Breathing and cmt

[Juliej51]

Does anyone else have problems catching their breath,it's worse when I take a deep breath and worse when lying down.also causes me to cough alot too.doctors not done anything, I have cmt

[Buzzybee21]

I have CMT1a have had problems with breathing at night in last few months . I just wake up and feel I can’t breathe . I am due to see a respiratory consultant next month , and a sleep study was mentioned by GP. I now sleep slightly elevated - lots of pillows and a sleep block I bought from Amazon. The GP initially refused to accept breathing problems are associated with CMT but fortunately I had copy of report from CMT A ( cmt America ) which outlines known breathing problems with CMT.

Hope you manage to get some help with your breathing problems .

[Juliej51 in reply to Buzzybee21]

Thank you for the advice 😁

[curlyburli in reply to Buzzybee21]

I too sleep elevated head end. Much better.

[Paddy201 in reply to Buzzybee21]

Hi buzz bee, don't suppose you have a copy of that paper or where I can get hold of it. Thanks Nick xx

[Buzzybee21 in reply to Paddy201]

Hi,

I’m not able to attach report via this app.Best way is to google ‘cmta summer 2018 report’ and there is a PDF document there that you can download. Hope you find it useful.

[beachwine]

Yes, your breathing is affected by CMT. CMT affects your long nerves. Those going to your legs & feet, your arms & hands and your phrenic nerve going to your diaphragm. I had a sleep study and was surprised at how many times during the night I stopped breathing for periods of time. Are you tired during the day? That's usually a sign you are not getting enough sleep. I used to be gasping for air just from walking across the room. I was put on a CPAP machine and was waking up with morning headaches. My doctor changed me to a night time ventilator. I sleep great now & no morning headaches or tiredness. Talk to your doctor about a sleep study. Good luck to you in your CMT fight.

[Juliej51 in reply to beachwine]

Thank you for the advice

[GrannyMaz]

Yes i have breathing problems because of CMT, it can affect you phrenic nerve and therefore your diaphragm, you go get a sleep study done, and ask for a Bipap not a Cpap, because if it's your phrenic nerve you wont be able to breathe out against the air pressure of a Cpap... a Bipap allows the air pressure to back off on the out breath, hope that helps

[Juliej51 in reply to GrannyMaz]

Thank you

[curlyburli]

Yep. Cannot breath lying flat. Seen respiratory consultant, had lung function test. Sleep studies which showed mild sleep apnea. O2 satuation is low at 96/97%. .

[Hidden]

I have lots of trouble breathing. It’s worse in the morning and always have a very bad headache.