I'm feeling very discouraged today. Now I'm on no medication as I've tried 3 already. Neurontin doesn't work. Tegretol gives me crazy bad vertigo. I kept hoping that the spinning room would stop but after several months of trying I can't put up with the vertigo at all. Trileptal gave me a severe headache that kept getting worse with each dose, hot flashes, insomnia, and unable to eat so that is a no go. It made me so sick that I couldn't enjoy the dungeness crabs my parents brought back from Seattle and I love crabs. I'm waiting on the neurologist but he said that if I fail on 3 or more medications he may have to refer me to neurosurgery. There are other medications we can try but very few as some of the ones that are left I've had reactions to for my fibromyalgia/migraines in the past. I really don't want surgery. From what I read, it isn't necessarily effective for trauma induced TN. All I want to do is cry but that makes it hurt worse. I was chewing food today and it may as well have been an ice pick through my upper and lower teeth. :'(
Hi Heather, thank you. Yes, I have the book and am looking through it. I can't seem to concentrate on reading very much with the pain. I'm back on the Tegretol at a lower dose since it at least cut the pain. I just can't increase it to a level that will really help because it makes me so sick. My neuro thinks I might be a candidate for Cyber Knife so I'm waiting for the referral to the neurosurgeon. Being that it is Kaiser Permanente I'm not sure how hard it is to get the referral approved. They approved the MRI with no problem back in February. I sent the neuro an email asking about Alpha Stim and stating my concerns about the efficacy of the Cyber Knife.
So sorry to hear about your broken tooth. I can relate, I had a fractured tooth in January and the root canal triggered this horrible episode of TN that doesn't want to quit. I dread the dentist these days.
Hi Kathy O. My name is Julie. I can certainly relate to the problems with medications. I have tried 10 different kinds, plus IV steroids, acupuncture, physical therapy, chiropractic care, and even an unsuccessful attempt with Stereotactic Radiation surgery at the Mayo clinic in Phoenix. Luckily, I have an awesome neurologist and we aren’t giving up yet. Yesterday I had a trigger point injection so we will see if that works! I have been dealing with TN everyday since 9/10 with only a 3 week hiatus after the first IV steroid. I found a combination of meds that cut the intensity of pain but was so dizzy I could hardly function. The day I about made my husband fall down in the airport was the final clincher on those meds.
I am trying to stay hopeful with this latest injection. I think sometimes, or more like a lot of the time, the never ending pursuit for pain relief is as bad as the pain itself. Well, almost I said. Its impossible to explain to others what the pain is really like.
I have not heard of Alpha stim you referenced. I will look it up. I am not a candidate for gamma knife since I had the radiation. My doctor at Mayo said that would have a high likelihood of leaving me with a painful blindness. I also realize that my MS complicates all of this.
I wish you all the success in the world with any option you choose. I’m here if you need support!
Hi Julie. You are right that the pursuit of pain relief can be almost as bad as the pain itself. I am now on 400 mg Tegretol ER twice daily and 10 mg Baclofen 3 times daily to see if that helps. I can handle this dose of Tegretol but not any higher. A few nights ago, when I wasn't on any medicine, I started having the electric shocks in my right cheek. Up until now it has only been in the left side of my face. Sorry to hear about the MS. I have fibromyalgia and MS was one of the things that they had to rule out.