Sleep Apnea Diagnosis, was: could be the reason I have been feeling yick..

[Guest guest]

How long did the whole process

take you?

I first saw the pain management doctor in late August. I ended up having

my first sleep study (the diagnostic one) on 9/11 (is this appropriate,

or what?) thanks to the Hurricane Gustav evacuation. It took the doctor

who read the study almost two weeks to get the results to my doctor, then

I had to see the doctor to get the results. I was positive for OSA

(obstructive sleep apnea), so a titration (this is a sleep study with

CPAP) was prescribed. I had this on 10/1, and it took the doctor who read

it another two weeks to read the results. Then I had to see my doctor

again and get a prescription for a machine. This precription was faxed to

the DME (durable medical equipment) company favored by my insurance.

Their respiratory therapist had to go over my sleep study as it turned

out I had something a bit weird which happens to some people. First, I

didn't tolerate CPAP -- constant positive air pressure -- I needed

bilevel, which has a different pressure on inhale and exhale. Second, I

threw 28 Central Apneas (which were not present in the initial study).

Centrals are not caused by an obstruction. Basically, the brain says,

" Oh, she doesn't need to breathe any more.... "

The result of this was that I ended up with a super-fancy machine to cope

with this, the Bipap Auto SV.

How does Sleep Apnea cause more

pain issues?

If the oxygen in your tissues goes below what it ought to be, it can

cause pain. The pain management doctor told me that any time she sees

chronic pain for which there is no overt cause, she has a sleep study

done first, and then considers more esoteric issues only if the sleep

study comes back negative.

Interestingly enough, when in the hospital after my surgery, I had more

pain in my hips than I did from that huge incision! The oximeter kept

going off, too. I did not know enough then to understand that what was

probably happening was that the pain meds were worsening my apnea -- they

worked fine on the incision, but could not touch the oxygen deprivation

related hip pain. They actually made that pain worse.

http://www.semedicalsupply.com/cms-50f.htm is the pulse oximeter I

have since purchased. If you choose to get an oximeter, there are less

expensive ones, but make sure you get a RECORDING pulse oximeter so you

can record while you sleep.

http://www.semedicalsupply.com/cms-60c.htm is another one my fellow

CPAPers have spoken of positively.

Intense to say the

least.

Understatement of the century. Two major health challenges for myself on

top of my uncle's death, a hurricane evacuation, and a major

hospitalization for my mom... gah.

Were you able to try different

types on?

I called the sleep lab where my titration was to be held and asked for an

appointment with their mask specialist, to try on masks, explaining that

I had very bad claustrophobia, and had to find a mask that would work for

me, or the titration would be hopeless. The specialist was amazingly

helpful -- he spent around three hours with me, trying on different masks

under light pressure. Specifically, I tried them on lying down (well

that's the position you're going to be using it in, right?) and with

positive pressure. That was when I also found I couldn't handle single

pressure -- it was very light, but I could not breathe out against

it.

That is incredible as it seems a

significant reduction in pain.

Yes. I've gone from 6-8 doses of my anti-inflammatories (taurine,

pantothenic acid, bromelain, salmon oil, and evening primrose oil) per

day to two, sometimes three. (Three is most likely on days when I've been

on my feet all day, or if something has prevented me from doing my water

therapy.)

> Do I enjoy sleeping with a

mask? No... but the alternative -- like my decision to give up sugar and

starch and go SCD -- is to have irreparable damage done to my joints and

my heart and my lungs.

Wow..

Exactly. Congestive heart failure -- one of the things my mom has -- can

be caused by untreated sleep apnea.

So sorry about mom. How is she

doing these day? How is dad holding up?

Dad is very, very tired. Have I mentioned he's a stubborn German? He's

concerned about finances, and so is continuing to try to take care of Mom

24/7 instead of hiring someone. And it's depressing to see someone you

love slipping slowly away. He was prepared for the physical aspect. But

not for the mental one. Mom is now on an anti-anxiety drug and an

anti-depressant, which seem to be leveling out her moods a bit. AND: Dad

has to have surgery for skin cancer in a couple weeks.

Is sleep apnea genetic at

all?

I think that it is not so much that sleep apnea is genetic, as the

physical structures which predispose one to apnea can be inherited --

things like a small jaw, or a tendency to weak musculature in the throat.

<g> If you happen to play a didgeridoo, it's said to help with

apnea.

I know hyperplasia is not

Cancer. Thank goodness. The surgeon wants my mom to have surgery within 6

weeks. They are very careful with this stuff today. Similar to how they

viewed my colon.

Check.

It is amazing what kind of

lasting imprint a terrible doc can have on us. I remember having a

-horrible- and traumatic pelvic exam by a GI when I was in late teens.

Later I learned GI's shouldn't even be giving pelvics.

Actually, one of the things I have learned from the physical therapist

who is helping me to work on the urinary incontinence issues which

developed after the surgery (not to mention the lymphedema issues) is

that Crohn's, UC, and IBS-D can all cause weakening of the pelvic floor

because those of us with those issues don't have to push the feces out,

so our muscles get weak and lazy. She did do a pelvic exam, but she

stated up front that she was not a gynecologist, and therefore was only

testing the condition of the pelvic floor muscles, not doing an actual

examination.

How interesting. I had no idea

it can work this way.

The body is amazing.

It is, at that.

Did they do the whole Thyroid

panel? Important to get RT3 tested too.

RT3? I know of T3. I'd have to go get my labs... they did the T3 uptake,

the total T4, and the TSH.

I understand.. But did you feel

like the surgery made you a lot more susceptible to being down? I mean

all major surgery takes a toll. I am still dealing with difficulties

myself. I had no idea the surgery would just kick me in the a$$ the way

it did and like totally recalibrate my system. None of my docs really

prepared me- they just wanted me in the OR.

Something which the physical therapist I am working with said kind of

resonated with me. She said that surgeons may be incredibly skilled in

their area of expertise. She herself had the same surgery -- EXACT SAME

SURGERY -- I had eight years ago, with the same oncologist. And she

comments that as much as she admires her, she does not think the

oncologist thinks about after the surgery effects until they crop up.

Some people sail through it without issues. Others have problems. She

noted that part of it is because they do not want to bring up things

which may not happen. Why scare the patient more than they already are?

The problem, then, is dealing with issues when they arise. And this,

regrettably, is not where surgeons shine.

I don't know if it is the surgery itself which has made me more inclined

to being down, or if it's the waiting. Tests every four months, waiting

for the results, hoping that (unlike an acquaintance of mine) they will

be negative again. Dealing with the up and down of the fluid retention --

and the fact that although I am trying to lose weight, I cannot tell if

I've had any success because the fluid retention changes both weight and

measurements. That's pretty depressing, in and of itself. Add to

the fact that I was out of work for eleven months due to the prejudice of

a manager, Mom's illness, and the fact that I'm not making the progress

on my writing that I would like to, and it all adds up.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund