I’m brand new to this wonderful site. Here’s my story:
I was diagnosed after a long battle of figuring out what this horrible pain was when I was 19 years old. Since then I have been to two neurologists. My first one got me an MRI and ruled out MS and Tumor possibility. He told me it was likely that I had a blood vessel or artery pressing on the nerve. He prescribed me carbamazepine 200 mg and sent me on my way. I took them for a week and my attacks DISAPPEARED! I thought I was cured … I (unknowingly) went into remission for almost 2 years. It hit me again in February of 2015, at work. I had to be sent home because I couldn’t go a minute without an attack. I started taking the old prescription for tegretol and made a follow up with my neurologist… and he was booked for 3 months! Well, before getting to see him again…I went into my second remission… this year around late January I starting having tinges and by the beginning of February I was having extreme full blown attacks again. I made it a point to see a NEW neurologist… and she again, gave me medication but it wasn’t what I had before … this was carbatrol carbamazepine CAPSULES not tegretol carbamazepine TABLETS. I didn’t question it and I took exactly how it was directed. It relieved most of my pain after about a week so I continued to up the dose as advised and then I had A TERRIBLE reaction to this medication. Fever, chills, broke out into sores in my mouth; awful. So I made an emergency appointment with my neurologists assistant (my neurologist was on vacation) she told me to TAPER IMMEDIATELY and gave me a prescription for baclofen and klonopin. I am currently weening off the carbatrol and taking the baclofen and klonopin …and unsure of what to do next. I’m hoping this group can help me cope and give some answers. I am only 23 and I just want my life back.
I want the MVD surgery so badly. I am in the process of looking for a neurosurgeon that accepts my insurance to do the procedure. My insurance is Anthem Blue Cross/ Blue Shield. In my desperate searches online I have discovered the Cleveland Clinic, in Ohio. I live about 3 hours away. On their website there’s a doctor that claims he does the surgery I need…and accepts my insurance. Does anyone have any MVD expieriences with the Cleveland clinic in Ohio? I am so distraught and dealing with terrible twinges every day I’m tapering from this awful carbatrol. I need some help. Anything
Here’s the link to the doctor I found on the Cleveland Clinic Website: http://my.clevelandclinic.org/staff/7277-andre-machado#reviews