Trigeminal Neuralgia. do l post here? At my wits end.

M

myshit

New member
Try the trigemnial neuralgia association at endthepain.org they helped me w/ my MVD surgery and are a wealth of knowledge. Please get in contact w/ them. They have support groups for TN.
 
Hi
I just today found Health Boards message board. I have been wanting to share my experience with Trigeminal Neuralgia for a long time. I suffered for 4 years before finding out just what I had. I have read articles that say it is the worst pain any one could experience-I agree!. They put me on Tegretol
and it did nothing for me at all. The Dr. said I had a very severe case.
Finally I gave in and had surgery, it gave me my life back. There are alot of possible side effects from the surgery, I was lucky. It is something to think about

ell123
 
Hi,

I'm at my wits end and have been scouring the internet looking for anything I can find on TN.

I have had random electric shock stabbing pains for about a year, but with no other symptoms. Plus last year, my jaw decided to lock up and ache for about a week, where I could hardly speak or eat.

Then two weeks ago, I started having highly sensitive skin on my scalp and forehead and down the right hand side of my face accompanied by the occasional stabbing pain in my head or cheek bone, burning skin, aching lower jaw, painful and sensitive teeth and the pain got so intense that I felt like I was totally losing the plot.

Went to the doc (i'm in the UK) last week and he said straight away it was Neuralgia (but didn't specify TN - although everythin I have read points to it?) he prescribed Tramadol (Zydol) which when I am in pain don't seem to even touch it. I have to take them straight away when I wake and then top up just to keep the pain at bay, but then i'm just totally spaced out or knocked out all day. I would cry if it wasn't so damn painful when the tears run down my cheeks - pathetic I know

I am going back to the doc tomorrow to request an MRI and go privately and also a change of meds? I can't go on like this, I haven't eaten for days and I just feel so alone.

If anyone can give me any advice, or what to ask my doc, or just tell me whether i am barking up the wrong tree, please please please do so. Any help would be appreciated.

Primrose xx
 
I dont have trigeminal neuralgia but my mother does.Tramadol is pretty weak-it wont touch severe pain.You should try tegretol if you havent tried it.It is for nerve pain.I hope it helps you.
 
i think the MRI really sounds like your best bet at this point since it would appear that 'something' just is affecting nerves in your face. this could be stemming from the head or even the c spine since some cranial nerves DO run down from the head and into the upper spine then loop back up again. if i can remember right, i do think that the trigeminal IS one of those that do go down into that c spine then up again. either way,just getting that MRI done,with contrast(contrast just really highlights certain structures much better than without it) of your head and c spine may show the nerve affectation. in order to just simply have the type of symptoms you are,the most likely cause would be the nerve issue,that i do think you are right about. it could be impinged or compressed by something in the head/face or c spine. but that MRI should be able to give you an idea as to what is the main cause.

the above poster is right about the anti siezure meds being the best to try and reduce or control any level of nerve pain. they are usually the first choice for any type of actual nerve pain. they simply calm down over excited or inflammed nerves. meds like tegretol or neurontin or even lyrica may offer you much better relief,at least til you can find out what is actually causing this and get real treatment for whatever is creating it.

hopefully something will show upon MRI and it can finally be relieved for you. i know how horrid facial nerve pain can be. mine is from spinal cord damage. please keep us posted. good luck, FB
 
I don't know if there are any surgeons in the UK who do this but my sister had TN and had successful vascular decompression surgery. You might want to research that. It was invented by a doctor at U of Pittsburgh here and she went there for the surgery. I don't know if they have a Trigeminal Neuralgia society or association in the UK but you could research that as well. Perhaps they could direct you to someone who can help.
 
Sure sounds like TN. Have MRI done and possibly CT scan. It's hard to diagnose; took me over a year and the help of a very specialized neuro-opthamalogist. 4 neurologists (5 MRI's) couldn't find anything. Try to find a neuro-opthamologist.
 
I hope you received some answers Primrose. I was recently diagnosed with trigeminal neuralgia and I did have an MRI, which was normal. I read that you have to get a special kind of MRI to show compression on the nerve ad even that is hard to detect. I had my MRI before I saw the neurologist and received the TN diagnosis. I tried tegretol and it hurt my tummy since I have Crohn's disease. Now I am 6 days in to taking neurontin and it seems to be helping, so we will see what happens. I get horrible shocks of pain to my face near my ear and constant pain. I also have another diagnosed neuropathy in my urinary/private area that hopefully will respond to the neurontin as well. When the TN acts up really bad, even 2 percocets do not even touch the pain. The neuro said only anti-convulsant (anti-seizure) meds will work on that pain. I now believe him!!!! At least my Crohn's is not flaring, it just seems like one health problem after the next for me. I hope u got some help! HUGS
 
I to tn also crohns and other problems. It started over 20 years
ago felt like a toothace trob had tooth pulled pain still there.
Got the dentist to check it to see if tooth was left. By pulling the tooth i reallyl sat it off. Electric like shocks deep down in the ear and beside the ear could not find anything. Then a dentist
said it was tmj had my jaw broke and wired because he saiid it was from overbite went threw that for nothing did not work. Saw
a nero doc took one look said tn after all these years suffring still in pain. Taken other drugs on nurontin now met a woman at clinic she had the surgery did not help and there is no promise it will work. My doc will not give me meds he said pain meds does nothing for a nerve so i suffer. Also i cannot take alot of pain meds alergic. Sometimes i cry pain i do the best i can i put heat on it and live with it to the pain stops normally4 days at a time. Give me your syptoms all. What kind of pain or meds help u. Sometimes i want to see a new doc for he has not helped me in 4 yrs going. Ttake elavil neurontin baclofen, tegratol felxeril nothing helps. Keep your head and ear wrapped if your home and it's cool are out wind, near a fan and keep heating pad on it to it passes. no the pain it hell
 
roxeypuppers, were you able to find a good combination for the CD and TN. I also have crohns and TN. What do you take? I am on imuran, baclofen and elavil. Having a hard time with the weight gain. I'm back to the weight like I was on prednisone.
Thanks
 
My mom has TN, she is 74 and was diagnosed ~9 years ago after a year of suffering and misdianosis. She has subsequently undergone 3 radiofrequency ablations the last one being apprx. 4 years ago. The TN has returned again and for various reasons I don't want to get into we have turned to another Neurosurgeon. He is suggesting Stereotactic Radiosurgery. Has anyone had this done for their TN? Can you comment, good or bad, on it?
 
Also premrose go to web md to look up about it
good luck. Mine has gotton worse. More bad shocks to the head bad headaches, tingles around mouth face and chin. Sometimes the shocks to the head dow the head and face scares me because i do not no if it could be a stroke and i would not no the signs. Head sometimes sore to the touch
an even the eyes has began to spasm.get back with good luck
 
Please contact the TN Clinic at Presbyterian Hospital, University of Pittsburgh. My sister went there for her surgery (vascular decompression). It was very successful. At the time they had over 800 people listed in their clinic. About 300 were candidates for the surgery. The others weren't because of various other health issues, remedies they had tried that would render the surgery non-successful, etc. Please go see them or someone they recommend in your area before going thru any other treatments. My sister volunteers now with the TN Association and works medical conventions, etc that come to New Orleans where she lives. The lack of proper information and medical training of doctors is astounding. The TN Association can also direct you to an association approved doctor near you.

I just did some checking and the organization has changed its name to the Facial Pain Association. They list 6 doctors in Winston-Salem and 1 in Durham.
 
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