MS - pain in face

[Eva202]

I was diagnosed with multiple sclerosis 9 years ago.  I have handled it very well on Avonex.  About three months ago, I woke up in the middle of the night with a weird sensation in my face which became painful and electrical/spasmatic.  It kept happening to me at night so I went to my neurologist and he told me I probably had trigeminal neuralgia (probably related to the MS).  He put me on Carbatrol.  The symptoms went away for about a week, but then came back one night, and it was so bad that I had a panic attack.  My daughter had to take me to the hospital.  This kept happening to me and I eventually ended up spending a whole day in the hospital, had a brain MRI, a spinal tap (to rule out spinal meningitis because I had a bad headache), and other blood tests.  They sent me home and my doctor told me to take Clonazapam for my panic attacks.  I started taking that and he raised the amount of Carbatrol that I should take.  I got better again for about 9 days, then I had an episode.   Then I didn't have one for another 8 days, then I had another episode.  The "episodes" start by waking me up with pain in the center of my chest.  Then, after about 5 minutes, it goes to my face and the chest pain goes away, but the facial pain lasts (every time) for 40 minutes.  Also, my right hand goes numb. The total episode always lasts 45 minutes.  Then I go back to sleep. Since then, I have been having them every night.  I take 800 mg of Carbatrol daily and 200 mg of Clonazapam.  Now my doctor thinks it might be cluster headaches and possibly esophageal spasms.  He wants me to take a drug called Verapamil.  I don't want to take it.  I don't believe what I have is cluster headaches.  The pain in the face is not as bad as I have heard that it is when you have cluster headaches.  I don't know what to do anymore.  I never get more than 4-5 hours of sleep and I'm afraid to go to sleep.  Have you heard of this before or is there anyone else out there who has something similar to this?  I feel like it is in my nervous system.   Please help.

Thanks.  Eva

[sbcemt]

Hey it sounds like you need a second opinion.  Or to try a different anticonvulsant, or a recommended mixture of two or more.  I'm not a doctor, just a fellow TN sufferer.  Good luck.  Keep your head up.. it'll get fixed.

[Eva202]

Please respond to my question.  Thank you.