Hi, I am 66 yrs old. I have TN-5th nerve of 3rd branch. Means i have pain near to my left ear. The pain started 6 years back. I have visitied doctor and started medicine tegritol 50mg. Its was fine for few months. Then again pain started and interrupting my regular day to day activity. Then i went for Electric shock treatment, in which side getting pain will be applied. I did this treatment on 2010, till last month ( june) 2016 didn't encountered the pain. But july 2016 onwards, i am getting severe pain. can not control and tegritol medicine not controlling the pain. During the severe pain, my hands and legs getting shaking and can't stand , i will fell down immediately. And during this time, i am not able to remember anyhting. after some time i came to normal. Also under the tounge , i am getting severe irritation and getting severe pain. And not able to speak. Its continuing.
I recommend MVA. As I have understood it helps in most normal TN cases. Unfortunately I have atypical TN so for me it didn't help much. Before I got the surgery I read a lot in Internet about it and asked around. The surgery went very well and after 10 days I was up from bed. So I don't see why you have to suffer. Just do the surgery.
Carbamazepine/ lyica/ Lamotrigine That's just a few
I had the MVD and oh my God I was very ill after surgery 12 days ill and then 5 days in the ward. I can go on about all the things that went wrong and ruined my life for good. But I have heard good as well.
I would go down the route of Gamma Knife less invasive treatment (which is a radio active treatment, i think it is just a one off)
I have never heard of anyone with TN having Electric treatment? like you are saying. I can honestly say I'm in pain and very irritable when my tablets are needing changing to New tablets again. I hope this can be of any help?
Did you have a good surgeon? I was lucky to get a surgeon who has done head operations for 30 years. He was a neurosurgeon who specialized only on head operations. I also had some problems. For 10 days I could not get out of bed as my balance was awful. Because of balance problems I felt sick in stomach all the time, I was like seasick. Also half of my head is numb. But now 2 months later feeling is starting to come back. But if it takes away pain then totally worth it. Which was not my case
Patz I forgot to ask how old are you and do you have typical/atypical tn? Do you manage to live normal life with taking pills? This horrible tn is new to me so I try to find ways to accept it and live with it. I don't understand is it possible to have a normal life with tn or no
I am very sorry that you have this pain. I had it for 18 months prior to electing MVD surgery. my case and age is very different from your's but i would first start by increasing the Tegretol dose. You are on a very low dose at 50. I had started with 200 and eventually gone up to 800 perday in order to control the pain. At your age, i would try high dose meds first before considering any invasive surgery like MVD. Please speak to your doctor about upping the doseage.
I am the same as you, lost balance, double vision, couldn't eat properly, jaw was out of place, severe sickness and found out it was migraines and couldn't feel half my face and still can't after 2yrs and on more tables than i was before operation. I feel my quality of life is never going to the same. My surgery was in Aberdeen and my family brought my life down to Yorkshire where they are, so they could care for me. I am a lot better than before. I can't go out sometimes when it is very windy, as my face reaĺly hurts also cold weather. I'm only 51 now.
Life is very hard at times but I do try not to let it get in the way but it does rule my life at times. Been told I won't ever be able to work again, due to condition. It does upset me quite often. I'm 51
I am in the age of 66. But need to check with doctor about the surgery. If its reduce my pain and no issues, i will try to do surgery. Thanks for the advice.
I am 66 yr old. after having the tablet, i am able to go normal.
But when i get severe pain, i lost my control and fell down where i am. Even while driving, i hit into the tree. So i am not going out with own driving. Its pathetic.
Patz I am really sorry to hear that you have it like that. Did you have atypical tn like I have? I can't work either and now I'm full time housewife. I am only 26 and I have no kids. I really want kids, but not sure how can I get them when I am full of pills. I know how you feel. Some days I am so low that I think about taking overdose or something like that. It is very hard to keep fighting every day. Do you have kids? I'm sure kids motivate to keep going every day. I wish I could tell you that it will get better, but sadly I don't know that. I also don't know what happens with my own life and that's a scary feeling. You have pain because of anesthesia dolorosa? Is your tn pain gone? Pills don't take away your pain?
I had a discussion with doctor and confirmed that operation is NOT required.
None of blood vesals is not giving pressure to V3 nerve. I am geeting pain.
Now started tegretol 200mg and given injection to reduce the pain. No idea about the injection. Now felling better. I am able to walk alone and able to have food.
Hiya Dona. The TN which I have is when a vein is rubbing against a nerve. I had the injection through my face and they did work, well it made it a lot worse and then after my MVD op they had damaged another nerve which gave me a double whammy (anesthesia dolorosa) Yes i was the the same as you, suicidal a lot of the time, thinking I've lost my life. But my ex partner gave me a lot of support and a hell of a lot of tissues. Dona I find it hard writing this because I'm slow at typing and it's now playing in my mind. If you e-mail me I'll give you my mobile number. And don't worry about not having a baby because I've meet someone who is due her baby in October. Tell you more later xx
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Hello! I am a 54 year old woman who has had TN for about 5 years. The Tegredol worked well for me, until it didn't! I was taking 600 mg a day. After it was no longer effective, I scheduled surgery and upped my dose to 800 until I had the surgery. Unfortunately the surgery was unsuccessful. Now I'm back on the Tegredol, and I've started Vimpat. I guess I'll try the gamma knife surgery next. Living with this pain is not an option. I guess what I'm saying is that you should up your dose of Tegredol. I'm going to look into Botox as well. I sure hope you feel better!
Agreed Tegretol dose. has to be increased over the years. Under neurologist care of course. I too am at 800 now. Taken evenly, 200 every 6 hours important in my case.
I too have Trigeminal Neuralgia on the whole right side of my face. I am taking Gabapinton 300mg 3xa day. One in AM, One at midday and two at bedtime. It does not stop all together but just a tinge here and there but at least I can cope and do my work now. I am too afraid of having the surgery or radation. Do not take Tegritol as I do not like the way that made me feel and I think it is bad for you. My friends are nurses and they tell me that most people take the Gabapinton so you should ask your Dr. about it. I wish you the best and if you get any info please forward on to me. I think there must be something besides medacation and cutting into your skull that is so risky. Until I hear from you have a blessed day and God go with you.