Hi Folks ~
Here is the condensed version of my history of CIDP. In 2003, I couldn’t call the cats into the house for breakfast. My mouth wouldn’t “pucker.” I thought at 42 I had a stroke. I was whisked to the hospital and by the time I had arrived my face was “frozen.” This being Columbus Day weekend, the Neurologist was off duty (small hospital) and they said I likely had Bell’s Palsy and come back in the morning to see the specialist. Next day, the Neurologist said it was a rare case of bi-lateral (both sides of my face) Bell’s Palsy. Sent me home with Prednisone and use a heating pad on my face.
Soon, I began to lose feeling in my feet, arms and hands and began not being able to walk more than 30 feet. But, on the positive side, my facial movement began to return slowly. After weeks of testing (some of those really sucked) I was diagnosed with CIDP. I began IVIG and oral steroids again.
Now, 14 years later, I am still trying to find the perfect mix of medication to deal with my pain. I am fortunate, I can walk without any crutches, stand for a while, drive a vehicle and use my hands to type. My feet have the sunburned feeling all the time and have the sharp “ZINGS” whenever they feel like it. I have the aching, sunburned feeling in my hands mostly every night. My neck has never been good, but it hurts when I drive long distances. But, compared to many of you here, I consider myself lucky.
Medicine I am taking: Topomax 125Mg daily, Cyclobenzaprine 10 Mg & Alprazolam .5 Mg at Bedtime, Medical Marijuana (As needed) That’s it. I feel that I could be taking something better, non-narcotic, to control my pain.
For over a year I have been on Topomax since Gabapentin, Lyrica (and another one ?) way back all gave me weird side effects. I am only using the “flower” of marijuana (smoking) and am researching the different other forms of ingesting marijuana since CIDP was only recently added as an approved disease for legal medical marijuana in my State.
Marijuana does help. I have read so many others here at Ben’s Friends say the same; pain subsides, relaxation causes less burning and “shocks, zings” and in moderate use most would recommend it to others with CIDP.
As for the Topomax and Cyclobenzaprine, I am asking if anyone has had these and maybe gone to a different drug that has helped them better. Is there any success stories from folks reading these forums that know of better drugs to combat the nerve pain that could make us with CIDP more educated when talking with or Dr. about medications.
14 years of this has been a journey. I never gave up hope and came a long way from my first diagnosis. I read all the new posts here and feel each and every one of your frustrations, pains and disappointment. I have been right there with a lot of you.
My longest minutes were watching the IV bottle drip the last few drops of my IVIG so you I could just get the Hell out of that room and go home! Five hours in that chair every day, for six weeks drove me crazy.
Lets all talk about what medications have worked - and not worked - so we can then talk to our doctors and maybe make a few of us here feel better.
Thanks and peace to all here,