Hello everyone. I had a severe attack on my left side where I was diagnosed with tn. I eas given tegretol and three days later ended up in the hospital with cutaneous vasculitis. My immune system was littery blowing out my capillaries and I was bleeding under my skin from head to feet. Is was as scary as the tn attack. I was immediately put on baclofen. I am normally very sensitive to medications (I have fibromyalgia also) so I would just take a half of baclofen when I started having sensitivity and it would stop things. Well little by little I’ve had to take it more often, then start taking it every night. Last week I had an attack and had to take 3 1/2 pills to get it knocked down but it was in contol by the end of the day. This week, another attack, stronger where I had to take extra pills…going on day three. The full daily dose is four pills but even two in one day makes me an idiot. I’m scared about this progression. I’ve seen a neurologist who said if it got worse and stopped being controled by medication we could look at surgical options. To top it all off, my husband has stage 4 lung cancer and I am his caregiver. Yeah, I think stress is a factor…lol! Fortunately, he is in remission right now though there are atill issues from treatment and the fact that his cancer has already spread so remission is temporary. I belong to a caregiver group thats been really helpful but I think I need to make contact with more people who have tn. Especially with this slide I’m in. Anyone had this also?
I am new to this disease and to this group but I have found some wonderful supportive people who are a wealth of knowledge so I do sincerely hope you get some pointers and one thing I have learnt is TN is different for everyone as is the vast amount of medication the doctors use to treat it. Your story really touched me and I hope things improve for you.