Found A Peanut

[kerravonsen]

Friends, Romans, Countrymen, lend me your pyjamas!
The results are in, and...
I have Very Severe sleep apnea.

No wonder I have spent the last nine months feeling like a zombie.

You may wonder why I would then feel hopeful, but the fact that they now know what is wrong with me, and that there is an effective treatment available means that there actually is light at the end of this interminable tunnel. So what if I have to make like a fighter pilot for the rest of my life -- at least I will get a decent night's sleep!

The other good news is that I don't have asthma. They wanted to check that just to be sure, and the breathing test says that I have perfectly okay daytime breathing. It's just that when I fall asleep I stop doing it.

I get fitted for the breathey machine stuff next Friday.

Comments

[vilakins.livejournal.com]

That's wonderful, that you know what it is and that they can treat it. :-)

[kerravonsen]

Yes, "that makes it all worthwhile".

The evil cunningness of sleep apnea is that the very first thing people think of to treat sleeping problems -- sleeping pills -- actually make it worse. I'm very glad I only tried sleeping pills a couple of times in this mess, concluding that they didn't help (which of course they didn't).

[vilakins.livejournal.com]

How did they find out you had it?

[kerravonsen]

Well, first we had the red herring of me also complaining of bad coughing, bad enough to wake me up in the middle of the night. So first my GP tried me on an inhaler, but that didn't seem to help. My mum (she's a doctor) also tried me out with a humidifier, painkillers and anti-histamines, and the humidifier and the anti-histamines seemed to help a little. Then I went to New Zealand and discovered the joys of the electric blanket, so I bought myself one when I got back. That helped to reduce the coughing, but my sleep was still as unrefreshing as ever.

So then my GP was savvy enough to see this warranted further investigation (since it was really bad, and I'd gotten to the point where I was nodding off in the daytime I was so tired) so he referred me to a sleep specialist, who could admit me to hospital for a sleep study. I had enough of the classic symtoms (unrefreshing sleep, waking in the night, sleeping during the day, fatigue, loss of concentration) that sleep apnea was considered to be a possible cause. And the sleep study confirmed it.

[kerravonsen]

Oh, and snoring. Snoring was also one of the symptoms, and I discovered on my trip to NZ that I have really bad snoring.

[vilakins.livejournal.com]

Just got mail about this, only two days late. Sigh. I hope my ISP catches up with the backlog soon.

So you had to sleep while being monitored? I thought so. I'd find that very off-putting. It must be wonderful knowing what it is at last though, and that it can be treated. What exactly does the breathey machine do, give you oxygen?

[vilakins.livejournal.com]

Ignore that. I see mistraltoes has answered that already.

Do let us know how it goes though. :-)

[grumpoldusenaut.livejournal.com]

Yes, it can actually be good to be told you have some unpleasant disorder, when it comes with "and this is how we treat it!" I'm glad *someone's* got good news on the medical front. :)

[kerravonsen]

Yeah.

[mistraltoes.livejournal.com]

Boo for illness.Yay for the treatable! Now I just hope that you find it easy to adjust to the equipment, and get back to feeling normal ASAP. :)

[kerravonsen]

Well, you were the one who told me it was like being a fighter pilot. I shall cling to that metaphor in hope.

[mistraltoes.livejournal.com]

Well, it came originally from my dad, who actually was a fighter pilot, so I think we can trust it. Now, there are two basic types of masks that I know of. The first is triangular and fits over the nose, with headstraps of course, and it looks almost exactly like a fighter pilot's rig. The other type comes down from the forehead and fits into the nostrils, so it looks less like a fighter pilot, but does essentially the same thing. Each type has advantages and disadvantages, but I've used both and don't really have a preference.

One thing I really like is that I never have difficulty falling asleep any more. Putting on the mask works like a sleeping cue - I put it on and I'm under in two or three minutes, tops. On the down side, that makes it hard to read oneself to sleep. ;-)

Be aware that if you experience dryness of the throat or sinuses, you may want to get an in-line heated humidifier for it (which is not nearly as fancy as it sounds). It's a little plastic chamber that sits on a heater. You fill it with distilled water and let the air pass through it on its way from the compressor to your mask.

[kerravonsen]

On the down side, that makes it hard to read oneself to sleep.

I never deluded myself that reading in bed was in order to read myself to sleep -- it's just a pleasure to be had before going to sleep...

However I often use the before-I'm-asleep time to work on fanfic plots...

you may want to get an in-line heated humidifier

Yes, I asked the sleep specialist about humidifiers, and she said that it was an individual thing (and that I should rent different machines initially until I find the one that best suits me). She said some people find the dry air irritating, but other people find the humidified air makes them feel like they're drowning -- so we shall have to see how it goes.

[watervole.livejournal.com]

I am so glad it is treatable. Make sure they warn you of any side effects/problems in advance. They are easier to cope with if you know - it's the ones you don't know about that irritate.

What exactly does the machine do?

[mistraltoes.livejournal.com]

It takes in air, filters it, compresses it, and blows it via a hose and mask into the user's nose, at an amount of pressure precisely calculated for the individual. Sometimes, to prevent dryness of the throat and sinuses, the hose is also run through a humidifier.

Any side effects are usually minor - dryness and stuffiness are the ones I remember being warned of, and those are treatable with the humidifier and/or steroid sprays. I wound up losing my singing voice to the drying effect on my vocal chords, and worsened my overbite from pressure from the mask (my nose area is very small and I have to wear the mask tighter than most people to keep a seal), but I've never heard of either of those things happening to anyone else. I'm optimistic that kerravonsen will have a fairly easy adjustment - most people do once they get over the weirdness of it.

[kerravonsen]

Yes, the specialist (and the brochures) did talk about possible side effects, which are mainly to do with the dryness of the air going in to the mask, which could end up irritating the sinuses. But they didn't mention losing the singing voice! (Arrgh!)

I don't think I'll have to worry about the overbite problem, because the specialist did mention that masks have improved nowadays -- now there are masks designed for female faces (which is what I suspect Mistral's problem is). Since sleep apnea happens mostly to men, the equipment used to be designed solely for the larger clunkier masculine face. But that has apparently changed, so I'm hopeful.

What's going to happen next Friday is that I'll be trying out a few different masks, and then they'll hook me up to sensors like last time, and hook me up to the machine, and then let me sleep, and then adjust the pressure on the machine so it's enough to keep my airways open. Then they'll give me the figures in the morning, and then I'll ring up the machine man and buy a mask and hire a machine. And then I'll see the sleep specialist in a couple of weeks to see how it's going.

I did ask about travel, and the specialist said the machines aren't very big, about the size of a tissue box at most, and one can get smaller ones. Hmmmm, I just realized this probably means I can't go camping (no electricity) but I hate camping anyway, so this is a wonderful excuse to say no to my brother the next time he offers. Though I suspect it also rules out narrowoboats -- oh well. Most places I am likely to visit in the world will have electricity.

Singing voice

[watervole.livejournal.com]

I do hope that doesn't happen to kerravonsen. Speaking as another filker, I know what it's like. I lost my singing voice to another medical reaction. Most of the time now, I have it back, but it's been gone these last four weeks and I really miss not being able to sing. Half the time, I can't even talk.

Still, even that is better than no sleep.

Re: Singing voice

[kerravonsen]

Still, even that is better than no sleep.

That is what I shall have to tell myself, if it happens.

Re: Singing voice

[watervole.livejournal.com]

If it does happen, come to me for tips.

Re: Singing voice

[kerravonsen]

Thanks.

Re: Singing voice

[mistraltoes.livejournal.com]

It's not going to happen. I mentioned it because I'd have liked to know up front it was a possibility, that's all.

Re: Singing voice

[kerravonsen]

I agree it seems pretty unlikely, because I've already been experiencing lots of drying-out of my mouth in all this, breathing through my mouth (and I mean a lot -- some days my tongue would be cleaving to the top of my mouth it was so dry) and I haven't lost my singing voice, so I don't think it's that likely.

Re: Singing voice

[mistraltoes.livejournal.com]

I do hope that doesn't happen to kerravonsen.

I think it extremely unlikely that it will. The doctor I went to originally was the top expert in the U.S. for the disease, and he'd never heard of it happening to anyone else, so it must be extremely rare. Likely in my case there were other factors involved as well.

Speaking as another filker, I know what it's like.

Worse still when it's your livelihood, believe me. I hope you get your voice back soon.

Still, even that is better than no sleep.

No sleep is bad, but it can worsen to the point of being life-threatening if it goes untreated; I'd say that has to take priority over singing. And I'm really glad that kerravonsen is finally going to get the right treatment.

Re: Singing voice

[kerravonsen]

No sleep is bad, but it can worsen to the point of being life-threatening if it goes untreated; I'd say that has to take priority over singing.

Yes, I'd say my case is fairly serious, considering some of the things the doctor said -- she mentioned oxygen, and brain, and heart... I mean, let's face it, I've been stopping breathing!!!! It's enough to make me afraid to go to sleep!
I just have to tell myself "nearly there, nearly there..."

Re: Singing voice

[mistraltoes.livejournal.com]

No, don't be afraid; You're still doing relatively okay, and as you say, nearly there. You might try sleeping in different positions and see if it helps in the meantime. I have better luck sleeping on my side, or partially sitting up, in a reclining chair.

Please don't worry, I'm sure it's going to be all right. {{hugs}}