trigenimal neuralgia and weak muscles

hello there,do people who have CMT usually suffer with trimenginal neuralgia,waek eyelid muscles,also generalised muscle atrophy thankyou.

[Shazza65]

Hi, yes both my brother and I have trigeminal neuralgia, hemifacial spasm (twitching in the face) and CMT. It is not uncommon but not common enough for most doctors to know there is a connection. Mine is treated with gabapentin and lamotrigine which has had a pretty devastating effect on my mobility. My brother who has had it longer as he is older has had gamma radiation to scar the nerve in the brain. Our Cmt type has not yet been diagnosed although I am 48 and have had it all my life. Hope this helps.

[Hidden in reply to Shazza65]

thanks shazza65,I went to neurologist for this other condition I have as the pysio suspected I had ataxia,nearly had nerve conduction studies,but it never happened,,the anticonvulsants seem to be helping thank you for your message x

[bb123 in reply to Shazza65]

Hi. I just found this post today while googling CMT and hemifacial spasm (HFS). I was diagnosed with HFS in 1987 and CMT in 2009. My father also had HFS and trigeminal neuraligia, and we think he had mild CMT (never diagnosed, and my CMT was diagnosed after he died). My neurologist in the USA said she had heard of an extended family who had both CMT1B and cranial nerve disorders like HFS. Other than that, I have never come across anyone who has both (until I saw your post today). Do you know of any others? Do you know of any research or literature which talks about people who have both conditions? Before my CMT diagnosis, I underwent MVD surgery twice to cure the HFS, but it didn't work. I now think it didn't work because of the CMT. So I am currently receiving Botox injections every 3 months to control the HFS.

[lowther1]

I to have cmt, and continue to have endless nerve problems, not only neuralgia but vertigo as well, told they were not connected that i was just unlucky, gabapentin does help, trying to manage on low dose as i work,and painkillers if it gets bad, also awaiting removal of 2 teeth which they will only do in hosp because of bp problems, wondering if they have an impact on neuralgia but knowone connecting it, too many different people deal with different things and dont connect, need one to oversee really, but we still have to plod on and try and raise awareness, i live in the bottom of cornwall and have been suprised that there is starting to be some recognition.

[Hidden in reply to lowther1]

I have vertigo as well,its extremely debilitating isnt it,my uncle had the same thing,also tinnitus,its horrible ,I feel I cant move with it at times especially when you get it in great waves of profound exhaustion,I feel like I cant move with it at times,wish I could understand what the doctor is telling me about it.I think all this stuff is connected.

[lowther1 in reply to Hidden]

Have you been offered the Eply (mispelt) manouvre it is uncomfortable but works very well, for periods of time.

[Suzy_q in reply to lowther1]

I, too, have CMT and facial spasms. The spasms have been non-stop for about 4 or 5 years. My doctor didn't seem to think gabapentin (not sure of the sp?) Was an option because I still work. What have you found that works?

[lowther1]

I worked and still took 800mg a day it works well.