Newbie with Severe Apnea has some preguntas

[Regnad]

Hi all,
I just got diagnosed with sleep apnea and had some questions.
Here is the information I got from my sleep study done in Evanston Northwestern Hospital:

w/o CPAP:
Recording Time: 127 Minutes
Sleep Time: 47 Minutes
Sleep Latency: 46m
REM: n/a
Sleep Efficiency: 35.7%
Total Apnea: 8
Apnea Index: 10.67
Hypopnea: 132
Hypopnea Index:176
Time below 80% O2: 0m
Lowest O2 Sat: 80%
Longest Apnea: 12.3"
Respiratory Event Index: 186.67

Total # leg movements: 74
Leg movements w/ Arousals: 4
Other Arousals: 301
Leg Movement Index: 19.2
Leg Movement Arousal: 1
Other Arousal Index: 78
*Notes: After 45m of sleep they came in and put a mask on me.


With CPAP (actually a BiPap)
Recording Time: 259 Minutes
Sleep Time: 186.5 Minutes
Sleep Latency: 16m
REM: n/a
Sleep Efficiency: 72%
Total Apnea: 13
Apnea Index: 4.18
Hypopnea: (not recorded) ???
Hypopnea Index:44.4
Time below 80% O2: 0m
Lowest O2 Sat: 84%
Longest Apnea: 24.4"
Respiratory Event Index: 48.58

Lastly: Heart rate is listed as 92. Heart Rhythm was normal and sinus. No EEG abnormalities.

Quick background: 31 years old. Very heavy (though have ballooned up in last few years). Apnea has probably been for at LEAST 15 years, got very bad maybe 8-9 years ago, and maybe 4-5 years ago it's gotten to the point where I'm at now. Always have had trouble falling asleep. 2 hours when younger - no I'm so tired it usually takes 30-60 minutes. Still, can end up being unable to sleep, no matter how _exhausted_ I am. It's like a light switch; when it gets flicked I know sleep is forthcoming.
Used to sleep quite well (so far as I was concerned). Then, maybe 15 years ago it all changed (in very short order). Stopped dreaming, woke up with painful joints/muscles (especially right elbow, which felt like it was in a vise). Since then sleep has gotten progressively worse, with myriad and often revolving symptoms. I've been through my share of matrasses...

Other medical: had a mild heart attack 2 years ago (only went in because I had a severe reaction to penicillin). 3 months later I had a prolonged arrythmia (something like 180+ beats per min - actually I've had them as long as I can remember, but they only last 1-10 minutes at max). Event lasted 3 hours (my ticker can't be THAT bad seeing as how I made it through that). Last January they did a cardiac ablation (on the Bundle of Kent I believe) - took 8 hours and 18 burns, but it seems they got it. I was awake for the whole thing

So, I was going to a schlock Doc who ended up (progressively) stacking medications until it got to 200mg Hyzaar, 10mg Norvasc and 300mg Metoprolol (Metoprolol was at 400 mg for the 2 months between the 2nd heart attack and the surgery). In fact, about a year ago I passed some threshold and started getting tremors (including falling down), unable to walk 1/2 a block and severely blurred vision. Doc just prescribed more medicine (as my BP was still sky high). Eventually I stopped going to him (or anyone else) and stopped doing... much of anything (hmm... I drove from Chicago to Ft. Lauderdale twice during that period though, solo).

I think I was getting near the end but my parents insisted on my going to their doctor. Right away he told me that my bp was being taken incorrectly (my upper arm is no good... he does it on my forearm. Actually, the cardiologist did that too, but never told me why...). My BP was 60 over unreadable. Since that time (Feb 15th) he's cut me down to 200mg of metoprolol (which he just halved again today). BP had rebounded slightly (to 96/50) but today it was back to 60 over n/a. He told me back when he started that this was very probable (a yo-yo effect).

He also diagnosed chronic gout (uhm... 15+ years untreated (and probably as many kidney stones), gluten allergy and the apnea. Oh, and the one thing which I had been previously diagnosed with: humongoid tonsils. Every doctor I've ever seen has said "gee whiz, they're huge." and done nothing about them. This one says he can fit a pencil in the hole (had my dentist confirm that) and insists they gotta come out yesterday (but I need a BP 1st).

OK! Thanks for reading! That was the short-form history, dontcha know... Now to my questions.

Both the sleep study Doc and my GP seem to think my apnea is some kinda record breaker (relatively speaking). I've done a bit of looking: 40+ index seems to be 'severe.' So what;s 187?

Any idea on the leg movement data? It's always bothered me, though it seems the least of my concerns currently.

I'm out of pocket currently (ol' Doc calls me Mr. Medicare Archetypical though) but I forked out $1300 (I think) for the Bipap Auto (I need a 16/14 setting fyi). Hopefully I made a good purchase... the hospital gave me a mirage activa mask (with active cell). SO... any suggestions on usage, settings, etc? I'm a geek and not shy about such things I didn't buy the software (with what money?) - any standalone proggies out there?

Well, it's 3 am... a few more hours and I may pass out. Machine is getting here Friday (I hope) and I'm kinda counting on it helping (I'm a tank, but I'm running outta petrol).

Open to any (constrictive) suggestions or comments!

[dsm]

You have done well to get one of these machines. They offer a wide range of flexibility & there are plenty of others with one to help you come to grips with the best features.

One 1st thing is to set a limit to your AUTO range. I will suggest 3 below & 3 above your titration setting but others already with this model may want to add further suggestions.

What is interesting is your hypopnea index.

Your leg movement index suggests you could run a marathon in your sleep

Your heart rate shows a tad on the high side.

Good luck

You are in good company here

DSM

[Regnad]

Been meaning to reply...
Thanks for the response!
Have had the machine for 1 week to the day. Because of some home troubles (Dog ran away (got him back, they lopped his special purpose off; also, my brother got diagnosed w/ chronic cluster headaches) I hadn't been sleeping too well ( 4 hours a night, average). Still infinitely better than 12 hours w/o machine.
I switched to a mirage activa (?) ff mask. Found it much better than the nose one. It has the standard pillow but I think I need a large one (got alot of leaks last night, but nothing major I think).Speaking of which, if anyone has a copy of the encore pro software and wants to help an out-of-pocket (for now) apnea dude who just plunked down $1300 on his machine, drop me a line
So, on to the questions:
Was told my tonsils are humongous (see above) and my sleep will only get so much better until they come out. Sound right? I noticed that my apneas stayed the same during the study (unlike the hypopneas, which virtually disappeared from 180 per hour); sound like the tonsils are going to help after they go bye bye?
My brother has severe apnea as well, which aggravate his cluster headaches and vice versa. Apparently he has a huge problem breathing out with the mask on and essentially has stopped using the machine (unknown to everyone else). When I got my machine I found out and tried to help out.
Here's the gist:
He's insured (good insurance, as I understand it).
His nasal mask wasn't good, so he tried another which worked out (good...)
His machine is ghetto - looked like Fisher-Price made it. We're going to get another...
Here's the important part... I'm 16/14 (with bi-flex, ramping and auto titration). His machine, from what I could tell, only has 'auto on' as a bell and whistle. From what I could tell, he has a 4 cfm (dunno if it's a cpap or bipap/vpap or other). I personally had a bit of trouble exhaling w/ his setup.
He tried my machine at full blast (16/14) and fond it much easier to breath out (that was with flex setting of 3...).

I've told him to call the neurologist and try to get stuff sorted out. My feeling is he needs a machine with ramping and probably flex; auto wouldn't hurt and not sure if he already has or needs vpap/bipap or other technology.

Any pointers for him would be appreciated; how to deal with the neurologist or DME especially. I also am pushing for respironics as the manufacturer, as I have that and plan on getting the software (one way or the other)... unless our internist already has the stuff.

I appreciate the help; quite frankly I can't focus overly long on things, and don't want to have to try to hunt down the ingo and collate it myself.

Also, my right eye ended up 'going bad' because of the apneas.... lid droops and I went from being slightly nearsighted in it to having everything go badly blurry at any distance. I hope it repairs itself! Losing depth perception SUCKS (I'm now at the point... click... wtf? point... click... ah. phase... I feel a bit like Robocop from the 1st movie re-calibrating his sights by shooting at baby food).

Thanks again! On the road to recovery, but the doctors said it's gonna be awhile

[ozij]

Was told my tonsils are humongous (see above) and my sleep will only get so much better until they come out. Sound right?

Sounds very right to me.
It's said to be a painful operation in adults, but with humongous tonsils blocking your airways, your incoming pressure has too much work to do.

Clearing that obstruction should give your treatment a better chance of success.


O.

[BNLfan]

Hi Regnad!

I am by no means an expert when it comes to OSA, although I would suspect that your brother would benefit from a bilevel machine and/or c-flex since he cannot tolerate breathing out against the pressure.

I agree that he should see his neurologist because the untreated OSA could likely make his cluster headaches worse. Getting treated for the OSA might not cure his headaches, but would be a good step in the right direction. It could help to reduce the frequency and/or the intensity of his headaches.

I am concerned about your droopy eyelid and blurry vision. I would strongly suggest that you see an ophthalmologist ASAP, especially if you also have any double vision or different pupil sizes.

There are many causes for droopy eyelids and blurry vision. It could be something serious such as a tumor or neurological problem or something as mild as an allergic reaction causing your eyelid to swell (droop). It could also be a side effect of medication, especially the selective serotonin reuptake inhibitors (SSRIs) used for treating depression: Prozac, Paxil, Zoloft, etc. Synthroid medication or thyroid problems can also cause eyelid and vision problems.

Please get an exam from an ophthalmologist to find out what's going on...it will give you peace of mind and potentially treat a problem before it gets worse.

I have multiple medical problems and know that it can get very depressing. It's difficult to deal with so many issues at one time and it sucks waiting to get a diagnosis and treatment. BUT...it's worth it in the end. Things have a way of getting sorted out. And, with the proper treatment, most things stabilize or resolve with patience.

Hang in there. You are doing a good thing for yourself and for your brother by seeking answers to your concerns.

The folks here are very kind, intelligent, and willing to help. Let us know how things are going.

BNLfan

[Bonnie]

Just curious, what does BNL stand for?

[Linda3032]

Regnad, I have sent you a PM (private message). Click on the box on the upper right hand corner of this page to read your message.

[Regnad]

Both the neurologist and my internist have looked at my eye pretty thoroughly. I see my internist on Wednesday and will get some direct answers about it. Neither have been worried enough to say much of anything about it, other than it's been caused by my apneas during sleep. The gist of it was I'm not healing much of anything during sleep... which I'm thinking sounds right, as I've had very painful corners of my mouth (off and on for many years) especially for the last maybe 6 months. Doctor and dentist said it's probably from mouth breathing... point is, they simply haven't healed - until this morning One side completely healed, the other almost completely. They were bad, too...
Also, my bp has been artificially non-existent... doc says that's playing a role in things as well. I whacked my shin about 2 years ago and the scab simply has not gone away. Doc said no bp and not healing during sleep is the cause. In any event, I'll talk him up on Wednesday.
The eye thing being a tumour - had a friend who had that. Needed brain surgery (which worked). I'll ask, but as much as they've been looking in there I believe they would have mentioned something...
I've certainly never had cluster headaches like my brother. Have had an ocassional headache, but nothing out of the ordinary. Except, during times of great stress (test taking in college especially) I'd get horrible pain in my teeth - really vicious and would last for days. It was to the point where chewing anything was virtually impossible. Didn't extend to my jaw and wasn't localized to any specific teeth (basically all of them... it might have been slightly better on one side than the other, but not much). I wonder if that could be related to his cluster headaches.
And hehe,,, I can care less about the pain of taking the tonsils out. Been living with (undiagnosed) chronic gout (never in the fee, always in my knees and wrists... and the baker's dozen or so kidney stones) as well as (undiagnosed) coeliacs (sp?) (allergy to wheat/flour/rye which would give sharp pains in my intestines and, well, frequent #2s) for over a decade. What spooks me is bleeding out in the operation... but it's got to be done, so oh well.
Thanks again, all... My doc is top notch and I trust him implicitly. Even if it wasn't for your responses (which I appreciate immensely) simply putting this stuff down on paper (as it were) helps me to sort things out. Also nice to see some light at the end of the long, dark tunnel

Hey... I was thinking about tossing -something- in to the heated humidifier for smell. Any suggestions, or is this a bad idea? It's nothing important, but when I tried my brother's machine out it smelled strongly of cinnamon (scented candle I believe) and I kinda dug it.

[birdiebaby]

Someone not too long ago suggested putting some essential oil on a cotton ball and putting it near the air intake of your machine. It works great. I wouldn't think that putting anything other than H2O inside the humidifier would be a good idea....

[Regnad]

[quote="birdiebaby"]Someone not too long ago suggested putting some essential oil on a cotton ball and putting it near the air intake of your machine. It works great. I wouldn't think that putting anything other than H2O inside the humidifier would be a good idea....

[Bonnie]

We've had threads on putting things into the humidifier water. Try and locate them. I'd be very careful, you could do possible damage to your lungs.

[BNLfan]

Hi Bonnie!

"BNL" stands for Barenaked Ladies, a music group out of Canada that I fell in love with years ago.

Regnad...I probably missed it in your post and didn't realize that you had been examined by a neurologist/neuro-ophthalmologist. You are 100% correct; if something serious was going on with your eyes, your doc would have caught it.

I used to work as an ophthalmic tech for a multi-specialty group and when you mentioned that your eyelid was droopy and you had blurry vision, some red flags went up and I became concerned. I'm very glad to know that you are under excellent care.

I'm glad that your friend's brain surgery was successful...that is a wonderful blessing indeed.

BNLfan

[Bonnie]

...I know of them, great music.