CMT and Trigemial Neuralgia - Charcot-Marie-Too...

Charcot-Marie-Tooth UK

1,684 members667 posts

CMT and Trigemial Neuralgia

Shazza65 profile image
7 Replies

I have had CMT all of my life and am now 47. I recently developed TN and as my brother also has this condition the doctors are now linking it to CMT after previously saying it wasn't. We are also going for genetic testing soon after all previous tests for the common genes proved negative. Does anyone else have experience of these two conditions together an what treatments have you found helpful? I take large doses of gabapentin but this has affected my ability to walk quite dramatically and have had to stay away from work. Any info would be appreciated

Written by
Shazza65 profile image
Shazza65
To view profiles and participate in discussions please or .
Read more about...
7 Replies
CMTUnitedKindom profile image
CMTUnitedKindomPartner

Hi there

I don't have any specific information about the combination of these two conditions, but I HAVE heard of the combination before.... I doubt whether you'll have come across this lady before, but I do recommend going to chasing-normal.net/main.asp - "Chasing Normal" is written by a lady with CMT and TN as well. You might find it interesting.

Karen

REGreen profile image
REGreen

Dear Shazza65,

Sorry to hear about your extra pain. Trigeminal neuralgia is a real bummer. I had it for a while before being diagnosed with CMT, although the feet and ankles had been a problem for years by that time. I went through the usual route of visits to the dentist and had a tooth out, only to find there was nothing wrong with it- usual for TN sufferers. Eventually the GP diagnosed it, pity he wasn't so hot on CMT, and prescribed Tegretol. This brought it under control in a week and has stopped later attacks quickly. I had no idea it might be linked to CMT. my brother in law also has TN, but fortunately not CMT and he also finds Tegretol effective. Do you have an irritating dry tickly cough? i am wondering if this is connected to CMT.

Do hope you can get some relief soon from the TN.

Best wishes,

RE Green

Shazza65 profile image
Shazza65

Hi, yes I do have a really bad irritating cough that I've had for nearly 30 years. Sometimes I feel like I'm going to choke.

do you know which type of CMT you have?

PhilC profile image
PhilC

My gut feel is that the TN is unrelated to the CMT and is either bad luck or age related.

I have several friends who have suffered from TN and after drug treatment resorted to surgery which has cured it for the time being. The surgery involves the insertion of a teflon sleeve between the main blood vessel and nerve which stops it BUT the sleeve does wear out and only expected to last 10 years.

Primary-Bursar profile image
Primary-Bursar

I also have a dry cough and it always feels as if something is in the back of my throat. I thought it was probably mucas from blocked sinuses. However, having been to see a ENT consultant and having a scan, my sinuses are perfectly clear and no polyps either but sometimes I feel as though I am choking especially when eating and find myself having to leave the table. I also sometimes wake in the night choking and struggling to breath. I asked both the ENT specialist and my neurologist whether this could be linked to my CMT but neither seemed sure. However, my neurologist did some research and said that breathing problems with CMT are rare!

Amanita profile image
Amanita

I have had several episodes of laryngospasm (total inability to breathe in for about 30 seconds or more, followed by dragging in breath with extreme difficulty, which makes a grating sound [stridor] ) over the last few years. It is absolutely terrifying when it happens, and feels as though it is going on for ever. I finally saw an ENT consultant in Sept., and he diagnosed Silent Reflux, assuring me it was NOT CMT-related. It appears to be a kind of acid reflux, and you have to give up fags-n booze (impossible for those of us who don't indulge), tea, coffee, chocolate, butter, cheese,tomatoes, fried food, virtually all fat/oil, hot spices, and acid things.The list goes on. I am still trying to concoct a palatable diet within those ferocious and unkind restrictions, but already have much less gunge at the back of my throat, as well as having lost some spare weight. Too early to know if the laryngospasms have been banished, though.

curlyburli profile image
curlyburli

I choke very easily, even choking on 'spit'. I also cannot breath lying flat.

Not what you're looking for?

You may also like...

CMT and Hearing

Can the team tell me if CMT affects the hearing? For years I have been suffering from tinitus and...
TB5598 profile image

JOINT PROBLEMS and CMT

I have had CMT for most of my adult life but was only diagnosed when I was in my late 40's. I am...

CMT and Muscle Growth

Does anyone else seem to have trouble developing any muscle/improving body composition, even when...

CMT

Hi, im new here! i was diagnosed with CMT 20 years ago. up until now i have coped fairly ok....
niamhwet profile image

CMT and multiple other problems

I have either CMT or a peripheral neuropathy - the neurologist can't seem to make up his mind! He...
Skyman1944 profile image

Moderation team

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.