Trigeminal Neuralgia - Hi, I'm a Newbie
 

I just found this site tonight, so still have lots of exploring to do. I was diagnosed with TN in March, 2008. It started as a stabbing pain in my forhead back in January, and then the next time was like my eye was plugged into an electrical outlet. Boy, did I scream. We went to Emerg. and I was told it was a sinus infection and he gave me an antibiotic. Well, it happened a few more times but I thought that the pills just hadn't taken effect yet so I didn't do anything. Then, I was bending over wiping my dogs feet and the electric shock ran right through my left eye. I screamed in pain (my poor hubby). So, back to Emerg. we went. This time, it was a different doctor. Well, he looked in my eye and "couldn't see anything". I told him it was like an electric shock behind my eye. He sent me for a sinus x-ray, which came back clear. He said, "I don't know what it is, go see your family doctor, this is for emergencies." Well, it continued a few more times, once at work. Then in the shower when the water hit my head. I took a cab and went back to Emerg. hoping to get a different dr. - no luck. This time, he quickly checked my eye again. even though I told him it felt like it was an electric shock in my brain. He didn't listen to me. He couldn't see anything, so set me up for an appointment with an Opthamalogist who was a 5 hour drive away. When it happened again at home, my hubby and I packed our bags and drove 8 hrs to Calgary. Once admitted in E.R., the dr. touched my forehead and set off a huge attack. She told me that I would be going for a CT scan. Finally, I was getting some help. When I came back, a Neurologist was waiting for me. When he examined me, it set off another attack, so then I was told I would be having an MRI. After a tumour and MS were ruled out, I was told I had TN. Finally, I knew what it was. :)

I only have it in the eye/forehead area and am not finding much information for it. Even Striking Back only barely mentions it. Everyone's story that I've read so far in other communities seems to have it in the cheek or jaw area. I am taking 400 Tegretol, plus 1,000 Tegretol CR, plus 450 Lyricas. I feel like a walking Zombie. Can anyone recommend something that isn't so potent? I miss my brain! I have been on short term disability and am awaiting approval for LTD. Does anyone else here have eye/forehead TN? I hear that MVD is not very helpful in my case.

I'd love to hear any advice you can give me. My GP is trying to help me but has only ever seen one case of TN before and that patient only took 1 pill a day. I am going back to see my Neurologist next week. I heard about a new drug call Trileptal which isn't supposed to have as many side effects? Sorry, for going on so long. I'm new to this......Bonnie :o

Hi Bonnie
 

It's unfortunate it took so long to diagnose your TN. I had my first attached in April 2003. I first went to my dentist, who found nothing wrong... I then went to my doctor who immediately diagnosed it - I consider myself very lucky!

It took a few years before I was put on Tegretol. This literally saved my life. It felt as though it was starting to wear off, so I opted for surgery. I had the balloon compression - they insert a hollow needle in your cheek, insert a balloon, inflate the balloon and have it pressed against the nerve for a minute or more.

This was done in March 2008 and I have been pain-free since - no meds or anything. I have a very slight numbness above my lip, on the right-hand side, of course, but that is a small price to pay.

There is a 40% chance that the pain will return. If it does, I will go back into the hospital (day surgery) and have the same procedure repeated.

Good luck to you.

JudyM
Ottawa

sundog welcome and we are glad you found your way here to Neurotalk. sorry to hear that you have t.n :hug: I would first reccomend looking through the stickies at the top of this forum as there is plenty of great info to read and web sites to visit. after i will try to find a link to the t.n.a. in your area
cannada has one I am sure of it and will post the link at bottom of this post.
Hwo long have you been on those meds? your bodu has to adjust and it needs to get in system. also you will find like so many of us that the docotrs will probly up your meds and then you will be switched to a whole diffrent medication after awhile cus body builds up and become imune to it, med wont work as well as it did at the start of taking it. and any med really seems to steal part of your brain, energy. that is a down side. I am sorry you are dealing with that. but your not alone. I would most surely see a neuro and a pain docotr . your g.p. isnt prepared for t.n. or how to treat it. most genral docotrs here in U.S.A. arent either. most of us see a neuro and or a pain managment doctor. I must reccomend the book "striking back" it is a bible for t.n. folks and has a God send of info and tips . you can find how to order it at the top in the stickies info here.
I see you have learned what one or two of your triggers may be.... water hitting your head, also the preasure when you were bending over..it changed the blood flow..those are both common triggers. NOT everyone has the same triggers. and what works for one may not work for another each case is diffrent. if you ever need to talk or vent or have any questions..you can click on my name and send me a message private.I will help any way i can..of corse please do keep posting here. as the info and sharing helps many others. now I am off to find that link to add to bottom here .
Low pain at you :hug::hug:
PEACE
BMW
Trigeminal Neuralgia Association of Canada
http://www.tnac.org/

where to get "striking back" book and others
https://www.tna-support.org/storefront/products.asp

also the tips for new comers at top of page here inT.N. forum here has list of comon drug used to controll t.n. pain

Trigeminal Neuralgia
 

Thanks for your helpful reply. I have the book Striking Back and have joined both the Canadian and American TNA's. I have TN eye/forehead only which I guess is harder to treat. I am in the 1 percentile according to the stats in Striking Back and there is not very much information about it.

I was wondering if anyone else here has also been diagnosed with eye/forehead only. I take 1200 mg of Tegretol and 450 mg of Lyrica a day. I don't think the Lyrica does anything but make me a walking zombie and I have zero short term memory skills these days. Is there anything better out there? Of course my insurance co. is trying to say I'm ok to return to work. I work 10 hr. days, plus spend another 4 hrs commuting on the bus. (I work 2 hrs. north of town) Can you believe it?

Are there any drugs I can takr and actually get my brain back? Bonnie

I cant help with medications for t.n. I am allergic to anti seizure meds and all the others that usualy help didnt do anything in the way of controlling my pain. neurotin made me kinda suicidal when I was on it. I have A.D. and have been off medication for over well well four years now due to being able to have a neuro stimulator implanted for my pain. I am NOT pain free but it has given me back a good part of my life. I hope others will stop in and share what helps them the most. Low pain wishes at you.:hug::hug:
PEACE
BMW

This sounds ALL too familiar. Exactly what Emerg/Doctors did for me in the beginning. "Oh, you probably have sinusitis, here's some antibiotics". Ugh.

Welcome to NeuroTalk, you found an excellent place to share and communicate with others :hug:

Trigeminal Neuralgia
 

Hi Dmplaura,
Thanks for your comments. Can you tell me what you have taken, and what is working the best? I just saw my Neurologist this morning and he is changing my meds. again. I am staying on the Tegretol but he is replacing the Lyrica with Topamax. Has anyone taken this drug? He is also referring me to a neurosurgeon, which is a little scarey.

Thanks.....Bonnie

Bonnie, I'm only taking my Multiple Sclerosis drug (Copaxone injections) and Clonazepam (an anti anxiety medication) for my burning searing pain I have, and my case of headaches. I have been VERY fortunate to not have a repeat of the TN attacks I experienced.

I tried 2 anti convulsants and I had side effects on both (Carbamazepine and Neurontin). I was on Topamax for an extremely short period of time, because I was then diagnosed with MS and on IV steroids, so I quite the Topamax at that time. I asked my GP about trying it again, and based on my side effects on the other anti convulsants, she vetoed Topamax.

TN
 

Hi Bonnei, I was diagonised with glossopharygneal neuralgia (ear and throat)in march of 2008. Herbs stopped the pain but six months it came back. I found a book "What time Tuesday" changed my life. Go on line and check it out at whattimetuesday.com
Mine is now gone for good and also another person I know had TN and he is pain free after first visit.
It saved my life.No pain after the first visit and no pain since. Even my feet quit hurting after years of pain.
The doctor I am going to is a upper cervical chiropractor. I wouldn't of believed it if I hadn't experienced it for myself. His name is DR. JL Rowe chiroprator in Oklahoma City. Where do you live?
Myrna

pain in the eyes
 

hello Bonnie,

I developed severe eye pain in 2005. I was told it was all in my head and wasn't taken seriously by any doctors. When I became severely suicidal my doctor put me in the hospital and I was seen by a neurologist. I've been on gabapentin, cymbalta, tramadol, and lorazepam for 6 years now. My pain has changed to more of a constant, background pain with times (sometimes days) of more severe pain. At the same time the eye pain started I also developed severe dry eye. I have to lay down every afternoon for at least 2 hours so my corneas don't get dry spots on them.

My mom developed classic TN this summer. I got her right into a neurologist who put her on Trileptal (Oxcarbazepine). Within 2 days her pain was gone.