Don't give up hope Jennifer, you may just need to have a combination of meds, or a higher dosage, or both to help you. Keep working with your doctor. I know it is very frustrating. Hang in there dear. Sometimes, it just takes more time, and the pain can evolve, it did for me. Stay Strong. Min
I was diagnosed by a neurologist just 4 days after my first horrible shocks and put on a low dose of Trileptal. It worked well within a couple of days (had some initial nausea and double vision). I had to up the dose though about every 2-3 weeks when the breakthrough pain became too unbearable. I ended up on 1500mg per day of this drug after a few months and was having "episodes" that felt like "illicit drug trips". A new neurologist changed me to Tegretol XR (extended release) that he said would take care of the "drug dumps" that happened at high doses. I also quickly had to up that dose every couple of weeks over a few months until I was at 1200mg per day spread out to taking it 6 times per day. My side effects were horrible - as a mom, I couldn't not function, couldn't remember anything, got lost driving, etc. I had to take Vicodin on the side here and there just to help me cope with breakthrough pain. After 9 months of this, I had a successful MVD surgery by Dr. Casey who is an expert TN neurosurgeon. That was over 2 years ago and I am still 100% pain free and med free. I know it's no guarantee that the pain will stay away but Dr. Casey told me I have a good chance of remaining pain free for about 17 years and that there is just little research after that point. Also, most drop-off where pain returns happens in year one and year two so I'm happy to have hit the 2 years milestone. I have met a couple of patients who have been pain free after MVD for more than 25 years. My hope is that I remain pain free permanently and if by chance years from now my pain returns, there will be cure waiting for me. I was diagnosed with this awful disease in my 40's (just a few years ago) and at this busy time in my life, raising kids, a husband that travels, a job, etc., I absolutely could not live on the meds and I surely couldn't live with the pain. Best wishes to you, Jennifer. There is always hope. Learn all you can and seek out a expert TN neurosurgeon.
one suggestion i have is that once your dose is levelled out to ask you doctor for slow release tablets. i found i had much better pain coverage on slow release as it eliminates the highs and lows of the meds. currently i take 400mg tegretol am and another 400mg pm.
one suggestion i have is that once your dose is levelled out to ask you doctor for slow release tablets. i found i had much better pain coverage on slow release as it eliminates the highs and lows of the meds. currently i take 400mg tegretol am and another 400mg pm.