I am 32 years old and recently diagnosed by not one…not two… but three different physicians with Trigeminal Neuralgia. I went to the neurologist today for the first time and he said that my symptoms are not exactly textbook. My age was a concern as well as my pain in my upper jaw. The neurologist said that pain in my lower jaw was to be expected, but that pain in my upper jaw was not part of the V3, which is affecting me. Also- during my neurological exam, my left side of my face was not feeling as much as my right side. (My pain is on my left.) The neurologist wants to treat me pharmaceutically for the remainder of my life. Tegretol was prescribed. I am already on Lyrica. Dr. wants me to titrate off Lyrica and titrate on to Tegretol. I am currently on 200 mg once/daily of Tegretol and 75mg of Lyrica twice a day. I feel like an absolute zombie…I am getting ready to introduce another 200mg of Tegretol into my day (will be taking it twice a day now) in a few days… Not looking forward to this. I am extremely foggy brained, confused easily, and dizzy. I cannot drive. This is seriously affecting my entire lifestyle. I am very unhappy with the medication choices.
My question is this… When is it better to just do the MVD surgery and when is it better to try to medicate? I am seriously pushing for MVD. I am trying desperately to get in to a neurosurgeon’s office locally who is known for performing MVD surgery. Am I crazy?
From what I understand it depends on the type of TN you have. Type 1 does better with an MVD and has better success rates. Type 2 has lower success rates with an MVD. With it either type it is best to have the MVD within the first 10 years for an overall success. Even with succes of MVD the pain can come back. The range of when is not always the same. There are also risks involved that you should be aware as well. I suggest you look into MVD carefully and be fully aware of the benefits and the risks with this procedure. Lastly make sure you are a qualified canadit from an MVD. Not everyone is able to do this procedure. For example I had a couple well qualified doctors already tell me I’m not qualified for an MVD or any other surgery or injections for my TN, as these will end up doing more harm to my TN and make it much worse for me. That’s not to say you would be the same, just something you should know.
On the age factor, I don’t think it really matters. For me I’m in my thirties too and was diagnosised when I was 32. There have also been cases with infants having TN, the poor babies:( No one ever has the exact same pain triggers or symptoms. Each case of tn is unquic
As the individual is. So don’t worry about being a text book case. I think those are really doctors fairy tales;)
Oh and before I forget if you do have an MVD done make sure it is done by a neurosurgeon who has done this many times with tn patients.
I hope you feel better soon.
I don’t think you’re crazy for wanting to do whatever it takes to get rid of this pain. There’s a great MVD group on this site. If you haven’t checked it out and/or joined, I recommend you do. It was very helpful for me.
I was diagnosed with TN when I was in my mid-20’s (even though my neurosurgeon thinks I had it longer but it was undiagnosed). I had Type 1 and Type 2 TN of V1, V2 and V3 on the left side plus horrific ear pain. I tried meds for almost 5 years before I heard about MVD. After trying Tegretol at 800mg for a bit with only a little bit of help but a ton of side effe I decided to see a neurosurgeon that knew how to deal with TN and did MVDs often. I was ok’d to go ahead and I had my MVD this past Nov. 3 nerve compressions on 3 nerves were found and fixed. So far, it’s worked out wonderfully! I have almost no TN pain. I’m currently being weened off of Tegretol. If I had known about it, I would have gone for the MVD a lot sooner.
It’s not an easy choice and you really need to know all the pros and cons of surgery. Also, I don’t know about others, but my neurosurgeon would not do surgery unless certain meds had been tried. (Lyrica and Tegretol were some of those.) Oh, and my neurologist was not completely convinced that I should even do the MVD. He wanted me to keep taking meds. My pain management doctor was the one that agreed that i had done the pharmacetical thing long enough and he was the one that sent me to the NS. My point is you might get conflicting thoughts from Drs.
I hope some of this is useful.
Totally useful information!! Thanks so much. I am going to keep pushing to see the neurosurgeon in my area. He has done a ton of MVD surgeries and I feel he is extremely qualified. Problem is that he is always in surgery and never in the office to take appointments. Hopefully I will have a breakthrough this weekend. I have only been suffering with TN since December 7th of 2012. Even though it has been a short period of time, it has been a very rough go of it. Since the surgery is usually most successful when the patient has not suffered with TN for a long time, I am pushing for it now. Why wait in pain or groggy all the time. Do the side effects of Tegretol ever go away?
I don't think you're crazy. I think you want the pain to end............now! As far as Tegretol..........I have mostly just been tired from it and forgetful. I don't really feel drunk. But when my NP upped my dose to 600 twice a day, I WAS drunk and couldn't function. I should not have worked but I did..........I came home and slept it off and decided that instead of 600 twice a day, I would do 400 three times a day and it has not made me drunk, just REALLY tired. Coffee is my friend, LOL. I go to a neurosurgeon on the 16th. I hope he can get me on the right combo of meds so I don't have to keep increasing my Tegretol. And if he wants surgery, I am going to see if I can wait ONE year and just do meds until then. I have so much going on right now and will need time to plan for it.
I should start by saying we all react differently to the meds, but for me, I have had great success with Tegretol XR ( slow release) up until this year. As you titrate up the dose you will feel the side effects, drowsy, groggy etc.
BUT with time your body adjusts, I managed to live a pain free life, working, caring for my kids etc on 800mg of Tegretol for many years with no see effects.
I have always given each dose a week to work, if it didn’t, I would increase as per my neurologists instruction. After 2 months with no pain I would try and reduce the dose, sometimes it worked sometimes it didn’t. You’ll know.
I also experienced an 8 year remission!!! They do happen!
I would try low dose meds 600mg to 800mg first before considering surgery. But that’s MY opinion.
Read as much as you can and definitely explore all your options so that you can make the best decision for YOU!
When you say you now have pain in the upper jaw, are you referring to around the upper teeth? If so that would be V2.
In the literature I’ve read it is common to have this effect more than one branch, and it seems more common for the branch’s to be next to each other, V1 and V2, or V2 andV3. All 3 is possible as well, and so would V1 and V3, but the incident rate seems lower.
Keep fighting, Again I’m No doctor,. but I would think your appointment with Neurosurgeon would get you a much better idea of what the problem area is and if MVD would help since they would be more familiar with the exact distribution of the pain..
Thanks for the information JoeE and the affirmation. I read that as well… About the V3 and V2 being affected as a possibility. The last thing I want to do is lose a tooth unnessicarily. I appreciate the feedback!