Just had my dose of gabapentin increased from 1200mg up to 2700mg a day 700mg x 4 over a 2 1/2 week period because I had a major flare up and gabapentin was not working It is working a little better I am still having a lot of pain just not as severe droping to your knees in pain anymore just the putting hand to your face pain and I am feeling like i am in zombie land
My doctor said the next medicine to try is trileptal can anyone out there in TN land give me and other idea's should I maybe try another increase in gabapentin and when is it time to just decide to get brain surgry
I can’t answer your med question but I can give you my thoughts on when to consider brain surgery…
It’s important to note that currently there is no cure for TN.
BUT, that being said certain procedures have been found to offer long lasting relief.
BUT, there are no guarantees.
My advice to anyone diagnosed with TN is this;
read as much as you can about TN, you’ll soon see there are no two cases alike. We all share similarities but that’s it. So what works for one doesn’t necessarily work for another.
Knowledge is power. We can learn from each other.
pain control is most important. Have open communication with your prescribing doctor or neurologist. At your appointments discuss how your meds are working for you, know before you leave how to safely increase your dose should you need it. Meds can work for months or years but sometimes they only work at a certain dose for only so long. It can take time to build up to a therapeutic dose.
Ask about side effects, read and know what to expect and what is normal.
Ask about whether or not you need to have blood work done to ensure you are not at toxic levels, for each of us that level is different.
Ask your doctor about what he/she thinks is an adequate amount of time pain free when you can start to reduce your med(s).
( for me my neuro always says 4-6 weeks pain free and then he gives me direction on how to reduce. This should be done to see if you are in remission. No sense taking meds if you don’t need them.)
As an example after 9 months of bilateral TN after first diagnosed, I weaned off my med and had an 8 year remission on right side and 10 year remission on my left side!!
research has shown that TN gets worse over time, it seems to be a general consensus.
So really important to read and learn about other options if the meds no longer work. Sometimes you just need to change or add meds to find relief other times different procedures may be offered to you.
AND this is where I say I think it’s REALLY important to read about every procedure and alternative therapy available to treat TN. BEFORE you are in a pain crisis.
You don’t want to make a decision on treatment out of desperation!!
Know the risks and read of others experiences with ALL the procedures.
Meet with a few neurosurgeons who specialize in TN to consult on your case.
You want the most experienced. Try and talk to patients with TN who have had the procedure with that specific neurosurgeon. Like calling references. So important.
It has been said that the sooner in your course with TN you get an MVD, the better the outcome. Keep that in mind. Although in my case I didn’t know that and when my TN came out of remission it eventually got worse and became med resistant and I had my MVD this past April, 11 years after diagnosis.
Research also shows that mvds don’t have as great an outcome for Type 2 as compared to Type 1, but in my case so far so good.
No compressions ever showed on any of my MRIs over the course of 11 years…and yet I had 3 compressions.
TN is not black and white, there is a lot of grey…inform yourself, advocate for yourself and know your options.
You will know what you’re willing to try after you’ve read all the options.
I hope you’re feeling better and have found some relief.
Wise words from Mimi. The only thing I have to add is that for me personally I had to go to 3600 gabapentin (900 x 4/ day ) and that is very helpful. Also added 75 tramacet at about noon to keep from crashing and now my afternoons are pretty good. Brain eventually figured out how to work on the gabapentin but it took staying with it for a long time.
Nothing works for bad breakthrough pain if I’ve been doing too much. I need to really moderate my days.
I tried trileptal with gabapentin but trileptal is lethal to my system.
I see a NS tomorrow. If I am a good candidate I will go for it. Winter is coming and there is nothing to take for all that cold and damp.