I am feeling very hopeless. I have tried tegretol and baclofen and had to go off because of side affects. I am taking lyrica now but it does nothing. I have a bad neck and migraines as well. Anyone else have multiple issues?.I am considering being referred to the MN Mayo clinic for help.
I have Trigeminal Neuralgia along with migraines and cluster headaches (and other non neurological issues). It’s hard to manage them all, but is very possible. The best thing is to find a good neurologist who can manage all of your disorders. It took me a while to find one that is able to find one like that and I’ve noticed a big improvement since. Also look for treatments that may not be among the ones that are in the forefront of everyone’s minds. With multiple neurological issues, there are some treatments that can help several issues at once. Research is key. But a lot of times you have to do this for yourself. I hope this helps, at least to know you’re not alone. Hang in there!
I am so sorry to hear that you are having such troubles, I understand all too well. I have bilateral trigeminal neuralgia, I had MVDs at Johns Hopkins on both sides, they found and addressed compressions but I still have pain (nerve damage?). I have also been diagnosed with geniculate neuralgia in both ears, and occipital neuralgia (both sides of my head). I also have fibromyalgia. I am not able to work anymore due to pain, I am on disability. I go to accupuncture every week which helps with the fibro and sometimes the occipital neuralgia. I get nerve blocks every month from my pain doctor, 2 trigeminal and 2 occipital. I am on gabapentin, cymbalta, carbamazepine, vicodin, and a fentanyl patch. I found a new version of aspercream that has 4% lidocaine which helps the trigeminal a little (any help with TN pain is great).
I just keep trying! I do get frustrated sometimes but do my best to keep trying. I have the best pain doctor one could ask for and my accupuncturist is wonderful as well. After a few different neurologists (some very difficult doctor visits where one even said they can’t help me) I believe I have found a good one.
Just keep trying!!
Thank you for the kind words. I guess I will just keep on pushing through
I have felt hopeless many times too. I too have neck and migraine issues and have tried all sorts of medicines some with no effect but all with side effects. And none that address all my issues. I took Lyrica, Trileptel and tramadol at high doses to get my pain managed...do I have side effects...weight gain, dizziness, forgetfulness and others I can't remember...yes. Do I still have some pain...yes on a scale of 1-10, about a 4 on a good day (like a really bad sinus headache)..do I still have migraines and neck pain yes...those I take other meds for. It is just a mix. I do wish you success in finding your right mix.