trigeminal neuralgia, seriously cant cope anymore, tips please

H Laura - I can certainly relate to your pain issues,  and am so sorry for what you are dealing with.  I was diagnosed with TN in 2006 and had MVD surgery in 2009.  Unfortunately, the surgery was unsuccessful.  I have tried many treatment methods, several anti-seizure meds along with pain meds.  Had terrible side effects to all of these.  Finally, I do take one pain med four times a day which does, on certain days, will give me a tolerable day and I feel to get out of the house and do fun things.  Sorry, I have nothing else to offer.  Rest is good.

Hey Laura!

I'm 23 and went through the same process a year ago when I was supposed to be getting ready to graduate college. I'll be honest with you, it's going to take a while to find a regiment that works for relief, and eventually there will be breakthroughs on medication so finding  great neurologist who knows about TN is the most essential step in recovery. Be as honest as possible. I'm seeing my neurologist today to discuss recent breakthroughs and try new medications because mine was turning me into a zombie. Regular pain medications don't work so don't try any of that in vain- definitely not worth the risk. I've been putting off surgeries since many of them seem to have mixed results- including the TN coming back with a vengeance. Some people swear by it, but I'm still wary. I wish you the best of luck on the road to recovery. The great news is.. TN can go into remission on its own so don't give up! I know a woman whose TN has been in remission for 10 years. I'm still waiting for that miracle in my own life.

Hi laura sorry what u have gone throw

Hope you are much better now

Iam going throw the same

My lifes gone upside down

Can you give me any advice iam 29 yro

This has ruined my life 😭😭

Any advice plz would help so much , how are you feeling now ?

I had trigeminal Neuralgia and was on medication for about 2 years or so. I was on carbamazepine, 1600 mg a day before the operation. The specialist told me I was young enough to have the operation and he believed it would be a success for me. I was 45 at the time. This was 5 years ago and the moment I woke after the operation I have been pain free and never needed to take any more medication. I visit the hospital which Is about 30 miles away from me once a year so they can see how I am. I was asked on one of my visits if I am still on medication as some people still need to take a smaller dose of medicine even after the operation but I am lucky and so far don't need to take anything. I am very grateful to the Doctors and specialists and have told them this. I feel I have got my life back. Trigeminal Neuralgia is the worst thing I have ever had and I really sympathise with anyone who suffers from it. I am really glad I had the operation. I live in the UK and it was free for me. I had to stay in hospital for 3 days after the operation and was sick for a few days and my balance went and I had to walk with a walking stick for a few weeks but I am fine now. If anyone has a chance of having the operation then I would advise they consider it. It maybe doesn't work completely for everyone but it has for me. I hope this post is of help to someone. And I really wish everyone who reads this every luck in beating this awful illness.

I am praying for you. I had the mvd and they cut some of rhe nerve. What did they do to you?

Hi Im not a doctor but I have TN just like you. Never go to a neurologist or take medication for TN. Somebody adviced me to take Vitamin B1B6B12 3x a day. Google this vitamin to understand it more. It work for me and I hope it work for you. God Bless!!

Oh to follow up what I said, the pain is almost completely gone about 99% not 100% coz Im just using it for just 2 months. It never attact me since.

Nor should you no one can cope with it!  Get a surgery! I did and have been painfree for over a year so far and if it comes back they burn the nerve again...radiofrequency surgery. You can do it as many times as needed. I am in Oregon. Had it done at OHSU. There is a doc there that specializes in this.  Kim Burchiel.

I know you posted this years ago. And I didn't read everyone else's replies. But I do know that taking a bottle of tramadol will probably just make you feel sick. And from what I've recently learned about TN, the pain med doesn't help much. It's not even really a narcotic. It's more narcotic-like. lol. Yes! I agree about labour! I had my daughter with no drugs and would much rather go through that again that have this disease. Please don't understand that all you want to do is hide away. I know that sleep helps. Stress makes it worse. I found that I just don't rebound from stress quickly in the sense of the TN doesn't rebound quickly. The rest of me might but if the stress happens to affect the TN? It can take a few days of sleeping in, and maybe even sleeping the days away for two days, before I feel like I can even function or want to eat or anything. What people don't understand is that this is one of those few diseases where you can't "power through it". I've literally broken my ankle and still walked on it and dealt with the pain. This is different. This disease? It takes me down and makes it so I can't function. My advice is to get used to this being your new normal. At least for awhile. At least until you figure out what works for you. Having patience for yourself is going to be one of the hardest things you may have to do (at least it is for me). And please know that not all anti convulseant meds are the same!!! There are different classifications of them and some work really well for some people while others don't. So don't get discouraged if one medicine doesn't work well. Your body's chemistry will interact with a medicine differently than someone else. It's like depression and other diseases - it just takes some trying out different medicines before you find the right one that works for you. This is dealing with your nerves and nerves can be pretty picky on what they want to respond to. 

I hope that by now, four years later, things have gotten better.

Good luck.

I deal with this awful pain as well. Now I go to pain managment and they changed my gabepentin to GRALISE. It is a time release so I only take it at night. No more foggy head and forgetfulness. They also do injections in my face every couple months. The reliefe has been amazing.

I too was diagnosed with trigeminal nerve pain in the 90's. My Dr. put me on carbmasapine. (not sue the spelling) I went off of it 2 years ago. I ended up having a flair up. I saw my dentist. He thought it was my teeth. I had a tooth pulled thinking this would relieve the pain. The pain went to the next tooth. After having a root canal I went to a specialist. He said pull the tooth.

I get woman's world magazine. In there there was an article about nerve  pain. It suggested taking Turmeric. I also take El Carnatine.  I found temporary pain relief through this combination. (I now don't eat sugar. It makes it flair up) 

I also found a product that Walgreen's & CVS sells called RedCross tooth pain relief. It also takes the pain away & it's easier to sleep. Have to sleep with 2 pillows. It decreases pain. Hope this helps. God Bless you & your loved ones!

 

HI Laura:

I am in my second year with TN and I know the pain your are in I was on Gabapentin for 1 year and it kept me out of pain but I could not drive had a foggy brain most of the day was difficult to work my job even from home started to get bad reactions to it so got off or it to the next choice Garbazepine this was much better no tiredness no foggy brian and I could drive. My problem is the cold can bring on the pain even with the medicine so for the last 2 years I have lived like a hermit and only going out when truly necessary. I am covered with a hat that covers my jaw line and a scarf over that to go outsoors and I can't be outdoors for any long periods enough to run into a warmed car and run into a store to shop. My dr gave me a handicap permit so the walk is not so far to get into to places. the thing is you got to take the meds every day I take at bedtime and I feel no pain unless I get it cold.

I had the surgery MVD  decompression of the nerve I regretted this decision as it did not work for me. I was so depressed to have the added pain from the surgery only to get back on the pills It has taken me 4 months to feel human again but still not resolved.

They want to go an operate again and shred the nerve fibers apart next but no guarantees, holding off on this decision as i can't face another surgery yet it was too brutal of a surgery for me and I am 63 years old but look 50.

My next option is the glysol injections which cn last 2 years pain free or 4 years or 6 months it depends I have heard of the MVD suregery working on some people but then 4 years after the pain comes back.

There does not seem to be anything that works 100% nor can they guaranteee it will work.

I am now taking APTIOM which is a derivative of carbazepine I find this one the best one so far for less side effects and seems to tolerate coolness a bit better than the other medicines.

So the third one here is the best try it and get your life back also get into counselling it helped me so much for the depression of this decease and can be your support system if your not getting it at home.

I hope you find a solution for the  pain do it soon ok, I wish you all the best.