How to live with TN until sergury

Hello alll I am glad I can type becasue I can't talk...(I did not say I can spell...lol) I woke up with so much pain today. Can someone tell me how they live with the pain, things that can do through out the day...follow a certain diets, excercise...I take the medication but I don't want to just be in bed I want to try and be some what normal...I have a family please advise

Hi Laura, I’m probably not the best one to answer…I have bilateral TN, and up until this year I managed quite well, home, kids, part time work, volunteer etc. I went off work a year ago due to incapacitating vertigo/imbalance.
My TN acted up this past spring and has become resistant to the meds thus far…
So as to your question…
Each day is different for me, I never know if I’ll be in pain crisis or too dizzy to function.
On my worst days, I do nothing, I mean nothing. I cry, I hurt, or I spin. I rely on my daughter (14yrs old) to cook or my husband or we get take out.

On my semi-ok days, I can prep dinner, ( they still have to cook it) and I am able to maybe do some laundry, visit on this board, clean a bathroom, have a friend for coffee etc.
Due to the vertigo I can’t exercise at all ( it’s been a year) I miss the gym, heck I miss walking my dog. I have put on 23lbs this year. It’s discouraging but I have no control.
When I am able, I lift some light weights or I can do some squats ( holding on to counter) but that’s the extent of the exercise.
I eat fairly well when I can eat. I bought a juicer and drink my veges and love it. Recently I’ve had a lot of nausea, due to one of my meds, and so those days my nutrition isn’t very good, ginger ale and dry toast or crackers.

I listen to my body most of all. It decides what I can do. Somedays I can clean half of my house, somedays I can’t. Somedays I can work on small projects, or read a book, somedays I can’t. You get the picture…
Baby steps and really knowing your limitations. Trial and error, and most importantly I really try hard not to be discouraged when things don’t go as planned. It’s hard, but one moment at a time.
Huge ((( hugs ))) to you, I hope you are feeling better, Mimi

I thought I had to TN under control but Its not. The meds were helping but today it sliped up on me, I wish I was at home tuck uder the beds.