My TN is soooo bad today with ache and electric shocks- I cannot swallow, can barely breathe, may head to ER. When I lived in CA I went to the ER twice for TN and they gave me iv dilaudad which helped, but now I live in FL and they are so strict about narcotics here, that once I went for facial contraction and hearing loss with pain from TN and they would not give me any pain meds... I dunno what to do! Has anyone ever been hospitalized for TN? I hear of stories about it, not sure how serious you have to be, but I'd say not being able to swallow is a huge deal. My hubby is going to call my neuro, though she is not trained in TN, hence why she is sending me to Mayo Clinic... So frustrated right now. AND I cannot tolerate the traditional meds so I am at a loss.
Not being able to swallow is a big deal. Go the the er...you never know you just might get a sympathetic doctor...and you have the right not to leave til you get some treatment. Good luck whatever you decide to do and keep us posted
I hope you will come back on and let us know he outcome of all this, it sounds just awful. Not being able to swallow is no fun, dreadful!
i too had a terrific, horrible attack too beginning sunday eve. early monday am......subsided monday midnite, this am, tues am was still in shock and right side face felt beaten and stung but better. yes, i have been admitted after e.r. visits for pain management to hospital two times. i have script for dilaudid to take as needed but iv dilaudid if unbearable. sounds like you need a letter to carry around w/ you from your neurologist with your condition and meds to treat it with. i think mine just progressively gets worse and find it similar to a stage 4 cancer .... in the way of treating it. palliative sedation, palliative pain. 17 yrs and past year and half went from 10 to 20 ....God help us. don't be frustrated. that won't help. u must talk to your dr and have a plan put into place for what to do when episodes come. m.d. friend of mine's father had it long ago and he has explained so much to me along w/ my neurologist......
Hello...
I decided to not go to the ER. I have valium on hand for sleep from a script long ago, but not that even helped. My neurologist here said she will only write for tegretol and since I cannot take that based on other med reactions then she will not give me anything else. The narc laws in FL are SOOOO strict. I really don't even like the rebound headaches from narcotics so I try to avoid them since quitting them. I was on them for five years for chronic pain, but dc'd them in April. However, the TN pain is so bad that I'd gladly take a shot of any narc. I am not sure what to do since I have a neuro that won't listen, an ER that won't treat, and my referral to Mayo won't go through til October. Right now I am thanking God that my pain is not to the point of unconsciousness... Thanks for your replies
i am here. back on. i wish i could help. dr's know the pain involved w/ tn...any type of facial pain. it is touch and go and if you wiki it, your dr knows all of this. i suffered and got thru past 15 yrs without narcotic but had to go on last yr and half ago. sometimes it works, sometimes not. if early and nip in bud it helps or wards off but if full blown, i am in some sort of twilight and i don't know whether it helps but manage to take. they even ordered suppositories b/c of vomitting from occip. neuralgia. i feel so bad for you. i just don't know if i should tell you to sit and talk w/ your neurologist and have a letter on hand for your condition. my letter from my neurologist explains in detail what i have, what is is, the pain it causes, my limitations and dilaudid to treat. to er. the life i live is to have a plan in place for attacks. plan in place and support. can you try for a letter and so forth? what else can you do?
bhamilton320 said:
Hello...
I decided to not go to the ER. I have valium on hand for sleep from a script long ago, but not that even helped. My neurologist here said she will only write for tegretol and since I cannot take that based on other med reactions then she will not give me anything else. The narc laws in FL are SOOOO strict. I really don't even like the rebound headaches from narcotics so I try to avoid them since quitting them. I was on them for five years for chronic pain, but dc'd them in April. However, the TN pain is so bad that I'd gladly take a shot of any narc. I am not sure what to do since I have a neuro that won't listen, an ER that won't treat, and my referral to Mayo won't go through til October. Right now I am thanking God that my pain is not to the point of unconsciousness... Thanks for your replies