I'm growing quite DESPERATE here and no one seems to understand the severity of my issue!!
I cannot take the traditional meds, I am not a candidate for surgery since my ATN/Tn is from demyelination, and the baclofen I do have has stopped working. My local neuro will not do anything more to help, and I don't head to Mayo until March.
Thankfully I don't have daily sharp pain, but i do have daily ATN aches and lately the sharp flares are more frequent, hence my attempt at a tegretol trial and nightmare last night. Never again. It actually caused rebound pain.
Is there ANYTHING, besides getting blasted drunk, that I can try????
I really really just want a few doses of narcotics but here in my zone in FL that is a no no now. Docs are no longer rx'ing them.... Not even in acute distress. I feel so alone while I wait on Mayo, locally the healthcare system is crap.
How many consults have you had with different Neurologists or Neurosurgeons?
Just because you’re TN1&2 is caused by demyelination does NOT mean you are NOT a candidate for surgery or other procedures.
Many MS patients with TN have had success with mvd. There are published studies done…just google it. I don’t know you’re entire health situation nor am I a doctor.
But I highly advise you to research and then present it to your doctors/ neuros and ask why not you??
I sure hope you find some answers at the Mayo, in the meantime there has got to be something you can take to help minimize your pain. You are In Pain crisis and NEED help.
Local ER?? A family physician??
Thinking of you, praying you get help! (( hugs)) Mimi xx
Hi. I’m in Florida. Pain doc s are still giving narcotics, as far as I know. Same with the ER. Just more restrictions. I was able to get some from my neuro, but it was limited.
You might want to inquire about a neuro stimulator if surgery or more medication is out of the question. If you have a good acupuncturist in your city, that might be something to try as well. I got a little improvement the very first day and more as I continued to go. Also, have you tried something like Elavil, a tricylc antidepressant? ESP for ATN pain, it can really help.
Hi, I've also had some success with acupuncture and physiotherapy and facial massage (I have ATN combined with bilateral jaw disc dislocation so my face muscles often get tense). Acupucture worked like anaesthetics for me - I found a doctor who specializes in treating TN/ATN and she was able to give me relief for up to 24 hours any time I visited her. Hope you find a working solution to your pain soon!
only thing that worked for me..before carbamazepine..other than getting drunk is tramadol, LOTS of it...that is the only answer i can give you in relation to meds and atypical tn.
I thought and thought on this because my head I swear is not working. Any how have you tried lidocaine creams, gels, or patches? That might numb you enough to give some relief. The other to try is magic mouth wash. This too should numb you, and give relief in pain. Both will need a doctors persciption, on the bright side they can call the prescription into your local pharmacy. I hope you get relief soon and I’m sorry your having such a tough time. Hang in there.
I read your message and also what you say that you cannot take. Each case is different and therefore I tell you what helped for me: As my TN-pain comes only during the night, I end up taking: 3x200 mg Tramadol Retard + 3-450 mg Lyrica (I know...) + 2x2mg Lormetazepam to sleep again until my next attack. After two doses, I feel only some pressure, no more pain until the next night. All this is prescribed by my neurologist (-surgeon as well). No medication in daytime.