At this point, not sure what to do. Saw a neurosurgeon last week per the request of the one who did my gamma knife last year. He said I'm not a candidate for glycerol injections and is referring me to a Pain Clinic here and another neurologist for diagnosis of possible MS?
My current neurologist that I've had for 20 years just up and quit practice. I wasn't informed until I called to ask for refills and make an appointment. I can't get in to see one of his partners until January.
I'm left in excruciating pain that nothing touches and have emailed the neurosurgeon again to see if they can somehow set me up with the Pain Clinic that includes a neurologist. I have already seen a Pain Clinic per my neurologist and they had told me they couldn't help me. I've had rhizotomy at 16 and gamma knife last year.
Feel hopeless today. I have to fight that just from the pain and wondering if it's ever going to stop. I've tried everything to man since I've had this for over 26 years so it's just frustrating when it gets this bad. If it didn't cost so much, I'd go to the ER and just see if there's some kind of shot they could give me? I can't take codeine or hydro or oxycodone which makes me hard to treat.
I'm sorry, Rachel. I've found that really heavy narcotics don't touch TN. You don't say where you are, but get thyself to one of the best neurologists experienced in dealing with TN. You don't say what meds you've already been on, but there are meds like Lyrica that do work (come with side effects) in combo with other/s. My new neurologist at Johns-Hopkins just recommended a different combo of meds that shouldn't have the side effects of Lyrica. Most important is to be sure what exactly you have so it can be treated correctly. Maybe losing old doctor is a blessing if it helps get you to someone who can help you. Good luck. Stay strong.
I'm from Birmingham, AL. The neurologist I was under was really good with my condition. He tried everything. I've been on all of the anti-convulsants, anti-seizure, Neurotin (which lasted for 3 years), Lyrica which has lasted 2 years (has been good except for weight gain). Since I've the condition since I was 14 and am 40 now, I've tried alot of different medicines. The surgery helped best when I was 16. Gamma knife, I was hoping would help last year but only did for a very short term. Not sure why this flare up is so bad and why it feels like my face is burning so bad. I really wish I knew someone down here that specialized in treating TN, but I've searched and have never found anyone. It took 9 different trips to neurologists when I was younger to figure it out then. I hope your new combo works for you. I'm hoping this neurologist somehow can help, even though he specializes in MS and I really don't think I have MS but will get tested like they want me too. The other option was the pain clinic here at UAB, where I work. The one that I was at moved and they also told me that they really couldn't help with my condition which was heartbreaking. I totally get that it's hard to treat. But there's got to be another medicine that can somehow help with this pain. Yes, you are right, narcotics don't work. I can't take most of them. Usually there's always a new medicine that comes out that does for me. Right now, it seems there's nothing left to try that I haven't already that doesn't work anymore. Thank you for your support. It's nice to know that others understand this condition because most of the people I know don't.