RE: Sleep Study or Pilot Study

[Guest guest]

Hi Jan, I love your and Jerry's sense of humour!

For those who are ignoring their sleep problems or not heeding their

doctor's advice I'll tell you my story.

My mother-in-law was diagnosed with Olivopontocerebellar Atrophy (the

cerebellar form of MSA) in 1994 at the age of 49. She had loss of balance

symptoms as early as two years prior to diagnosis. Her symptoms progressed

rapidly and she required the use of a wheelchair by 1996. Her speech was

slurred, swallowing was difficult, fatigue was very pronounced. We noticed

another very strange symptom though... excessively loud gasping and

snoring... and I MEAN LOUD!! The loud gasping is called " respiratory

stridor " and it commonly occurs just after an " apnea event " .. apnea means

you stop breathing temporarily. If this happens alot during the night it

can interrupt the sleep cycle, put strain on the heart and lungs and lead to

extreme fatigue and brain fog during the day. My mother-in-law did not seek

treatment for this symptom despite efforts to convince her of the

importance. I am sure it contributed to her sudden death during sleep in

1998. Had she lived even 4 months longer she would have been around for the

birth of her 4th grandchild... and how she loved her grandchildren!

So in summary...

Sleep apnea is a VERY SERIOUS complication that can be associated with

Multiple System Atrophy. Fortunately this is one symptom that CAN BE

TREATED. Please take care of it.

Love,

Pam

Sleep Study or Pilot Study

My husband also had a sleep study about 3 wks ago with 100 episodes

per hour and O2 drops into the low 80's. He calls the mask his " jet

pilot get-up " and sometimes I'm sure he dreams of flying. Even with

the mask we must bleed in 2L of oxygen to keep level up to high 80's

low 90's. At first he did not want to have anything to do with the C-

Pap (several years ago he was first diagnosed. Since the MSA it has

gotten worse, or maybe a little different would be a better way to

say that). After much " convincing " on my part and lots of research

explaining the downside of apnea he agreed to try. That research

helped a lot in convincing him that this could affect his quality of

his life and the length of his life should he choose to ignore the

study and its results. Our kids also encouraged him to try anything

that would keep him around longer for them and their children. We

still struggle with keeping the mask on all night as he pulls it off

in his sleep some nights but we figure better most of the night than

not at all. Maybe he would agree to try it, wearing it at least

until you fall asleep. I think that's what my husband had in mind

when he first used it. Do you think he was trying to " shut me up " or

was he being kind to himself? Of course, he always fell right to

sleep and I'd be up enjoying the hum of the machine instead of his

snoring, gasping, choking etc. Wish I could tell you some sure way

to make it easier but the mask thing is a big obsticle for them to

get over. Hope your husband is flying his jet soon.

I have friends who are both physicians and they decided they were

waking up tired every day. They decided to have the sleep study done

and both of them are using a C-pap now. Jerry of coursed had to ask

them which one was the pilot and which the co-pilot. They are still

having heated discussions on that topic.

Jan

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[Guest guest]

Greetings Pam!

In my case, some of my apnea is definitely inherited. My grandfather

almost certainly died due to heart failure as a result of the stress of

sleep apnea. He died at about age 65, had been on long term disability,

and snored terribly loudly. This was LONG before sleep apnea was well

understood.

Funny story category - I resisted seeing a doctor regarding this ...

Until I snored so loudly one day that BOTH of my kids woke up screaming.

I sighed and decided to admit that it was more than a little bit of a

problem. Went to my doctor and went through the sleep study rounds.

CPAP is EASY to tolerate in comparison to sleeping poorly. I have used

a CPAP / BiPAP unit for more than 18,000 hours. That's almost 10 years

of sleep with CPAP. Trust me. I would not be here now if I did not use

my unit. (C- stands for Continuous and Bi- stands for BiLevel as it

provides a higher inhalation than exhalation pressure). I used CPAP for

many years before my sleep deteriorated. I went for my third / fourth

(?) sleep study, and the technician discovered very quickly that I slept

better with lowered pressure. And that's just what the numbers showed.

So, a BiPAP unit was prescribed.

Regards,

=jbf=

B. Fisher