Is this normal

[Guest]

First off big thanks to this board. I have minor to moderate apnea and have had a cpap for several years now that I didn't use. I was never able to adjust to it and was one of those who constantly pulled it off during the night without knowing. Finally just gave up on it. Recently I was feeling really lousy and often waking gasping for air heart racing etc... we all know the drill. Anyhow this scared me so I decided to give it another go. Lucky I found this board to help me with some tips. I'm using a remstar plus no fancy card readers or anything and a ultra mirage nasal mask. Well first night I tried I kept having apneas and waking got that falling feeling and then like the mask was suffocating me. I tried to tough it out but couldn't. Made it till about 1:30 and ripped the mask off didn't get to slip till 3:30 and had to be up at 6:00.

So next night I upped my pressure from 10 to 14 and gave it another go. Was a bit difficult but I actually slept all night with the mask on. I slept uninterupted from about 9:30 to say 1:30 or so then couldn't get back to sleep for a while but managed to after maybe an hour or so. One thing I noticed was that while falling asleep I was still kinda jolted awake but more like I was aware I was trying to have an apnea but the machine didn't allow me to if that makes sense. Anyhow after I got to sleep no major problems. Next morning I actually felt pretty good. One problem is that I was clenching my teeth so tight to keep from mouth breathing my teeth hurt and I chewed up the side of my cheek.

On to night 3 I managed to keep it on all night again but this time woke up once to go to the restroom about 2:00 am or so got back to bed and just felt real nauseus maybe like I was hyperventilating a bit. Anyhow it passed fairly quick and I was able to put the mask back on and go back to sleep. Woke up once more and had a hot flash so probably an apnea event. Managed to get back to sleep but I swear I spent as much time trying to go to sleep as I did sleeping. I know I did sleep though because I remember dreaming. Anyhow this morning my jaw and teeth hurt like the dickens again and again I chewed up the side of my jaw.

I feel like crap today thing is I feel physically better but mentally exhausted. where before I used to feel mentally okay or so I thought anyhow and physically like crap. Anyone else experienced this? Is this normal?

Also wondering if I need to adjust my pressure either up or down or do I just need more time to get accustomed to it.
Last question does anyone have an answer for the teeth clinching I think this may be what made me feel more exhausted than anything.

I'm determined to make this work and any help is appreciated.

[neversleeps]

Clenching teeth... grinding teeth... that's me. Bruxism. The only solution I know of is a retainer of sorts (like a bite guard) made by your dentist/orthodontist. I had one for a few years and it worked great. Then I got braces (for a second time) and now have a regular retainer that seems to work in the same way.

Hot flashes. That's me too. Menopause at 43... or was I 41? Can't remember. Anyway, I was probably the only 43 year-old woman on the face of the earth experiencing hot flashes, having breakouts and wearing braces all at the same time! It was like being 13 all over again... YUK!!! But I digress....

I never thought to consider my hot flashes might be happening in conjunction with apnea events, because with CPAP therapy my AHI is under 5. But maybe the few events I do have are a contributing factor. Interesting... I'm going to try to pay attention to the times I wake up and see if it is somehow related when I look at my data.

It's so hard to know what to suggest you try without having the data to look at. (Data a different machine and software could provide.) If you could see the apnea events and the pressure at which they are occurring, you'd have a better handle on what direction to go.

Since it has been several years since you had a PSG and were titrated, could you arrange for another sleep study? I don't know your insurance situation, but that would help a lot... not only with pressure requirements (which may have changed), but also you'd find out if you have anything else going on besides OSA, i.e. PLM, big O2 desats, hypopneas, etc.

If you can have another PSG, here's what I'd suggest: when it comes time to get a prescription for a new machine, ask for a prescription for an APAP with heated humidifier. Then check with http://www.billmyinsurance.com to see if your insurance covers online purchases. If so, order whatever your heart desires from cpap.com and you won't be disappointed. (One word of caution: I don't know of anyone who has had insurance cover the purchase of the accompanying software, so that would likely be an out of pocket expense. But it is sooooo worth it if you want to see how the treatment is working for you!)

[oldsurfer]

My dentist set me up with a night guard because I was grinding my teeth so much. It doesn't stop me from clinching my jaw but has cut off further tooth damage. When I forget to use it my mouth and jaw definately are feel sore in the morning.

[Guest]

Thanks for the reply. Well let me say first off I also suffer from anxiety so I've noticed when I wake from an apnea I usually have a hot flash then a surge of panic racing heart. Don't know if thats a normal symptom or not could be part of my anxiety.
I do have an appointment with the doc on the 7th. I hope I don't have to do another study to be honest with you. I'm one of those people who has a hard time falling asleep as it is and really have a problem falling asleep away from home. During my last study I only slept 2 to 3 hours. I'm used to falling asleep to the tv and they had me turn that off at 11 then I'm not a back sleeper either just can't do it but with all the wires and whatnot it was pretty hard to get into a comfortable position. My study was supposed to be half and half. Half sleeping normal then half with the titration. Well because I didn't sleep that long I didn't get to do the cpap during the study. Instead the doc sent me home with apap and used the data from that to determine my pressure. All in all the study was a nightmare for me. As far as the apap to be honest I did my best with it but did take it off throughout the night as well. I don't remember my total hours of compliance but it wasn't more than maybe 3 to 4 hours a night over a two week span I think with some nights less. From there they gave me a cpap and fitted me for mask the first mask leaked like a sieve so they gave me the ultra mirage.

When I first got the cpap and couldnt get it to work for me I tried to get him to give me a humidifier due to nasal congestion but he told me to take a decongestant instead. I told him I can't do that because of borderline High Blood Pressure and he told me for short term use it would be fine. At that point I was very frustrated and just gave up on the whole idea being he told me my apnea wasn't that bad although even mild cases can make you feel as bad as having an extreme case according to the doc. Hopefully he is gone and I'll get to see a new doc. I'm going to see if they will give me an apap or at least a better machine. If not Im willing to pay out of pocket if I need to. I'll see what they say I don't know how this whole insurance game works. I know initially they sent me to a specific place to get fitted and all that.

Weird thing with the grinding is I didn't do it until I started using the cpap. Never had a problem with jaw hurting or anthing like that.

[Sleepless on LI]

Just one comment from me. The jolting awake might be PLMs and nothing to do with apnea. I used to experience a feeling just before I was about to drift off like I had slipped on a freshly waxed floor and would fully awaken myself because my whole body would jolt, like I was standing upright and trying to keep myself from falling. That was horrible, too, because then I'd have to calm myself down and start all over. Imagine my surprise to learn after my PSG that I had 14+ PLMs per hour. As the tech put it, I was probably beating up my husband every night. When I told my husband, his response was, "That explains all those unexplained black and blues on my arms and legs." And although maybe he was kidding, he may have been onto something there.

I think Neversleeps' suggestion that you get an updated PSG is a great one. I would talk with your doctor and see if they can get you a referral for one. Hopefully after all this time, your insurance would allow a follow up. "Several years" is a long time and things could have drastically changed. And since you don't have software, you really can't be playing guessing games as to what pressure is necessary to keep your airways open. Knowing what will is so much better.

Good luck!!!

[Guest]

Hmm interesting Lori thanks for the tip I'll ask about this definitely. My wife used to fall asleep at the foot of the bed sometimes watching TV until one night I had one of my fighting dreams and kicked her in the head while I was sleeping. OOOPS I felt horrible. Anyhow I have them from time to time and even broke a toe kicking the wall once. Usually correlated with dreaming about fighting and getting ready to land a finishing blow and then bang foot slams into whatever is in its path and I wake up. Doesn't happen frequently though just once in a blue moon. I also get these annoying muscle twitches in my legs as I'm dozing off. Not movements but just like little spasms. Then I also went through a phase where I would tap the wife on top of her head throughout the night without knowing I was doing it. She'd naturally get aggravated and I'd have no clue why until one night I woke while doing it and apologized profusely again. Somehow I just stopped doing it though. I'm just a horrible sleeper period I think hehe. I definitely get the falling feeling and then jerk awake and wife has said I didn't stop breathing so could very well be. Seems to be worse the more stress I have. I never would have thought it was something that could be treated though. I'll def mention it to the doc.

As far as the OSA I'm hoping he will let me upgrade to a resmed pro 2 if not I'll ask for a new script and buy one myself. Even with a new study I'd be more comfortable being able to track everything via software since I'm sure things change from time to time.

[Sleepless on LI]

Oh, if not PLMD, RLS, which is slightly different. Restless Leg Syndrome is when you feel that horrible ache in your legs, almost like a charliehorse, but not as bad as a full blown muscle pull like that. Just an uncomfortable feeling where you just can't get your legs to relax. You sound like you AT LEAST have that. As far as the involuntary kicks, etc., from what I've learned, PLMD, true PLMD, is a timed thing, supposedly like every 30 seconds or so, for an amount of time. I am going to go read some more on the subject and see what I can find out.

I highly doubt this, but do you by any chance have a copy of your last PSG? If you do, look and see if it mentions anything about PLMD. Even though I had 14+ off cpap, I had zero once on the mask. So yet another reason to try to bear with the therapy, amongst a million others. It doesn't always alleviate or eliminate PLMs, but it is known to in some cases. There is also mention about a low iron level that can cause PLMs, too.

ADDENDUM: Since I was still the last poster when I found this article on the Internet, I was able to edit the last post (this one, actually, now edited). Check out this link. http://www.sleepscene.com/plmd.htm
AND http://www.helpguide.org/life/restless_ ... me_rls.htm

[Guest]

Very very interesting I think your on to something. I'm sitting here right now another sleepless night. My big problem is falling asleep I get that falling feeling and then notice about the same time I get a leg spasm. This is enough to wake me and get a surge of adrenalin going. So anyway I lay down about 10:15 or so about 10:50 I'm jerked awake. Not gasping or anything but definitely startled. Then as I'm laying ther adn I get this often just never thought anything of it its like the muscles in my calves start well what I can best describe as rippling or maybe shivering like when your cold but I'm not at all cold. It doesn't hurt at all its just annoying so I never thought it was a problem. And yes if I get up and walk it goes away although I wouldnt necesarrily say I have an urge to get up and walk either, I'm to exhausted for that. Anyway I lay there for an hour or so trying to relax it away but no dice. So here I am sitting on the couch dead tired trying to figure out how I'm going to fall asleep. Usually if I can just get past the falling asleep part I"m good to go. The whole time I've been thinking I'm low in potasium trying to eat banannas etc... as my feet cramp up as well. Unfortunately I don't have a copy of my sleep study but I'm going to ask for a copy when I go for my appointment. Maybe sleep is just around the corner. Sorry for my ramblings but I really thank you for your help. Although the apnea still needs to be treated maybe thats not the worst of my troubles as far as getting a good nights sleep.

[Sleepless on LI]

Guest,
I'm so glad to be food for thought for you. Maybe in the interim, before another PSG, you could have your blood tested for your iron level. I was anemic shortly before being diagnosed with OSA which could have been the reason for my 14+ PLMs per hour during my study. As they wrote in my report, they were responsible for significanlty fragmenting my sleep architecture. And there are times when you aren't even aware they are happening that they are causing arousals in your brain, so you awaken tired every morning. Maybe iron supplements will help IF you get your blood tested first. I am not suggesting you just start taking iron. But you COULD look into eating more food that contains iron. Like my doctor said, if you can't handle the supplements, which can be hard on the stomach, eat a bag of fresh spinach and you get your iron in one shot. There are many foods that contain iron. Why not give those a try? They will never hurt you. At least until you check your iron level. You don't even know if that is what is causing it conclusively. It's a possible reason to have them, though.

There are also medications they can put you on, if cpap doesn't help take them away or if you don't have a SDB/OSA situation but still have the RLS or PLMD, to help such as Mirapex, which my mom takes for Parkinson's, or Clonopin and a few others. There are posts, too, I believe on this topic if you do a search.

Good luck and let us know how you do.