Newbie with Sleep Apnea, RLS & Bruxism, Desperate for Advice

[Jenna_in_oz]

Hi All,

I'm a newbie and I just wanted to check to see if what I'm experiencing with the CPAP is considered "normal" or not. I had a sleep study find that I was stopping breathing 27 times per hour & have severe bruxism. When I went back for the CPAP titration study, they found that I also had pretty severe RLS, which I had suspected with the state of my sheets in the morning. (Restless leg syndrome)

I've had my F&P Icon Premo fixed pressure machine for 7 nights so far. The first 3 nights I wore it the entire night & woke up with a migraine one morning. The other three mornings I woke up with severe headaches stemming from my TMJ. (I can tell I'm grinding more with the mask on) I have a splint that will relax my jaw at night coming, but it's still 8 days out from receiving it, which will be one more thing to get used to.

I don't feel I ever get into a restful sleep, always just lingering at the edge of consciousness. My fitbit (Fitness and sleep tracker) sleep logs confirm my restlessness - my sleep efficiency is about 20%, which is even worse than my usual 40% sleep efficiency without the CPAP.

I was unable to attend Uni or perform my usual responsibilities this week due to how awful I felt, which is clearly a concern. Both my physiotherapist & myotherapist commented that my muscles were in an even worse state of tension than usual, my jaw the worst. I also injured my shoulder and hip in my sleep from tossing & turning as the Restless leg syndrome is out of control.

I've tried loosening the mask straps as much as possible incase it was sitting to tight on a nerve or something, but it made no difference except to break the seal more often.

I slept with the CPAP on Friday night for 4 hours & slept the other 4 without it. I thought if I cleaned my sleep hygiene up, it would help but it didn't. I only read a book before bed (instead of watching TV) & took a hot bath with Epsom salts. If anything, it was worse.

I wasn't psychologically resistant to the CPAP at all, in fact I was like a kid at Christmas - couldn't wait to get started and start sleeping better! I have a good attitude towards it and as soon as I am done with Uni finals, I will comply to get my brain and body used to it, but right now I just don't know what to do.

Is what I'm experiencing a "normal" adjustment period? I have Uni finals coming up and I'm just not sure I can cope with the even worse than normal lack of sleep. The last two nights I haven't been able to use the CPAP as I have 12 hour days at university + 4 hours of train travel. I just cannot function with 1-2 hours broken sleep per night, I feel like I am going crazy and I cannot learn, concentrate or remain civil. lol

I am wondering if there is anyone who has had this complex of sleep issues and what was done in your case.

Sorry for the novel here, just thought the more info about the issues, the better. Thanks in advance for any assistance you all can provide!

[DeepBreathing]

G'day Jenna, welcome to the forum.

CPAP therapy does take some getting used to, and some people find it harder than others. There's no way of knowing beforehand how you're going to react. For many (including me) the first few weeks of therapy gives worse sleep than being without it. Eventually it comes good and we start to see some real benefits.

The "party line" is that apnea is bad, CPAP is good, persevere and try to improve your therapy and things will improve. In your case, with your exams so close, I'd suggest the opposite. Put the machine away until your exams are over. You are already dealing with RLS and bruxism, you don't need another complication at this time. Once your exams are over, then get that machine out of the drawer, get the hose on and get with the program! You'll be much less stressed than now, and you'll be in a better frame of mind to make a success of the therapy. As you get that under control you can also deal with the other issues - I suspect they are all inter-related and as your apnea improves, so will the other things.

Good luck! I hope you do well in your exams, then you can relax and get everything under control.

[zonk]

Sorry, you,re having all these problems to cope with. You need some professional help with RLS, there are various treatment options to manage the condition. RLS is a neurological disorder causes sleep deprivation

Teeth grinding is related to sleep apnea, both take place during sleep, treating sleep apnea can helps reduce teeth grinding

[Jenna_in_oz]

Thanks so much for your replies. I agree, Paul - that the conditions are possibly all interrelated and that probably at this point, as important as breathing properly at night is, making it through these finals without having a mental meltdown is most important. I don't feel like flushing 6 months of hard work down the loo. Regarding the bruxism - the CPAP made it HEAPS worse but I'm hoping that the new lower jaw occlusal splint will assist with that. I would wake up every morning feeling like I'd gotten scrappy with some pub-goers & been punched in the face. lol

I heard back from my sleep physician's office today and she said that my doctor has sent out a script for Neurontin (Gabapentin) for my RLS and fibromyalgia but after looking up the side effects, pub med information and other related studies - I am quite terrified to touch this drug! Being a medical student, I'm quite suspicious of prescription drugs and this one seems to be a doozy. I'm desperate for good sleep, but probably not that desperate. Anyone have personal experience with this drug?

I thought he might just give me a sedative for short term use to get me through Uni finals & the CPAP adjustment period.

I agree that probably waiting until I can give 100% to adjusting to the CPAP, I should pause the therapy. I'm ready to commit mentally, just logistically with my student and parental responsibilities - it's not plausible at the moment.

They have a request in for someone from CPAP Australia to call me and go over things with me as well, so I will see how that goes but honestly, I don't think they're going to be able to change anything that will make a difference.

[Jenna_in_oz]

I should note, that I know no one can give me proper advice about drugs - not knowing my medical history or being doctors. I am just looking to hear anyone's personal experiences with sedatives and gabapentin relating to RLS and sleep disorders. I am very hesitant to use drug therapy, I prefer it as a LAST resort when all other less risky options have been exhausted. I ALWAYS speak to my doctor and do extensive research before taking anything new.

[DeepBreathing]

I have fibromyalgia as well and used to get terrible insomnia, but since being on CPAP I sleep a lot better. I take half a Stilnox and amitryptilene which helps a bit. I'm afraid I don't know about Gabapentin.

[robysue]

The "party line" is that apnea is bad, CPAP is good, persevere and try to improve your therapy and things will improve. In your case, with your exams so close, I'd suggest the opposite. Put the machine away until your exams are over.

As a college professor, I'm inclined to agree with DeepBreathing.

It's not going to hurt things in the long run for you to wait a week or so until your finals are over to start your PAP therapy.

I would suggest that if the bruxism guard comes in during the meantime that you do try sleeping with it---most people have no trouble at all adjusting to sleeping with bruxism guards---they are not very big and they are usually very, very comfortable. The bruxism guard may very well take the edge off the headaches (or even eliminate them), but keep in mind that the bruxism guard won't do anything to fix the apnea. In the long run, you'll need to sleep with both the guard and the CPAP machine. It's not that difficult once you get used to it---I do it every night myself.

You are already dealing with RLS and bruxism, you don't need another complication at this time. Once your exams are over, then get that machine out of the drawer, get the hose on and get with the program! You'll be much less stressed than now, and you'll be in a better frame of mind to make a success of the therapy.

Again, I agree with DeepBreathing. Soon as the semster is over, get the CPAP out and start working on the adjustment to PAP therapy.

It is very normal for new PAPers to take several weeks to a few months before really getting comfortable sleeping with the machine. And until you are comfortable sleeping with the mask on (all night, every night) you might not feel very different, and in the short term, you may even feel worse: Adjusting to CPAP can throw some people a pretty big curve in the sense of (temporarily) disrupting their sleep. But once you start PAPing every single night, you will get used to it. And once you are used to it, then your body will start to heal and you'll eventually start feeling more energetic in the daytime.

Once you are PAPing, post here with any problems that you encounter and I'm sure you will have people making very useful suggestions on what to try.

Best of luck with your exams right now. And then best of luck with the CPAP adjustment in the months to come.

[robysue]

I should note, that I know no one can give me proper advice about drugs - not knowing my medical history or being doctors. I am just looking to hear anyone's personal experiences with sedatives and gabapentin relating to RLS and sleep disorders. I am very hesitant to use drug therapy, I prefer it as a LAST resort when all other less risky options have been exhausted. I ALWAYS speak to my doctor and do extensive research before taking anything new.

I have no first hand experience with Gabapentin. But my 85 year old father has taken Gabapentin for several years now to control his severe RLS. I know that it's made a huge difference for him in terms of his sleep. It's also make a big difference in terms of his second wife's sleep: She no longer is kicked all night long by his legs.

As far as having OSA + RLS: For some people, once they get the CPAP therapy optimized, the RLS is less of a problem. But for other people, the OSA masked the true severity of the RLS and the RLS can get worse once CPAP is started. You'll simply need to monitor the situation carefully.

It may be useful to ask the sleep doc about delaying the start of the Gabapentin until you get a chance to see what happens to the RLS as you start to get more used to the CPAP. If the RLS gets better once you are on PAP, then you may be able to avoid the Gabapentin. If the RLS stays the same or gets worse, you'll know you need the Gabapentin.

[Marnid2014]

I just wanted to give you a virtual hug, I am not one with a lot of knowledge, but wanted to tell you what a GREAT forum this is, everyone will help you and support you. I hope this all turns around for you soon. So many here are extremely helpful and know Cpap inside and out. Good luck.

[PaulaO2]

Technically, RLS does not happen at night. It can happen just as you are falling asleep, but it does not happen during sleep since it is a voluntary movement. It is considered a sleep disorder, however, because it can keep people awake since it gets the worse in the evening. During sleep, it is considered Periodic Limb Movement Disorder (PLMD). It is an involuntary movement and only happens at night. Of course, a person can have both.

RLS is an "itchy, crawly, skin creepy gotta move them or else" kind of thing. PLMD ranges from simple twitch to an outright violent jerk.

I am one of those people who has both RLS and PLMD. However, my PLMD was directly related to my sleep apnea. The lower my AHI, the less it happens. I once kicked my 85lb Rottweiler up and over the footboard of the bed. I'm told I kick out violently sometimes but we've never been able to figure out why (good AHI, good sleep, etc). My RLS was at its worse when I was doing a medication change and it was discovered I had a potassium deficiency. When I began taking potassium until the medication changes settled down, my RLS settled down nicely. Since then, whenever it acts up, I eat foods high in potassium for a few days and it sometimes will slowly go away again. Sometimes no, sometimes yes. A nutritionist I am seeing said to stop drinking all tea. I've not tried it yet since mine seems to come in cycles.

I have taken Neurontin for nerve pain. One side effect of it is sometimes the body builds up a resistance and you need to take more. The dose has to be slowly increased over time until it is no longer working. Another side effect is it can cause twitching. Lucky me, I experienced both. The higher the dose, the worse the twitching. Since then, I cannot take any other medication in the same family or the twitching starts even at a low dosage.