Spent 7 hours in the er per doctors office advice for them to give me general pain relief advice… Trying to find a job is hard enough. But this ruining my marriage. No understands or really willing to try…
Sounds like you are having a rough time. I know what you are experiencing with the er and doctors and others is a all too common with this monster. But just know that we do understand and are here for you.
Hi Nicholas, so sorry to hear you are having a really rough time of it. You would probably be best help to call your neurologist when a flare up happens. He can instruct you better than ER. What we have is pretty rare and needs to be managed by Neurologist. Sometimes even a general practitioner can get you on the right meds, but you need to be monitored with blood work and such, so best to get a neuro doc. I have had this for 9 years and have been blessed to have family that understands. I am sorry this has affected your marriage. I was controlled with meds until just last fall and 18 days ago had MVD surgery; which I am hoping will give me relief and get me off meds totally. Please know the people on this web all suffer the same and to understand your pain. Try to keep your chin up. Sending good thoughts your way.
Oh This is so hard for you ! Please keep strong
My husband had m v d in October and is pain free and a different man having suffered 15 years
Very sorry to hear how rough this is. I would echo the advice already given; ER really won’t help. This forum is a great resource to investigate wide ranging ideas. There is no one size fits all solution, but keep working at it, and in time you will find solutions that make this condition very livable for you.
Nicholas I am so sorry things are so hard for you right now! It’s amazing how much we all have on our plates. My Dr told me that if you go to the ER, you can tell them to lookoup a treatment that uses the meds you take by mouth. (Something like tegretol or trileptal, klonopin, etc.) He said many Drs in the ER aren’t familiar with TN and they may need some guidance but don’t be afraid to ask. They can look it up just like we can look things up.
Otherwise all I can say is sometimes it takes a while for others to understand how bad the pain is, and I gave my loved ones literature on it, but they still can’t imagine sometimes how bad it is because I “look normal”.
Hang in there, there are bad days but there will be good days too.