I have been recently diagnosed with TN and I am in constant pain. Sometimes the pain is so horrible I am paralyzed and can only grunt while convulsing. I have been ordered not to work for at least two weeks to see if medication will work. I have no issue in trying to find the right combination of medications so that I can function normally, but how am I supposed to support myself? Does anyone know of some temporary help to get me through this time period? What if I can not go back to work? Everything I read states TN sufferers have a difficult time getting disability....now I am stressing over my pain AND my finances which is just triggering even more pain. HELP!
YIKES! This is a scary ailment asnd during an attack you feel like your life is over... but your nerves will calm down and you will have relief... it took a good week or so before the tegretol worked for me.. during that time I was in an absolute PANIC...which didn't help the pain. If it gets insanely miserable try the ER-- they can give you some IV diluldid that just might work to calm the attack... did the doc give you meds for breathrough pain?? Search around here and see what helped others... I had luck with hydrocodone-- but many people don't... did you get any painkillers?? or only the tegretol?? hope you feel better soon!!!!!
I regeived the hydro to take home, it doesnt work for the breakthrough pain. In the hospital they tried morphine and I still could feel the pain.Only been on the teg for a day and a half so I pray the combination will do the trick.
tacocat said:
YIKES! This is a scary ailment asnd during an attack you feel like your life is over... but your nerves will calm down and you will have relief... it took a good week or so before the tegretol worked for me.. during that time I was in an absolute PANIC...which didn't help the pain. If it gets insanely miserable try the ER-- they can give you some IV diluldid that just might work to calm the attack... did the doc give you meds for breathrough pain?? Search around here and see what helped others... I had luck with hydrocodone-- but many people don't... did you get any painkillers?? or only the tegretol?? hope you feel better soon!!!!!
Oh -- yeah morphine doesn't work for nerve pain....so many docs have never even heard of this ailment-- they don't really know how to treat it in the er... how much tegretol did you start on?? You usally have to increase it every few days or so until you find the right dose... some people have used imitrex or Pregabalin 150mg --for breakthrough pain. You could see if your doc with prescribe one of those. Keep at it until you get relief!!!!!
It is progressive, but there is hope! For possible instant relief,
Call your reg. doc to call in lidocaine patches and lidocaine cream…pick up the cream first…if it works well to help some pain…get the patches. It cost more, but works better.
. If you have pain inside mouth, there is lidocaine mouthwash.
Get the book, from amazon or library…STRIKING BACK by dr ken Casey …our bible here
, talks about all treatment plans, vitamins, stress and procedures.
For later reference, if you ever want surgery…he is near Dearborn MI.
There is info here , steps to get disability…but you will probably get some relief with meds…and it can go in and out of remission…by itself, with meds, or with surgery…but one day at a time.
Read, learn , ask, repeat…and keep stress low!
Hi dannyj,
Tegretol usually takes a little time to kick in…your doctor should have given you a plan on how and when to increase. Therapeutic relief is usually found between 400mg-800mg. You’ll initially feel really tired, drowsy, off balance etc but with time your body adjusts. I remember it took me a week to 10 days before I was able to get back to work after starting Tegretol. After that I was able to work and function normally on 800mg for over two years…then my left side came out of remission ( I have bilateral tn) and became resistant to meds, but that’s another story…
As KC mentioned TN can go into remission as well, after you’ve had relief for 4-6 weeks you and your doctor should discuss how to wean off the meds to see if you’re in a remission. The first time I did this after 9 months with TN I went into a long remission…8 years on my right side and 10 years for my left side!!
I’m on extended release Tegretol which works better for me then the regular version.
Good luck hope the meds kick in soon!
(( hugs )) Mimi
thank you all for the good info. I am on teg, only 200mg and no step up plan....I will call the doctor to get that corrected. Linocaid sounds like the option I need as well. Anything that will give me more than one hour pain free. I think the worse part is to see how your pain affects loved ones.