I have to say this site is so supportive for me. I know no one else with this condition and there is no way for anyone to understand the pain and frustration other than those who suffer from it. My first bout with TN was 2008 and I was able to control it with Trileptal to a point where I weaned off of the drug completely. Unfortunately, it's reappeared and I've been on 2100mg of Trileptal/day and although it has somewhat alleviated the pain. it doesn't seem to be getting better as it had with my first bout. I've seen two Neuros and both said for me to stay the course with the Trileptal. Has anyone had my same experience? I'm hoping the drug will work again and I'm hoping that my body has not become resistant to it. I try to stay healthy and optimistic. I actually ran a half marathon the first week into the return of the TN, but the fatigue has really taken over and I sleep a lot when I have any free time now.
Lastly, I pray for all that suffer and hope that a cure will be found one day soon. This is an incredible and invisible pain and I could never imagine that it could happen to anyone. It feels better to write about it knowing that people who understand will read this. I'm married with two young children (9 & 12) and I hate that it affects all of them as well. I do my best to hide the pain, but there are times when I just can't do things a father and husband should do.
TN and trileptal turned me into a whole other person -- especially the med.
I have never heard of that high of a dose -- should you have kidney or liver check?
Are you a candidate for MVD? It can give you your life back -- TN is progressive over time - If you are alble -The sooner you have MVD after onset of TN - the higher the odds of it working well....within 3-7 years is the new data.
If you have had no nerve damaging procedures (gamma knife, etc) MVD works better
You can try and get some instant relief from lidocaine prescription patches from your doctor - 12 hours of relief for many -- that enabled me to lower my trileptal - get some IQ back and --- I picked Dr. Ken Casey.....Have you read his book "Striking Back" ?? He learned under inventor of MVD - has taught and practiced it for decades - wonderful man and my surgeon. Says MVD is a ONE on a scale of 1-10 for cranial surgery.....TEN being brain tumors and other very complicated issues and side effects.
I too was struggling to be a good newlywed wife and mom to older kids - couldn't even remember one of my dogs name half the time. -------------- check out the TNA website - has support groups listed all over US.-- Dr. Casey is on that national TNA board too.
I'm lucky to have a TNA support group here -- even though not in crises anymore - Cannot take my wellness for granted - and try to help others.
Keep posting -! You can message me if you have any questions.
I have ordered Striking Back and should get it this week. The high dosage is making me very tired and absent minded and I do have a fairly stressful job. I have been able to fly under the radar at work and will continue to so until it's not possible. MVD seems to be the common choice here. Thank you for replying.
I was on Trileptal for 6 1/2 yrs, Then all of a sudden quit working. I have suffered 13 years. It's the worse curse of all. You are right, no one knows what it is like. I've been on every drug since that known to man, had Gamma Knife 5 years ago. Then finally gave in and had MVD 2 1/2 yrs.ago. What a mistake, The original pain is gone but the side effects are killing me. I finallly got the Lidocaine Patch and it has not done anything. I guess I give up. But I sure do hate this. No one understands. My lips feel lke they are on fire 24/7, right now I feel like bugs are crawling on my lips and cheek. I think I waited too long to do anything major. Should have not done the Gamma and just had the MVD only many years sooner. I guess the damage was done and now I'm paying the price. So I do understand the pain. It's unplainable. People think you are crazy. Hang in there but don't wait too long to do anything else.
I have not heard of nortriptyline. I will ask my neuro to see what he says. I can function on 2100 but it isn’t fun. I have to push myself but I try to be active and optimistic. Thanks for the tip and I appreciate your response .
I just started Trileptal in September and am in I guess what you call the early stages of TN and on low doses - I didn't even know it could be increased that much.. It has helped keep the actual full on attacks at bay but does not help all of my symptoms. I have a 9 and 12 yo too :) I wish I had helpful input, but I think you post may end up helping me in the future with the dosage changes that always seem to be made.
2100 is definitely up there. I was taking 2400 for a stretch and have managed to get back to down to 1800. Started at 300 a few years ago and worked my way up. Shoot for the moon I say :) 2400 seems to the max dose in all the literature I've read.
Definitely get your liver checked at that dose. I take milk thistle to help with that.
I’m back to 1200 now and really don’t notice any difference I’m the effectiveness of 2100 over 1200. Just filled my third prescription and still hoping more relief comes soon. Praying for all who suffer from this.