Does anyone suffer from sleep apnea?

[HorshamMalc]

Hi, about the time I was diagnosed with CMT 1a (10 years ago) my wife noticed that I stopped breathing for long periods when sleeping. I was referred by my GP to a sleep consultant. He took one look at me and said "I don't believe you have sleep apnea, you're fit and not overweight, you just don't fit the profile". However, on the strength of my wife's observations they agreed to do a sleep study and found that I do in fact have very bad SA. My SP02 (blood oxygen) levels were dropping dangerously low, which over time can lead to heart attacks and strokes if not controlled. I now use a CPAP (constant positive airway pressure) machine (free on the NHS!!) every night and have no more SA problems. I'd really like to know if CMT plays a part in this, as none of the professionals seem to know. There has been some anecdotal evidence on a link between the two published in the USA . Has anyone else experienced this problem?

[John1945]

Hello HorshamMaic....

I have had C.M.T. since my birth (although I did not know that) at the time: C.M.T is an INHERITED NEUROLOGICAL disease which is passed from a Parent, to their Offspring(s):

I reached the age of 16 before my excessively high arches (pes cavus) were surgically reduced by a (very painful) procedure in 1963 called a "Mid-Tarsal-Bone-Wedge-Resection)

In 1993, after complaining about my snoring, and stopping breathing whilst sleeping, I was given a hospital 'overnight' sleep study, which revealed very bad results: It also confirmed that I had a condition called STRIDOR ? i.e. A high-pitched noisy sound occurring during inhalation or exhalation, a sign of respiratory obstruction:

I was then given a Continous Positive Airway Preesure machine ! In the early days my air flow pressures were set manually at 8Lts/per/min, then over the next few years they required to be gradually increased to 10, then 12:. The doctors had never heard of C.M.T. so they would not link it to sleep apnoea: I personally believe that there is link between both conditions, as the muscles that support your throat are "floppy":

Nowadays you can attend a sleep clinic, where the will provide you with a C.P.A.P recording machine for you to take home for 3No. nights to obtain overnight test results: A few years ago, I was called back to Edinburgh's Royal Infirmiry's (Sleep Lab), to receive latest version of a C.P.A.P. machine which now AUTOMATICALLY adjusts your air pressure's to by-pass your tongue,or throat muscles which are obstructing, or blocking your restricted airway passage's:

I fimly beleive that Cmt can effect every muscle in your body, remember that muscles also hold open your throat's airways whilst your are sleeping: If they are weak, they can allow your throat / airways to be obstructed:

PLEASE - PLEASE ! DO NOT TREAT SNORING / SLEEP APNOEA AS A JOKE !

GET YOU TO YOUR G.P. REMIND HIM YOU HAVE CMT TYPE ? : REQUEST THEM TO SEEK FURTHER MEDICAL ADVICE AS YOU, IF LEFT UNTREATED, WILL BE AT SERIOUS RISK OF STROKE / HEART FAILURE ! ! !

[HorshamMalc in reply to John1945]

Hi John

Thanks for the answer. It's interesting to hear from another CMT sufferer with sleep apnea. It supports my theory, I wonder how many more are out there? My father had undiagnosed CMT, type 2 diabetes and was unfit. I don't know if he also had undiagnosed sleep apnea. He had a massive stroke at about my age (59) and was severely brain damaged until he died 10 years later. I keep fit and take my C.P.A.P. very seriously. I have one which can run from the mains or a car battery, so it hasn't stopped me being able to enjoy camping etc. I also keep a regular check on blood oxygen levels overnight with a recording pulse oximeter. One other odd effect this has highlighted is that I have a very low resting heart rate, sub 40 bpm when the norm is 60 plus. It seems to have no detrimental effect on me, and my cardiologist is quite happy about it. Do you, or does anyone else, also have this quirk?

Malc

[KarenNic in reply to John1945]

I had sleep apnea as well (got my mask etc at night), and I agree that it MUST be something to do with CMT.

BUT my apnea was virtually cured by having my tonsils out. Its a horrific op as an adult but I feel like a completely new person without them, so might be worth talking to your GP about it.

[lowther1]

I have cmt type 1 and have been recently diagnosed with high blood pressure, and because l have a paralysed diaphragm, l have yet to have another sleep study done, also i have restless legs and through myself around in my sleep, l wake up completely wiped out, Doc thinks my oxygen levels may be falling in the night, l too may have to have a c.p.a.p machine, How does this impact on your life travelling abroad etc,

[HorshamMalc in reply to lowther1]

Hi Lowther1

You really do need to get your SP02 blood oxygen levels checked, it's very dangerous if they regularly drop too low. As for using a CPAP machine - you get used to it, like everything else. It's a fag at first having to carry the machine around and wear a nose mask, but you do get used to it after a while. I'm very comfortable with mine and often forget I've got it on, I've been known to jump out of bed still attached! The machines are not that big these days and mine will run on 12V if there's no mains supply, when I'm camping for instance. One trick I've learned when staying in hotels is to carry a mains extension lead, as there isn't always a socket near the bed.

My advice is get your oxygen levels checked and don't worry too much about the CPAP. If you need one, you'll adapt to it, and hopefully be rewarded with a good night's sleep!

[John1945]

Hello lowther1....

Your C.P.A.P machine will work anywhere in the world, as It has an auto adjustable voltage inputs to suit the particular country you are visiting:

Now our border/airport security controls are well aware of this device:

Personally I always pack my C.P.A.P machine in my HOLD BAGGAGE:

Travel the world / spread the news about this fantastic device designed, and produced by a Professor Sullivan, in Australia: Massive strides, and morerecognition of sleeping abnormalities are now being taken more seriously by health professionals !

Best of luck....

John 1945....

Glasgow....

[curlyburli]

I had a sleep study which confirmed I had sleep apneoa I had severe headaches when I woke. I have got around it by raising my mattress, head end.

[platespinner]

A family in France with CMT was found to have members with sleep apnoea.

Why might this be? Many of us find exercise difficult, find ourselves becoming fatigued more quickly as we grow older, and many of us will be overweight, as are many of those without CMT,- though many of us in the support group which I attend do not seem to be any more overweight than the general population. Some of us will have a kyphoscoliosis or twisted back. Many of us develop a characteristic stance as we get older, I have often wondered whether this might affect waist size and neck size, and we tend to slump when sitting, which can lead to "flaring" of the lower ribs. Personally, I would like to see a formal study to see whether the whole cluster of ailments associated with being obverweight, diabetes, gastro-oesophageal reflux, etc etc. is more common in those with CMT as we age, including whether standard measures such as BMI and waist size accurately reflect how much excess core body fat we actually have. Many of us have shorter arms and legs than the general population which is used to calculate the BMI. Some of us have a lower core body temperature so possibly reducing our metabolic rate? I agree that sleep apnoea needs to be taken very seriously, my brother who may have CMT but will not get the test done has serious sleep apnoea, which has nearly killed him more than once and says his life has been transformed since starting CPAP support at night. Might this be a sensible subject for a poll or series of polls? We probably cannot perform a properly conducted survey to give statistically and scientifically valid results but it could be useful as a prompt, particularly as there is a small project in progress to see which genes may be associated with more severe clinical features of CMT in patients with CMT1A. That study has been developed because we are so variable in how badly we are affected.

[beachwine]

I was just diagnosed a few months ago with CMT. But before that I was seeing a pulmonologist because of periods of breathlessness. Just walking to the car and I would be gasping for air. He recommended a sleep apnea test. I'm tall and relatively thin so I didn't think I fit the profile for apnea but I took the test. When the results came back my AHI was in the severe numbers. The doctor explained that the level of pain I was in was probably what was stopping my breathing so many times. I now sleep with a CPAP machine which I love. I can't imagine going to sleep without it. I wake now fully rested and without morning headaches. Don't be afraid to have the sleep study. It might just be what saves your life.

[HorshamMalc]

Hi beachwine, it appears that this post that I started six years ago has come full-circle! I'm now 65 and pleased to say I haven't really degraded much, if at all, from when I was 59. I weigh the same, have plenty of energy and still work full time. I keep fit in the gym and by cycling which is one sport you can do quite successfully with CMT. I cycled from Lands End to John O' Groats in 2014 and do at least one long tour (600 to 1000 miles) each year. I take my CPAP wherever I go, except when cycle touring (it's too impractical to carry), as I miss it so much if I have to sleep without it. I believe it not only helps me sleep but also keeps me well. I used to regularly have heavy colds until I got the CPAP, since then I never get more than a sniffle!

[Amanita]

Wonderful to read such a positive post, Malc,

Keep it up !

[MommaWheels]

I have had CMT all my life and always had trouble sleeping. I was diagnosed with sleep Apnea but they said it was very mild and I didn’t need a CPAP. I was feeling extremely groggy in the mornings and having head aches and feeling sick to my stomach. I tolerated it for a while and then one day almost fell asleep at work and realized I had to do something. I went to a new pulmonologist for more testing and they discovered I was poisoning myself with my own carbon dioxide. My oxygen levels were going so low at night that my body was starting to shut down. They said it was more of an issue with a paralyzed diaphragm then typical sleep apnea. I now use a Triology non invasive ventilator to sleep. It took me a while to get used to the mask and to not resent having to take the machine with me when I travel. I’ve been using it for almost 6 months now and it has made a world of difference. I would agree with the previous posts - if you snore, wake up groggy or have trouble with daytime sleepiness- go get checked.

[GrannyMaz]

Hi mate, I have sleep apnoea, caused by my phrenic nerve being affected by CMT, this causes the diaphragm to atrophy , so it's definitely something you need to do a sleep study for... if this is the case then you will need a Bipap, NOT a Cpap as the Bipap allows you to breathe out better... here's some reading matter for it .. hnf-cure.org/living-with-cm... ... also cmtausa.org/living-with-cmt...