sleep apnea experiences

[Guest guest]

Gretchen: I can't believe you posted that article about sleep apnea. I was

just about to write a post asking if anyone of the group has been diagnosed with

sleep apnea. LOL We must have a psychic connection today.

So, having said that, here's the questions:

Has anyone been diagnosed with sleep apnea?

If you have, what method of treatment is being used, i.e., CPAP, surgical, meds?

If you have and are using a CPAP device, what is the number setting? (mines set

at 13)

If you use a CPAP, do you use a humidifier attachment?

If you've not been seen for sleep apnea, do you have one or more of the

following symptoms/anomalies?:

Unusual snoring - high pitch, short bursts

Aspirate on sputum while sleep causing you to awake choking

You partner notices you stop breathing after snoring and then suddenly begin

breathing

Leg jerk

Dry mouth upon wakening where you need to drink water sooner than later

Awakening, startled, for no apparent reason

No memory of any of the above when waking in the morning to start your day

Thanks in advance for you thoughts. I'm finding it fairly common for HNPP

patients to have sleep apnea with machines set at around 4-5-6. The doctor who

diagnosed my apnea at the VA sleep disorder lab has just been told of my

diagnosis and I haven't heard word one from them. I notified them about a month

ago while ordering CPAP supplies. The lady who runs the lab was really

interested in what I had told her about the diagnosis of HNPP and was going to

discuss it with the doctor (whom I've never met, learned his name, and never

seen what he/she looks like - maybe it's because I was asleep during the testing

- LOL)

Just a side note. Since using the CPAP machine for about 3-years now, I've

noticed a difference in energy when waking - not much - but more than before.

I'm now getting the oxygen I need while sleeping which should, as they've told

me, help prevent serious and life threatening coronary problems.

rQn I

[Guest guest]

I was diagnosed with sleep apnea a few years ago. I stopped breathing 54

times during my sleep session. I had a uvalapalotoplasty and have been doing

great ever since. Cathleen in Arkansas

[Guest guest]

Hi ,

My name is Janet, on your question there, I use oxygen 3 liters for sleep,

seemed I would quit breathing and heart would quit. I was just recently dx with

CMT. I am in the process of going to a MDA clinic to find out what type. Thanks

for your question, hope I've helped you.

Hugs,

Janet

[Guest guest]

Hi Cathleen,

It's so good to see a person from Arkansas.I'm from Little Rock,originally.I was

born and raised in Little Rock,Arkansas.I'm a true blood Razorback Fan. Thanks

for your information,Hugs,

Janet

[Guest guest]

Janet: Are you on oxygen in concert with a CPAP machine or just oxygen?

rQn I

[Guest guest]

Cathleen: Thanks for your response. Was there any consideration at time of

diagnosis to use a CPAP machine? I understand how the surgical procedure works,

I just want to understand why. I guess it's just curiosity.

rQn I

[Guest guest]

,

To answer your question, yes kinda.But after the sleep study test they said I

needed O2 because I am also suffering with COPD & Emphesa.I use to be a smoker.I

haven't smoked for nearly 5 years now, but I still have damage.To answer your

question,The doctors said,in the near future yes I probably will have to use a

Cpap machine.I have a girlfriend that uses one,she has fibromalgia, sever asma

too.It helps her in alot of ways.She says it even helps her anixety and

arthritis, and neuropathy.Ill be glad if they switch me over.Hugs, Janet

I also have 3 leaky valves.I hope this help you.

[Guest guest]

due to the unusal amountof tossing and kicking I do becauzse of CMT my doctor

thought the surgery would bethe best alternative for me. Cathleen

[Guest guest]

Janet: So you know, if you still require oxygen while using a CPAP machine,

there is a connection for the supply hose directly on the mask. I've been

diagnosed with CPOD as well, however, all my breathing test were normal and the

technician who monitored the test with me couldn't believe I was a smoker as the

test result showed no deficits. The diagnosis was based on the lung sounds,

bronchial spasms, and sudden onsets of asthma like symptoms that last less the a

minute. I use QVAR, Albuetrol, and Nasaril. I was given Atravent but found it

to be more hazardous to my breathing than helpful - caused a burning sensation.

Because there is cause to believe I'm having some neuralgia of the sinus after a

CAT scan that initially was called sinusitis, it's now being re-evaluated as it

relates to neuro issue. The Naseril seems to help and is taken two shots in

each nostril twice a day. The QVAR, two puffs in the morning and two before

retiring for bed. The Albuterol is used as needed during the day and usually

just once. All this is very low dose for what was first called CPOD. The jury

is still out as to what's really going on. Just know that it is and we just

don't know why.

rQn I