Trigeminal Neuralgia (again!)

[sarahw244]

Looks like my TN is acting up again.  Does anyone else here have problems with this?  If so, how do you deal with it?  Last year at this time when I was diagnosed with it, the doc put me on carbamazepine (Tegretol) which really did help.  Once all my refill were out, about three months later, the TN was gone.  Probably should contact the doc and ask for more medication?  Is there anything else that can be done long-term that anyone knows about?

I also have a question about fatigue.  It is horrible!!!!  I am not completely fatigued 100% of the time, but enough that I seem to have more bad days than good.  Some days, I feel like I could just go to sleep and never wake up!  Does anyone else deal with this, and if so, any advice as to what I can do about this?  Is there anything OTC or herbal I can take that will help?

Thanks a lot for any advice with these situations!

Sarah

[jibjen]

Hi Sarah,

Didi you call your doc????


Jibs

[MrsAristotle]

Oh yes I remember it well the pain from hell.

I have had this about 3 times I suppose.

The first thing to do though is check you have no dental cause even if your teeth look good you can have things going on your not aware of, although I have to say your pain sounds classic TM.

I had the worse worse attack when my mother in law died the stress brought it on. It was so bad i did go to the dentist to check but all was ok....so i rang my doctor and she said it was neuralgia again and to take my diazepam which WORKED thank god.

The one thing i did realise though that I was trying to massage the pain and it made it worse lol....i couldnt eat, chew or swallow the pain was terrible, into my jaw up my face into my eye across my ear ARRRRRRGGGGGHHHHHHH.

If you can get medication then do so dont suffer with this it is miserable.

As to the fatigue. Its funny because i dont have this all consuming feeling sleepy fatigue until about 6pm....but I do get fatigue as in like come 3pm my battery is winding down and everything is just an effort to do.........

All you can do really is pace yourself.

and watch your diet make sure you get lots of good green stuff and iron laden food in your diet which does help.

but really listen to your body if it is moaning then let it rest lol.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001751/

The above explains TM.

I hate TM lol bad TM.....its the only time recently that i have actually had to resort to paracetamol....

Big hugs. Maria

[illinwithoutacause]

dear sarah,

i haven't had TN diagnosed, but i have been having some aching in my back left molars on the top, along with my cheekbone.

i moved my neurologist appointment up to this coming friday so we'll see what she has to say about it.

i hope you feel better soon!

best wishes,
binx

[sarahw244]

No, my neck doesn't stiffen up and doesn't seem to be involved with any tension.  I never had a migraine before with this pain, but I remember last year I would get a headache when the pain was really bad and widespread over my face.  I am just wondering (out loud and to myself : ) if once a person has it, if it ever goes away?  I guess my doc never fully explained to me what I was to expect.  She was just happy that the medication was working.  

After reading your description of the dentist office thing, I just remembered... When I got it the first time, I thought there was something wrong with my teeth.  It wasn't my teeth, exactly, that hurt.  It was more like the gums or something just below the gums along the lower jaw.  I thought I had something wrong with my teeth, i.e. a cavity or something.  

Anyways, it sounds like that is what you have also.  I don't, however, have any numbness now, although I remember having some when I first had it.  It sounds like yours is more permanent or chronic, though.

Again, thanks for your quick response!  You guys are great here!

Sarah

[jibjen]

I'm sorry...I do have pain in my low jaw high cheek which will pierce for a short time and go...I have a numb spot on upper lip and lower chim that seems to be constant...NO MIGRAINES!!!!!  I describe it like coming out of dentist office and the novicaine wears off....and it's tingly and still a little numbish

I'm sorry it's back for you.....Does your neck stiffen up???just curious if it is tension or involved with it...

Jibs

[sarahw244]

Thanks for your reply.  I guess there was no "method" to the way she dx'd me.  She based it off my symptoms mostly and her exam.  When it's really bad, I can't even open my mouth and this was the case when I saw her.  She started me on the Tegretol, which started working within about 2-3 days.  It was amazing once it kicked in.

Mine feels like an electric shock almost.  Sort of.  Maybe more of a big needle or something really fine and sharp stabbing me in the jaw between the top and bottom part of the jaw.  When it's really bad, it "shoots" around the whole right side of my face.  Ugghhh!!

I guess I'll just have to suck it up and call her in the morning.  I am getting so sick of having to call her.  I feel like I am always either at the doctor or calling one  : /

Sarah

[jibjen]

Hi Sarah,

I can not say TN....BUT I am currently and have been suffering from facial pain with a side on numb spots since December.....My last follow up a week ago he upped my dose of Topomax...to see if it helps and if not he is talking Cymbalta or Lyrica...Again he did not say TN..He did MRI and said it was normal but I have lesions...(that's another story) He called it at last appt. neuropathic pain????

How was your TN dx......My dentist ruled out anything dental and jaw causing it....It does hurt and numbness is annoying for me...

Jibs