I've had TN for about four months now. I had it last year, coincidently at the same time of the year, but it was not so bad and it disappeared after three months. I'm taking Tegretol (100mg) but seem to be taking more and more every day to stop the pain. The pain is in my jaw/cheek area. Should I ask my doctor to give me a higher strength medication? I wonder if I'm stuck with this now and that it may never go away. I'm 63 and work part time but it is a strain and I still have three years left before I can retire on a full state pension. Will this pain ever end?
Good morning Stephen,
That’s a question we would all like the answer to but I can only tell you about my experience with TN in the hope that it may help. It started over five years ago, there were several remissions the longest being 18 months. Unfortunately they became fewer and fewer, Ive had this present bout since November 2016 and am currently taking 600 mg Tegretol (originally started on 200 mg and gradually increased because of flare ups). I am also 63 and thankfully retired although I did work a couple of years with TN which was exhausting.
I have tried not to be frightened, to accept the condition and work out how best to live with it and tried not to let it change my everyday life. It’s an ongoing struggle but I will fight on!
Why not contact your doctor and seek their advice.
Hooe you feel better soon.
Hi Stephen - I was diagnosed with TN in 2006 and had MVD surgery in 2009. The surgeon found three problem areas, He was able to correct two of them. My pain has been constant since I was diagnosed with some up days and many tolerable days which do give me some quality of life. I am on disability. You described your pain in your jaw/cheek area. That is where I suffer with this pain. I would for sure talk with your doctor about increasing your pain med. It seems the med you are taking is helping you but not enough to keep those nasty pain levels at bay. A micro-vascular decompression surgery may be the answer for you. Even though it has not helped me, I do know of sufferers who had this surgery and are now living pain-free lives. Search this out with your dr or get a referral to see a Neurologist. I also suggest that you should have a MRI with contrast done. This MRI will pick up any compressions in your brain. I have been "through the mill" seeing many doctors, specialists and two brain surgeons and have much info to offer. I would be pleased to answer any more queries you may have. You are new with this disease and it can be scary as well as confusing. I am in my 11th year and through these years have gained much knowledge per my case. Wishing you the very best and know I am here to offer any support, info., etc I may be able to offer
Thanks Anne. Yes, I'm gradually coming to terms with it now and learning to accept my condition. I think its partly because hardly anybody I meet seems to understand the condition and what its like (and can be quite unsympathetic!) and partly because I never ever expected to be taking painkillers every day of my life (I know some people who have been on them for years). It's come as quite a shock. I remind myself that at least I'm still here and have my independence and live in hope that something can be done for me one day. I'm sure I will be seeing the doctor again soon. I will have to get the results of the Maxillo-Facial examination that I have this week as well. Tomorrow I will go and request a repeat prescription for the tablets. Maybe my doctor will prescribe stronger ones when I see him too. Glad you're coping okay and hope you're not feeling too bad at the moment.
Hi Marlene, I've heard of MVD and will certainly look into this further if the opportunity to have surgery comes up. Yes, I will talk to my doctor about increasing the strength of my pain medication. Fortunately he is a very good one and knows something about our condition. It's curious because I saw a neurologist about a year ago and he didn't seem to think it was TN that I had. He actually sent me back to the dentist! The dentist has seen me on several occasions and can't find anything wrong (she's mystified!). I had an MRI scan about 8 months ago and apparently nothing showed up there either! I have a Maxillo-Facial examination this week but I'm not optimistic anything will show up there either. It could be a case of going back to the drawing board, so to speak! I know that specialists don't always have all the answers. I found this out about 20 years ago when for 18 months I went backwards and forwards to see ENT consultants, none of whom diagnosed the problem I had. In the end I went private and saw the top man in the country at the time who said I needed a septoplasty. Although it was expensive, it was such a relief to see someone who knew straight away what my problem was. Fortunately I had a good job at the time and was able to afford the surgery. I'm not one to run down the NHS usually but they did fail me on that occasion. What did you mean by 'MRI with contrast'? Is that not what I have had already? Thanks very much for your advice. I'll let you know how I get on and I'm sure you may be able to advise me further as time goes on. I hope you are having a relatively pain free weekend!
Hey Stephen
I sympathise completely. Had TN type 1 for about 3 years, controlled ok by Tegretol but had several break throughs and then I found that even when on 1600mg per day (I’m a big bloke and could tolerate that) I still had flare ups. My high quality MRI ( the only one your consultant should consider) showed the classical compression of my Trigeminal nerve root by a pesky artery. In fact my neurosurgeon said it was “beautiful”! So I was prime candidate for MVD. I was 69 at the time and have made a really good recovery with no significant after effects other than a suspect pseudo meningocoel which is no bother really it just impairs my hearing on that side now and again.
Have you got TN1 and have you been referred to a good neurologist Team?
Where is your major hospital group?
Cheers
Big D
Hi Big D, Thanks for your reply. Being a big bloke myself I think I could tolerate a larger dose than what I'm on at the moment too! I'm honestly not sure if I've got Type 1 or 2. The pain is constant (a bit like having a toothache pain 24/7) and I don't get flare ups as such. Does that mean I would probably be Type 2? I'm only just finding out about this. I havn't even been diagnosed as having TN yet, but two doctors seem to think it is. That must have been a relief for you when the neurosurgeon told you about the 'pesky artery'!! Perhaps I'll get a definite answer soon. I have to see a Maxillo-Facial specialist this week but I'm not optimistic they will find anything. It would rule out TMJ though. Not sure if you live where I do but my nearest hospital is the Conquest. I live in Hastings, UK. I have x-rays from my dentist if the examiner wants to see those this week. My dentist has been unable to find anything wrong and refuses to remove what she says are perfectly good teeth. She only found evidence of grinding. I'm not sure if the MRI scan I had last year was a high quality one or not but, according to the specialist, nothing untoward showed up. It's a mystery! Maybe another scan might show something since its been about eight months since I had the other one. Glad to know that you're doing well now! - Steve
A lot of people have surgery to relieve the pain. I started out using Turmeric. This is a natural pain relief. I to have to up the dosage. It happens with most pain med.'s. If you go to youtube & type in pain relief of trigeminal nerve pain you will find a lot of help. Good luck & God bless you!
Hi Vicki, I think it was you who mentioned turmeric before. I have the turmeric I ordered and also L-Carnitine. Does it take a while before it kicks in, so to speak? I'm waiting for the magnesium glycinate to arrive in the post now. This was recommended by someone else. I've seen some of the videos about TN on YouTube. I'm sure there are many videos made by people who are sincere but I'm wary of the charlatans who are just using YT to sell their wares or recommend a "specialist" who will fleece them of their money. I suppose its early days for me yet and I'm new to all this 
It works with in minutes. My Dr. just put me on Carbamazapine. I saw a specialist. He prescribed an over the counter med. that works in combination withe the Carbamazapine. I don't take them together but hours apart when I need some relief. It's cold Alpha Lipoic Acid. He said 600 mg 2 x a day. Walmart sells it. I take 400 mg. I don't want to go to the max right away. Puritans Pride also sells that. Didn't want to wait so my husband went to Walmart.
Stephen I have had this nerve problem for 6 years.....comes and goes...last about 2 months. This last one was the worst....November and December. I am taking 2000 mg of gabapentin....St John’s Wort with vitamin B...getting Bowenwork done......I have been pain free for 2 weeks now,,,,,,just small shocks ever so often....this’s I can handle.....hope this helps.
Don’t forget that you can have both TMJ and TN. I know, dreary news, but true. I have both as well as various types of migraines as well due to completely unrelated medical reasons. Face Pain Accociation is the largest support organization for TN in the U.S., and possibly the world. They have both US and international support groups.
Here is a link to get a guide on TN. http://fpa-support.org/support-network/guide/
And they published a book a few years ago on TN. But, in my opinion, it’s still the best and most comprehensive book for sufferers on the topic. The cheapest place to get the book is still through their website. The book is “STRIKING BACK! THE TRIGEMINAL NEURALGIA AND FACE PAIN HANDBOOK”. Like to it is: http://fpa-support.org/striking-back-the-trigeminal-neuralgia-and-face-pain-handbook/
I hope this helps. For me, it helped me understand why it was so hard to diagnose and why there is so much more they are learning. Good luck!
Stephen87155,
Hello,
u need to get on social securitg disability b4 u reach 66 bcause u get more on disability than plain social escurity
ur social securith dusability turns into ur FRA when u turn 66.
Do this nkw and if u get denied u will get thousands in back pay from Social Security Disablity.
talk with Social Security about ur diseases TN is listed now In The liting as a disease now. Get ur doctors to put down that why he/ she is prescribing thiese meds and ask for a sttonger dose. Cont6 tell them u are going to apply for didability. Keep on working have Socias Disabity tell u what u need to do don't apply for Social Srcurity but Social Security Disability. Their is a difference. tell social Security u need disability and tell them to recommend the lawyer fir u, if u get denied and u will win the case doing it ur own self first and then u the lawyer they recommend u get thousands in back pag. in other words u want to get denied at first so do it urself. Go to ur doctors as much as possible get other doctors opinions this willhelp u when ur claim is done with ur records.
if u decide on surgery get the one where doctors use ballkn thetapy, don't stop working. keep working if u stop u will get regular Social Security u want disability.
God bless us and keep us and give us peace
Hi Stephen I just wrote you a very long message and somehow lost it. Will write again soon. I am a bit upset - need to calm down.
Hi Marlene, sorry to hear you lost the message. I sometimes copy mine as I go along just in case that happens to me Its not so bad if it happens in email because it usually goes into the Drafts folder! Feel free to write anytime. I might have some news about my Maxillo Facial examination tomorrow and they will probably write to my doctor about it as well. Take care, Steve
Hi, yes, I will probably join that organisation so that I can keep up with the latest developments re TN. I may buy the book but being on a low income I might have to wait for a while. At least its cheaper through that link you gave me than on ebay and amazon! My dentist didn't seem to know much about TN otherwise she may have prescribed carbamazepine. It must be awful to have TMJ and TN together as well as the headaches. The funny thing is, since this thing started, it has made me all the more determined to carry on doing the things I like to do in life. I suppose it all depends on how serious the condition is. I have my Maxillo Facial examination tomorrow so at least I'll know where I stand when it comes to TMJ (I hope!). I hope you're having a relatively pain free day today. Steve
Those other medications are not doing anything for me I'm afraid. I still have to take the Carbamazapine and get almost instant relief from that. If the turmeric etc work for you then fine but I think I'll give them a miss for now. Steve
Thanks for your advice. I'll look into that! I'm glad TN is on the list of disabilities now. So it should be.
Hi,
I am in Hastings too! I had pain for many years and thought it was a variety of migraine as it was focused on my left eye. It was only in the last two to three years that I began to realise it most definitely was not migraine. The pain got more severe, more frequent and began to affect other parts of my face. I have episodes of absolutely no pain at all, anywhere on my face, but then I will suddenly get the stabbing or electric shocks. My triggers are cold wind, eating and a variety of others. I have a confirmed diagnosis of bilateral TN1 affecting all three branches, often a combination of two or all three during an attack.
Since starting Carbamazepine I have been experiencing far fewer episodes of pain. And despite taking precautions to reduce attacks I suspect I will need to further increase the dose of Carbamazepine, currently on 1200mg a day. As awful as it is for you I am soooo glad to know that I am not the only person in Hastings with this hideous disease! 😁
Keep your spirits up and best wishes.
Hi Susan, you're in Hastings, East Sussex, UK? I know there is a Hastings in the USA too. Sorry to hear about the pains you experience. It must be awful. Actually, although two gp's diagnosed me as having TN, I went to the hospital today to see a Maxillo-Facial specialist and he said I've not got TN but TMJ instead! I've been off the painkillers for a couple of days but the pain is beginning to nag at me again. I get these cramps in the jaw muscles which are incredibly painful. I've had to get up at 1.30am this morning because every time I tried to sleep it was impossible. It seems to be when I'm on the borderline between waking and sleeping that it really gets to me. The specialist I saw has given me some facial exercises to do. They're not very clear and I must admit that I've found better ones online. He said there's 'no quick fix' for it, so I could be stuck with it for a long time. Pity I can't just stop using my jaw completely for a week! I've been advised to only eat soft foods from now on. The Carbamazepine was helping to reduce the pain (whereas co-codomol didn't) and I've asked for a repeat prescription of it (higher strength if possible). I hope you will be able to get the higher strength medication as well. I actually live in St Leonards but I work p/t in Hastings for a local charity. I walk in every day. Has your doctor/consultant suggested any surgical procedures to you like MVD? I'm going to start a separate thread sometime this week to mention the TMJ. Do you know if TN is recognised as a disability in the UK? If not, it ought to be!
Best wishes to you,
Steve