I had about 2 or 3 months of blissful normalcy. I was taking 800 mg of Tegretol along with Cymbalta. Problem was that the Tegretol made my eyesight all funky and I have been unable to drive. Well, a few weeks ago the pain started to come back. My neurologist told me to lower the Tegretol to 700 mg to see if my eyesight improved. It did not improve but the pain keeps increasing. There have been a few days I've had to take Percocet again! He had me start Elavil and wants to see if that helps in a couple weeks.
I'm heartbroken that the pain is returning and I'm so scared that it is getting so bad while I'm still taking 700 mg of Tegretol. Is it normal for it to get bad so fast? Most days are tolerable, but the days that are not are really horrible.
After struggling with TN for almost four years and being on this forum for almost six months, I can tell you that there seems to be a river we’re all traveling on with many tributaries and lots of rapids and drop-offs and sheer walls and none of us are taking quite the same trip to “normal”. I’m so sorry you are feeling such bad pain again. Give the Elavil a good shot. It often takes a month or two. It might just do the job for you in synergy with the 700 tegretol. I’m a gabapentin taker and find nortriptyline works well with it, also tramacet. If I take too much tramacet I get blurry vision so need to monitor it at all times. If I am exposed, or expose myself to too many triggers, nothing works but to sleep and reset.
So hang in, don’t panic, and see what happens.
Wishing you the best.
Bellalarke
Thank you! I'm working on hanging in here. Sometimes I just want to curl up and cry myself a river. Not just from the pain, but from the exhaustion of dealing with all of this. I thought I finally had something that was going to make my life all better. Guess I need to not get my hopes up too high. It's so frustrating!
I really appreciate your words of encouragement and hope.
My moms on 400mg Tegratol, and 300mg of Lyrica. It's helping her big time. She's a little off balance, but you might want to discuss Lyrica with your doctor. We hear it's expensive, so insurance companies aren't on board yet, but if you can, try it out.
I had to go off the tegretol, I felt like I was drunk, plus I got a rash and pain where my liver is. Too bad since it worked better than anything else Dont give up Jenny. I feel like crying and then instead I get really angry. It is very exhausting but do not give up..
Thank you KeepinOn and Terri. I am hoping the new medicine makes a difference soon. I guess I didn't expect the pain to come back so strong. I really think I'd rather see funky than feel this pain again. Today has not been a good day, so I'm hoping tomorrow is better.
I'm not familiar with Lyrica. I will certainly ask my neurologist about it!
With all the awesome things being done in the medical field, you would think they could fix a nerve problem...
For immediate relief -- if you haven't already tried --- get prescription called in for lidocaine patches or lidocaine face cream - lasts up to 12 hours for many people!
I was on tegratol and gabapatin for the longest time…drugged and could never see straight but no pain. Yes I would say it can happen that quick, seemed like over night. The pain got sooo bad. Might be time to talk to your neuro about surgery of some kind. I had a balloon compression done because a MVD didn’t work for me…am now drug and pain free
Take care of you
Linda
Yes, I will call my Neurologist tomorrow. I would really love a MVD, but the doctor wants me to try lots of different medications first. I was suppose to have an appointment with him tomorrow, but because of insurance complications they need me to reschedule. I wish this was all a bit more easy. Dealing with the pain is more than enough, but dealing with everything else that goes with it sometimes seems impossible. I'm taking it all one day at a time. Thank you all so much for the responses!
Sorry it’s been one of those days, they are so disappointing after a break from the constant pain.Don’t give up on the meds, I have shuffled meds around for the past year and half but am now doing much better on a combination of trileptal, lyrica and endep.
I struggled to function on some combinations of medications and everyone is different so trying to get the right mix can take some time. It is exhausting, just thinking about pain is painful if that makes sense.
I think one of the hardest things to cope with is the constant changes that seem to go with having TN? It is challenging both physically and mentally which is not something I really appreciated when I first got TN.
I had a wonderful month while being on gabapentin. It stopped working last weekend very abruptly. They doubled my dose but it isn't doing anything except making me more goofy. They asked if I had enough meds to double my dose until they could call me in a prescription-I did. I went to pick up the prescription only to find out my insurance wouldn't cover it and I didn't have $200.00. Now I am rationing my gabapentin while I wait on a mail order to be shipped on 7/30. I won't even have enough meds to last if I only take one per day. I don't see a double dose helping when it had worked so well for a month and then just STOPPED. I too do not understand how a med could help so much for a short period of time and just STOP. I hope you get some relief soon.
Thank you, KC, I would love the list and will email you.
Trish, yes, I think the constant change is enough to wear me out! Right now I don't know what to expect from day to day. Month to month is a complete mystery!
Lulu, I'm so sorry the gabapentin stopped working! Would you be able to get a partial refill from the pharmacy and then it would cost less? I've had to do that in the past with expensive meds that my insurance wouldn't cover yet. I know my doctor would increase the Tegretol if it weren't for my eyes going all kooky. I hope you get the increase and that it helps!
Just an update on this. I saw my neurologist today and he wants me to increase the Tegretol to 800 mg and if that doesn't help he said to go up to 1000. He also said that if my vision is still giving me problems, we can start looking at an MVD. I am so relieved to hear that but also scared to death. I don't understand how my vision could improve since it's already having problems at 700 mg, but he seemed to think there was a chance. I'm hoping that the increase in Tegretol helps drive the pain away SOON!