CMT and Trigemial Neuralgia

[Shazza65]

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

[CMTUnitedKindom Partner]

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]

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]

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]

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]

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]

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]

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