Hi, It has been about 5 months since I last posted. I am still trying to get my TN under some kind of control. I have been on different meds, mostly sticking to Topamax 200mg. The neurologist may want to add Baclofen now. I have been to different doctors over the last 7months and they all just want to increase meds and do not offer any other explanations or alternatives. I thought at least I would have more testing done blood work something… One doctor said I should just be happy I don’t have ms and I’m not dying. I’m getting very frustrated since now the pain has spread into the nerve under my eye as well. It was only the maxillary before. I have not been able to touch face at all last two days and thought I was past that months ago. Anyone try Baclofen?
I'm sure you must be frustrated by now!
Put Baclofen in the search box above.
However, I think You may have to get more aggressive with doctors. Are you a good candidate for MVD? Have meds not worked or had too many side effects?
Please consider getting a hold of our "bible" here : ASAP! - you will find a book FULL of treatment options "Striking Back" by Dr. Ken Casey
Grab it on amazon, get it at the library - the faster and the more you learn about TN the many times shortest route to relief!
You need a neurologist that has TN patients and who is ready to go beyond meds if you are.
Several med trials is the best current practice - but there is so much more out there
Have you tried asking for lidocaine patches for your face? Prescription of that helps!
Keep Posting!
Thanks. I do have lidocaine cream I got prescribed in the beginning but no sure if did much.
The patches are WAY more powerful - see if you can get those -- the cream just evaporates!
Maybe they need to change you to a different med. And also, there really isn't much reason for most people to get this dreaded disease. We just have a blood vessel or artery pressing on the trigeminal nerve and aggravating it. IT SUCKS! When it gets bad and meds don't work anymore, then try one of the surgical options available. Me personally, I am planning on going straight for the MVD when I have surgery because it has the highest success rate and I don't want to waste money and time on others that may not work as well or as long. You may need to see a different neuro. And make sure they have a lot of experience with TN.
Thanks for the replies. I am seeing my 3rd doctor (neurologist). They all kinda say same thing raise meds or will try other meds. I did ask about surgeries. They all said same thing that they will try all meds first. I think I am going to try the Cleveland clinic and get someone who specializes in TN.
I just started Baclofen a couple of weeks ago, and have titrated up to a dose of 200mg 4x/ day with Topomax 200 2x/ day (I have actually lowered the dose to 150 mg Baclofen 3x/ day and 150 Topomax 2x/day when I accidentally found out that this worked okay). I also take 75 mg of Amitryptilyn for IBS-D at bedtime, which I have taken for 15 years, long before TN. I have tried 8 meds for TN and the only ones that worked had horrible side effects and absolutely didn’t think this one would work and while the jury is still out it might be helping.
Thanks TL. I might try it. I was just afraid of side effects especially cognitive ones, but at this point anything is better then how I feel.