Hi everyone,
I’ve been in pain for 8 days now. My doc has upped my trileptal dosage 3 separate times as well as added baclofen. Still no relief , my episodes, seizures, attacks, whatever they’re called are every 2-3 minutes . I can’t eat, talk, or really do anything without severe pain. The doc is talking about adding another drug called lyrica. Has anyone here had any luck with it or anything else that may help me? I have typical tn and ms. Any help, or advice is sincerely appreciated.
Hi Annask,
I also have MS with secondary TN. I have had the TN come and go and its never been fun. Some tricks that I have found over the years that helped me have been Steroids and Toradol. The steroids have been used to break the exacerbation. The Toradol has relived the pain in as little as three minutes after being infused. I am on Lyeric as well and it helps quite a bit. Its a bit safer than the Trileptal as well. When I make a appointment with my neurologist the soonest he can see me is two to three months out. I just go to the hospital now and tell them what has worked in the past.(more like my wife tells them as I can't talk)
Erik
Hi Eric
Thank you for your reply. Sadly I’m now on day 10 of pain. I go in to see my neuro’s pa tomorrow and its looking like I’ll be adding lyrica. So it’s good to know its worked for you. At this point I have to say the pain had almost completely incapacitated me. So frustrating!
Hi Annask,
I ended up in the hospital in November as my pain was so bad -- all three branches of the nerve. That's where I finally got diagnosed with MS and where they identified the lesion in my brainstem. The neurologist put me on phenytoin by IV and that took me out of pain quite quickly. Unfortunately, I developed an allergy to it, so had to wean off. I went back on Lyrica and that didn't manage it, so I had a balloon compression rhizotomy on Dec 27. It has taken me out of pain and back to living a bit more normally without meds. I am still emotionally fragile though as there seemed to be more emphasis on having me see a psychiatrist than getting to the real issue which was the pain, the pain, the pain . . .
Jennifer
I'm in the middle of an attack now too. I've battled this for 20 years now and I'm starting to look for surgical options. I tried Lyrica once and can't remember if it wasn't effective for me or I had side effects that I couldn't tolerate. I've taken all sorts of drugs and combinations but the one that works best for me is Tegretol. I also have been taking Baclofen for years.
My sister is looking for a procedure also. We had our first visit with a neurosurgeon last Wednesday and here's what he said "You're between a rock and a hard place". The only thing I would recommend is radiosurgery which has a 50% success rate. There is also a chance it will make the pain worse and it will probably come back. We have a second opinion appointment May 10 with another neurosurgeon to see what he has to say. In the meantime, she is suffering so much and there's nothing we can do.
Dee said:
I'm in the middle of an attack now too. I've battled this for 20 years now and I'm starting to look for surgical options. I tried Lyrica once and can't remember if it wasn't effective for me or I had side effects that I couldn't tolerate. I've taken all sorts of drugs and combinations but the one that works best for me is Tegretol. I also have been taking Baclofen for years.