Breathing problems

[Guest guest]

Gretchen,

Thank you! Actually we live in Denver, so always at a high elevation, though he

doesn't seem to be worse when we go up higher, i.e. skiing in the mountains or

climbing mountains? so..I guess we will have to wait and see w/ further testing

if it is related?

[Guest guest]

Hi ,

Some months back now I had a few problems when I was waking up in the mornings.

I originally thought it was the Citalopram tablets I was taking at the time.

Anyway, I would wake up and my heart would be racing and I had trouble

breathing which was pretty scary at the time.

I recently had a monitor fitted to me to see if I had a problem with my heart.

Well, I've had further tests and they found my heart to be in A1 condition.

Maybe I have a similar problem because I have on many ccasions woken up with

headaches. Most of the time I'm ok, but I do get breathless alot of the time as

well.

Michdoft@... wrote: Hello,

Does anyone know about CMT and breathing problems? From what we've read on the

internet, it sounds like it is very rare to have breathing problems, only in

severe CMT where the phrenic nerve is impacted?

My husband has type 1, he is 35, symptoms have been pretty mild. He doesn't

have any pain, has some difficulty w/ balance, but overall is very active,

climbs, bikes, runs, etc, is in very good resperatory and physical shape.

However, in June he started having trouble breathing from time to time. The

doc (gp) said it was likely acid reflux or allergies. He's tried treatment for

both to no avail. He was referred to pulm. specialist and they said it could

possibly related to CMT but they don't really know, they are sending him for

further testing. Just wondering if anyone has had this experience or knows

anything about it?

Thanks!

[Guest guest]

Hi :

Yes I do have breathing problems on exertion. I could get winded walking up

stairs, carrying a heavy weight, and of course shovelling snow. (the joys of

Canada in winter).

I had every test done on my heart. I did have an artery that was 80%

blocked, but I did not feel any better after the angioplasty. My heart is fine.

I had extensive pullmonary tests done - CT Scan of lungs, breathing tests called

spirometry, and sleep apnea. All was great - no problems.

Needing to know what was happening I had my physiatrist arranged to perform EMG

amd NCV done on my phrenic nerve and diaphragm. This did indeed show the phrenic

nerve was involved in my CMT, and that my diaphragm was affected.The nerve

conduction velocity tests on the diaphragm need to done carefully so they do not

puncture your lungs with the needles used.

In any event, my shortness of breath is caused by my CMT. I began using a CPAP

machine at night to allow my diaphragm muscle to rest at night, and I am indeed

a new man, especially for the first 8 - 10 hours each day.

It's incredible. I purchased the Res-Med machine and mask. Our province covered

$760 right off the top, and I had to pay $260 extra for the machine and $250.

for the mask. I was reimbursed the $510 through extended health care insurance.

This had been a great machine and has improved the quality of life. I still

can't shovel snow very well, but I bought a new snowblower for that.

Regards,

dgbekkingham@...

[Guest guest]

I use a v-pap for night breathing. I have more difficulty breathing in high

altitudes, full stomach, under stress, walking, and when I drink carbonated

drinks. The carbonation forces carbon dioxide into the cells which forces the

oxygen out. The worse I have got... the more I see the damaging results from

pop.

Kay

[Guest guest]

Hi ,

Glad to hear that the CPAP has helped you so much. How long did it take you to

adjust to sleeping with the machine? What type of mask do you use?

I have been trying for over 6 months to use the CPAP ( I hate it). But I know I

really need it. My biggest problem is finding a mask to fit comfortably. I

think you are from Canada? Maybe I could talk to you on the phone about your

experience with this. If you want to provide your phone number I would be happy

to call or I can give you mine. Hope to hear from you.

Warm Regards,

[Guest guest]

Hi :

It took me about 6 weeks to get used to the machine and mask. I had to buy the

mask initially and use a loaner machine for a month to determine if I could

adapt to a CPAP. The machine was not the type I would get if I were able to

adapt, but the mask I chose was called the Mirage Activa Nasal Mask by ResMed. I

was able to try different masks on for comfort in the store, but once I decided

on the one I wanted it cost me $250. and I could not return the mask for

sanitary reasons.

I found the Mirage Activa Nasal Mask was comfortable and it easy to

dismantle for cleaning. I found that CPAP did help me at which time I was given

a script to buy a machine. I bought the ResMed S8 Escape System. This machine is

so quiet it does not bother me or at night, and is a light

sleeper. I can sleep through anything. This machine also has an integrated

humidifier which reduces dry nasal passages.

I used a company called VitalAire out of Owen Sound to buy my machine and mask.

Yes I am from Port Elgin ON in Canada. If I remember correctly you are from the

Mississaug, Oakville or Burlington area? I lived in town for 20 years

before moving to Port Elgin in 2000. Feel free to call me at (519)832-3225. We

can share our experience with each other.

Kindest regards,

Beckingham

dgbeckingham@...

[Guest guest]

,

Last year about this time, I went to the emergency room because my

vision became blurry. The ER nurse checked my Oxygen level and

noted that it was too low. She put me on Oxygen and I immediately

felt better. The Doctors then sent me through testing hell,

including CT scans of my brain and lungs.

After being in the ER for most of the day, the ER docs called a

pulminologist (lung doctor) at the request of my regular doctor.

I baffled the lung doc because I lacked O2 only when I was resting.

When I was walking or exercising my O2 levels were fine. He told me

that he didn't think that CMT was the cause. I talked to my CMT doc

and she told me that the only way to determine if CMT were the

cause, they would have to eliminate every other possible cause.

What I learned is that this type of problem, lack of O2 only when

resting is so rare that even the lung doc had not seen it before,

and that the CMT Docs believe that CMT only causes this problem

rarely and only in the most extreme cases.

I am not an extreme case. I still suspect that this is one area

that is unexplored in CMT, and that my problem is a direct result of

CMT.

I see my CMT doc tomorrow. I am going to ask again and probably ask

for an EMG on the diaphram nerve. I am also going to ask her to do

oxymeter tests on all her CMT patients and see what the results are.

This could be an interesting and cheap test to see if this is more

common than not.

Mike

[Guest guest]

I got my sleep study test results today and I have severe sleep apnea.I

won't go into all the details but tomorrow I am getting my CPAP machine. Luckily

my insurance covers it in full. I will say that after hearing the results I'm

very thankful that I do wakeup every morning.

I know my husband will sleep better once my very loud snoring gets under

control.

Barb