.

Dotsie, thank you for posting that list about how to cope with grinding teeth. There are some very good suggestions, and I am following them.
I've been thinking about you alot today. How are you?