it starts with a cork screw being forced into my jaw near my ear, then a wave of icy pain through my back teeth, a burning stab in the ear drum followed by a series of ululating electric shocks piercing the left side of the tongue.
It lasts about 8 seconds start to finish and is followed by a calm serenity
for a moment
then it begins again
Elegant pain!
Mine shoots through my left lower jaw and then my tongue burns on the left side afterwards. It sucks!
My heart goes out to both of you I endured that pain for 8 years. I did the tegretol and doctors kept increasing the meds till they eventually had no impact at all plus side affects were really starting to get brutal. I never did get a lot of relief from the tegretol to start with but was desperate. Have either of you considered the surgical route? In most cases it solves the problem and although invasive surgery not painful and recovery is pretty easy. god be with you I know what you are going through
wow-- never heard such an apt description. You are quite the writer!
tacocat I know... a little bit overboard right lol?
Ed, I haven't considered surgery seriously at this point. I haven't even seen a neurologist yet and it's been 10 years, also I'm afraid of it. I have had back surgery (a micro diskectomy) but that had a 97.5% success rate so the odds were good.. My Dr is reluctant to send me to a specialist. I don't know why. I can relate to what you said about side effects. I was on carbamazopine for the last 10 years with increasing doses over time. I ended up at 1200mg and even that didn't get rid of all the pain. The side effects got worse over time, the doctor said they would get better but they never did. Major side effects for me were drunkenness...literally double vision, slurring words, staggering even fell over a few times with bruises to prove it. Terrible tiredness which drove my wife nuts. I was always tired, too tired to do much more than work my 9 hour day 5 days a week. So we switched to lyrica last Monday. Not as much pain relief as carbamazopine but I'm only at 300mg. Dr says if that doesn't do the trick after two weeks to see him again to increase the dose. Side effects of this medication are pretty interesting, much better. I get dry mouth, not as hungry (I could stand to lose a few pounds), calm, relaxed, in the now. Must be a mood altering effect to this drug? I ordered a lidocaine ointment that I'm going to try too, it should be in tomorrow. So that's me in a nutshell. I assume from your post that you've had a successful surgery. What did you have done? Where? What were the results...how do you feel?
Hi Pierre,
Everyone with a dx of TN should be seen by a neurologist, an MRI should be done and if on Tegretol blood work should also be done regularly ( every 3 months) to check levels as it can reach toxic levels in your liver and cause other problems. My max was 1600mg Tegretol CR. I’m currently on 1200mg.
I hope as you increase the Lyrica you find pain relief. I was able to purchase a lidocaine mixed cream from my local Shoppers Drug Mart over the counter called Emla. It actually helped take the edge off a little, what a blessing.
Request a consult with a neurosurgeon, you don’t have to decide to have surgery, but it would be helpful to consult with a few to know your options should you decide to go that route. I consulted with one here in Edmonton, and one in Winnipeg ( via email and phone) my left side TN 2 became med resistant, I didn’t want to make a decision out of desperation, knowledge is power.
My left side TN became worse and worse my right side stay managed by med.
This past April I had an MVD in Winnipeg with Dr. A. Kaufmann. Here’s his website;
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/index.html
No compressions ever were seen on my MRIs since 2002…he found 3 compressions and my left side TN has been sooooo much better. I finally have hope for the future and may even be able to return to work in early winter after having been off for 2 years on long term disability.
I’m not advocating MVD, it’s a personal choice, but I do advocate research and being informed, knowing your options.
All the best Pierre,
Mimi
Thanks so much Mimi, that's a lot of valuable information for me. I'm not 100% sure how to use this site so I think this is where I should respond to you isn't it? I am surprised by what you said regarding carbamazopine. I think in a 10 year span I had my blood checked once for levels, that was about 2 years ago. Now you have me very concerned that my GP isn't taking this seriously at all or doesn't quite understand what he's dealing with. I prefer the latter because no one knows everything and I like to believe that everyone is caring, compassionate and truthful even if it hurts me (dreamer right?).
I'd like to see a neurologist. I asked my Dr about it again last week but he said no, try the lyrica first. Since reading all of the valuable information on here i discovered that there are different TN. People say atypical, tn1, tn2 etc. I didn't know there were different subgroups, I'm not sure which one I have. I've described what it feels like. Maybe someone here could diagnose it for me so I can tell my Dr what I have and how we should proceed.
as for surgery I admit that I'm very afraid of the outcome, and I can't afford to take much time off of work. I know there are long term options out here, the pay per month while on leave would mean severely changing our lifestyle. I don't know how my family would react to something like that.
I still work full time. i sometimes have trouble talking. Since I work in public it's very embarrassing to me. I work with a group of about 300 to 400 people and it seems I keep having to explain what I have. They ask when it's visibly clear that I'm in pain. I'm in management so have to keep a stiff upper lip as it were, "man up" as I keep hearing in the workplace. It can be exhausting.
Sorry....I talk way too much don't I lol
Pierre, you really should see a neurologist and be treated and monitored by a specialist familiar with TN. Also as Mimi said, when taking tegretol you need to go for constant blood work ups as the med can affect other organs. I dont remember what my final dosage was up to but it was causing me to slur words and mix up words in sentences. I can urge you enough the need to be seen and monitored by a specialist.
You said that you havent really considered surgery yet ,and that probably is the last resort, but make that decision with the counsel of a specialist. I found the side affects from the meds were far worse then the surgery and recovery but situation and results are different for everyone.
You had asked about my surgery so let me tell you how it went. After 8 years of the pain I finally found a neurologist/neurosurgeon who knew what I had. I went through having a tooth pulled,,,tegretol,,herbs..pain killers, devices to alter my jaw alignment etc.This was 30 years ago so diagnosis was probably more difficult. The month prior to my surgery my pain was so intense that I spent 30 days and nights on a lounge chair and couldnt sleep waiting for my surgery. I had my surgery 30 years ago at Temple Hospital in Philadelphia by a Dr Kenning who actually was about the same age as myself at the time 33. My TN was on my left side and he performed the MVD surgery. Everyones results and experience are different but I woke up with the pain gone and have been pain free for 30 years. I was truly blessed . The neurosurgeon will give you the potential outcomes and the odds based on your situation. My recovery had 1 little setback when I noticed a small bubble , like a blister, at the base of my incision. I called my doctor who met me at the ER of my local hospital and told me that it was a spinal leak ( which is not so uncommon). he readmitted me to Temple and did a spinal tap to relieve the pressure and injected my own blood into my spine to seal the leak. Went home and never an issue since. Occasionally I will get some numbness on the left side of my face but that comes and goes. That doctor saved my life because living with that constant TN pain was at the point of unbearable. My issue was an artery pressing on the nerve and 2 veins wrapped around the nerve. The artery was shifted and a teflon pad put in place and the 2 veins were eliminated.
Good luck Pierre and I wish you relief from your pain
Ed
Pierre,
It’s not your doctor being uncaring,I’ve had doctors too that just don’t know.
You’ll find that we the TN patients know more than our doctors. It’s important that your doctor is willing to learn to be able to guide you with med choices or procedures down the road.
I think in your situation I would go in to see your GP and talk to him again. Explain that it is important to you to be seen by a neurologist as you’re not sure you want to be on medication the rest of your life. ( whether that’s true or not doesn’t matter) 
And you would like to understand and gather more knowledge about what other treatments, procedures are available.
Explain that you know others with TN, and they have neurologists to help guide them in their care, you are vey grateful for the care GP gives you but would like more info.
If he/she will not give you a referral, you can go to another doctor at a clinic or an ER and be seen by a Neuro there .
Pierre, I never knew there were different kinds of TN either. Here’s one page that describes the differences.
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html
TN 1; electric shocks
TN 2/ ATN; is a more constant burning, boring pain
I have TN 1 on my right.
I have TN 2 and TN 1 on my left.
Yours sounds like a combo of both.
Keep reading and learning, try not to stress about work etc, it just makes things worse pain wise. I know its easier said than done. But ultimately your health comes first.
I wish you well with the Lyrica and with your doctor! ; )
Mimi
My Doctors secretary called me today. They are going to make me an appointment with a neurologist. I'm pretty exited by this news. Perhaps I can finally get a diagnosis.I don't know I'm always afraid of wasting peoples time.
That’s awesome Pierre!
So the lyrica still isn’t cutting it at 450mg. Too much pain even might be starting on the middle branch of the Trigeminal nerve. It’s up near my eye high on the cheek as a prickly sensation at the end of an attack. I still have about 800 carbamazopine so I started adding one today. I took at lunch time and guess what… the pain is gone (ish). not much side effects from 200mg carbamazopine.
Does anyone else find relief with a mix of drugs? Can you mix them? My dr didn’t tell me too but he didn’t tell me not to either.
Also although my Lyrica prescription says take 300 mg I’m taking 450mg as per a phone conversation with Dr a couple of days ago.
I’m worried about over doing drugs especially I’m mixing them without having specifically told dr about it. But I really need the relief so I’m willing to try anything.
Dr has finally agreed to make an appointment with a neurologist for me and I think I have all your wonderful folks on this site to thank for that. I was able to speak confidently to the Dr about various treatments that we’ve never tried and tests that we should have been doing regularly for my safety (blood levels). This time he was willing to refer me. For 10 years I’ve been asking!
Thanks to you all.
Please let me know what you think regarding using a combination of drugs.
Well I’m finally seeing the neurologist next Tuesday. Getting the appointment was quite quick once my Dr decided to do the referral. Now I just don’t know what I’m going to say to him when I see him.
I suppose I will explain the pain but I always do that in such a nonchalant manner I wonder if it gets taken seriously. Hopefully I remember to ask for a catscan or m.r.i.