So I'm 24 and since Friday have been in agony, sunday the doctor said it was trigeminal neuralgia, after reading info on it, as I had never heard of it, its left me pretty depressed, I can't face doing any house hold chores, I've literally just lay on sofa, with my scarf wrapped round my head, feel like little red ridding hood! Not good when I have a 4 And 2 year old to look after, is there any tips on getting through this? I'll be honest early hours Sunday when it felt like my face was being stabbed with electric rods, I considerd taking all the tramadol I had, I was prepared to take that risk just to feel no pain, anyway I didn't the thought of the kids stopped me, I'm taking that anti convulseant tablets and so far provides some relive, although I feel rotten for taking them, is there any tips for getting through this? Since Friday its as though its ruled my life, would rather go through labour than this, never ever known a pain like this.
Hi, I totally understand! I have 5 year old and 3 year old and no family around me. Just my husband who is working all the time. I have been diagnosed with this awful disease 2 months ago, after many visits at the dentist. I have also lost 2 teeth because of that. Everyone thought it's my teeth until I got fed up and went to see my GP. She said its TN. They have started me on Tegretol, didn't help now I am on Gabapentin 600mg 3 times a day and it worked within a week. But now I feel like it's not me anymore. I keep wearing a scarf wrapped around my head because I am so scared. I am going back to work next week, aftter weeks off sick, I am so petrified! TN has ruled my life and still is! I wanted to kill myself that's how bad and strong my electric shocks in my face were. Don't worry, I promise the pain will eventually go! I have been referred to neurologist 4 weeks ago and still waiting!
Oooh bless you, that's so similar to me, i was meant to have a tooth out or root canal i went for the extraction but when i was meant to go i had bad tonsillitis, so i never had it out, i understand completely the night it was at its worst i took 30 tramadol and it never touched the pain next day i was diagnosed, i was on tegretol, bur then went onto 500mg gabapentin 3 times a day, tramadol and amitriptiline at night if your in fb there's a good group called trigeminal neuralgia uk group i recently found loads of friendly people on there 
i too were a scarf round me face feel stupid but too scared not to were it hope your okay x
Hi, have just been diagnosed with Trigeminal Neuralgia and am in constant pain, I cannot eat anything
without my cheek feeling like it is on fire and it makes me either cry out or scream and the pain from the
right hand side of my skull,ear,cheek and neck constantly throbbing has been going on since 23rd Dec
when it felt like I had lock jaw, my doctor has subscribed Gabapentin 10mg and is slowly increasing it
each week now, but I am getting no pain relief at all, I also take Morphine, Zomorph, Baclofen,Arthrotec
due to spinal problems and was also on Amitriptyline but was taken off that. I am very confused as my
Doctor has told me nothing about this problem apart from what I have been given and although I have
trawled the internet can find nothing about what help there is, it seems like there is very little known as to how this is treated. I am already under the pain clinic for my spinal problem and constant pain with that
as it affects the nerve system already down my right side and now this. Is there anybody out there
that can give me any information regarding this problem I would be so grateful.
That sounds really painful, hope you get it sorted soon. Just thought I would share a story about a friend of mine. She was diagnosed initially with Trigeminal Neuralgia and given very strong medication but it did not resolve the problem. Her symptoms were not typical in that stroking of the face and brushing her teeth did not bring on the pain. In the end it was found that she had a tooth abscess which the Dentist had missed, so for anyone else out there if you find you are getting jaw pain but the symptoms are not typical make sure you have your teeth checked, and not all abscesses show up on a tooth x-ray unfortunately!
I have TN for 16 years. Last april I had a balloon compression and for 9 glorious months my pain was gone. Sadly this past week it has come back. I will if I can have the balloon treatment again. 9 months of free
pain will be worth it. After 16
years of trying different drugs (which don't work).
I was very interested in the result for trying marijuana ,but where do you get it from ?
I, too, was put on these drugs and I felt so awful. Warning...neurologists tend to want you to stay on drugs ( it is not that way in other countries unless you want to try drugs first. They seem to either not work for long or the side effects are too awful. I couldn't function at all. The neurologist was not helpful in getting me off the drugs, so researched the surgery options. There are about five or six. I started visiting a few docs who had various offerings until I found THE doc in Portland, OR that is an expert in TN. He has done thousands of TN surgeries. We opted for radio frequency thermal surgery because I might have MS. If I didn't he would have done the decompression surgery. I am off the drugs tho it took a week or two to wean off, have no more TN pain and am thrilled!
Do the research and find the surgery that will work for you and get off those stupid drugs unless, of course, you are satisfied with them. They say you want a surgeon who has done a lot of these surgeries. Who really know what they are doing! Good luck!
Any chance you'd share the doctor's name?
Bill, in Atlanta
I, too, would be interested in the name of the doctor, or at least his/her hospital there he/she practices. Thanks so much! Don
Dr Kim Burchiel in the neurological surgery dept. at OHSU. I had to have my regular doc refer me (that is require at OHSU). But he has done thousands of these surgeries.
Dr. Kim Burchiel at OHSU in Oregon. He is a neurological surgeon at Oregon Health Sciences University. You need a referral to go. I got one from my regular doc. He was a good find.
Thank you so very much! -Donna
My dad has TN and it's become very severe in the last weeks with spikes every other minute.
I just started him on vaporizer Marijuana and will report back with the results. Hope it helps... We're looking into surgery. He has had gamma knife surgery and another surgery with a plastic sheet between his nerve and vessel but nothing has worked yet.
I had TN for 14 years. I am 71 years old. In April 2013 I had a balloon compression. I was an outpatient for this proceedure.I have been free of pain for 16 months and its wonderfull. I was told it could last for 3 months or 3 years, so Im doing ok at the moment. Also if it returns I can have the proceedure done again. I was refered to tthe pain clinic for this .I live in England. I can now hold my head under the shower which to me now is wonderful. If it comes back (perish the thought) I will definately have it done again, Ive got my life back.
Good luck with whatever decission you make.
Patricia
Hi Patricia,
Finally good news! Thanks! I am 63 and have had it for about 10 years but only got horrible a year ago. I had a radiofrequency surgery (they burn the nerve) which worked for 7 months, then the doc did the surgery again but burned the nerve more. So far so good. I love not having the pain and having my life back too. I know TN can come back but they just do the surgery again. This is our life now with moments here and there of pain but mostly we are painfree! Thanks for chiming in and letting us know your good news. I am sad about all the bad news I have been reading on here..feeling hopeless. It is important that we here the bood news items too!
May we all find freedom from pain!
What is vaporizer marijuana? I am going to a marijuana clinic here to get help for when the pain comes back. I hate the drugs the docs offer soooooo much. Need an alternative solution between surgeries. Thank goodness for these surgeries. They help but TN comes back so need an ongoing solution. Medical marijuana might be a possible solution?
The vaporizer is a tool that heats up the Marijuana and turns it into a vapor that can be inhaled. It's an alternative to rolling a joint and smoking it which is much more harsh due to the fire and smoke.
Vapor is also more fast acting. It also leaves less odor around the house if smoking indoors.
So far no positive results after 2 days. Going to keep him on it twice a day for the next week. Have also an appointment with a Marijuana clinic.
Keep us informed. And thanks for the explanation and good luck with your dad, poor guy!
Don't feel disheartened, there is hope with TN. I've suffered with it for over 5 years now, and there are things that you can do to help. I'd ask your GP for a referral to a facial pain specialist, these are often neurologists but also some maxillofacial consultants are very good too.
Have a look at the Trigeminal Neuralgia Association UK website, and it's worth contacting them as almost all the volunteers are sufferers or carers so they are very understanding of TN and the problems that sufferers face. They will be able to help you with any questions you may have and point you in the right direction. There is hope out there, so don't despair.
Stop it with one of the surgeries for TN. That seems to be the only way to get your life back as far as I can tell. The drugs don't cut it for most.