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

[trish6hundred]

Hi Jenna,
WELCOME! to the forum.!
I'm sorry you are having such a rough time right now, since you are so stressed, you might want to wait 'til you get your exams out of the way but then, REALLY get SERIOUS about treating your sleep apnea.
I know CPAP therapy can take some getting used to, but if you just keep trying after your exams, it does get better.
Feel free to ask any questions to help you understand this therapy as you need to and best of luck on your exams.
Try to take care of yourself.

[Jenna_in_oz]

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.

Thank you so much for your detailed reply, Robysue. I am not sure what category I fall in yet, but the sleep physician did say that once they got me breathing properly at my pressure of 9 on the APAP during the titration study that I started kicking more in my sleep and was exhibiting a lot of movement. I know this to be true even when I'm not on the PAP therapy though, because quite literally the sheets are in a ball in the morning and the sides of the fitted sheet are pulled up when I sleep on my own as my hubby works night shift.

It's been even worse lately and I've been having lots of extra joint pain and even sore calves, like I have been exercising really hard but all I've been doing is my normal yoga practice and walking. My knees have been quite painful too, which they normally aren't. So I have a feeling that I am kicking quite hard in my sleep and causing muscle soreness and damaging my knees and hips. It's the only plausible explanation I can think of.

There's part of me that is so desperate to sleep and not be in pain that just wants to take the Gabapentin, and then there is the other cautious side of me that doesn't want to take it until I am 110% sure that I need it. I feel very confused and…well…like I said, desperate.

[Lukie]

I have all the conditions you mentioned. My lower teeth are ground down to stubs practically from years of untreated sleep apnea and bruxism. I also have RLS. Give yourself time. CPAP is your friend.
You may find that even if you mouth breathe that a nasal mask is far more comfortable. You can wear a chinstrap to keep your mouth shut. A mouth guard will help your bruxism and it is not that hard to deal with.
With Restless Legs syndrome there are a host of medications that can help with it.
I take ten milligrams of Doxipin which helps me relax and also helps with sleep maintenance but there are other that are very effective. You can as your sleep specialist. If you stick with it and keep trying new masks and remedies for problems and ask people here for help you will find that in a few months you will be feeling much better. Welcome to hosehead land!

[Jenna_in_oz]

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.

Thank you, Marnid! It does seem like a wonderful forum with lots of knowledgeable and helpful people.

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. My partner tells me 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.

Thank you for this info, Paula! The doctor did not tell me the differences between RLS and PLMD but that makes sense. I looked up info and it said that 80-90% of people with RLS also have PLMD anyway. I know I do it in my sleep and during the day I am constantly bouncing my legs. I have just read too that antidepressants can make it worse, and I am on them currently. It seems like you have your RLS/PLMD under control, hopefully one day I can say that, too!

I am studying nutritional medicine, so I try and stay on top of getting the proper nutrition. I eat a very balanced and healthy diet and I supplement vitamin D, zinc, potassium, magnesium, curcumin, fish oil, l-glutamine & pro-biotics. The only thing I am wondering about is iron as I heard that can affect RLS but I eat red meat at least 3-4 times a week, so I doubt I would be low in iron.

Thank you for the info on Neurontin. Was it hard to withdrawal from? I had a doc put me on the max dose of Tramadol for my FM pain and coming off of that was sheer hell. The worst experience I've ever had. I just don't want to get into a position where I need to withdrawal from a medicine that's going to cause me that kind of pain again.

Hi Jenna,
WELCOME! to the forum.!
I'm sorry you are having such a rough time right now, since you are so stressed, you might want to wait 'til you get your exams out of the way but then, REALLY get SERIOUS about treating your sleep apnea.
I know CPAP therapy can take some getting used to, but if you just keep trying after your exams, it does get better.
Feel free to ask any questions to help you understand this therapy as you need to and best of luck on your exams.
Try to take care of yourself.

Thank you so much, Trish! I am definitely going to wait until my exams are done, otherwise I think it's just going to be like pushing ahem… STUFF uphill. Thank you for your well wishes and welcome.

I have all the conditions you mentioned. My lower teeth are ground down to stubs practically from years of untreated sleep apnea and bruxism. I also have RLS. Give yourself time. CPAP is your friend.
You may find that even if you mouth breathe that a nasal mask is far more comfortable. You can wear a chinstrap to keep your mouth shut. A mouth guard will help your bruxism and it is not that hard to deal with.
With Restless Legs syndrome there are a host of medications that can help with it.
I take ten milligrams of Doxipin which helps me relax and also helps with sleep maintenance but there are other that are very effective. You can as your sleep specialist. If you stick with it and keep trying new masks and remedies for problems and ask people here for help you will find that in a few months you will be feeling much better. Welcome to hosehead land!

Hi Lukie,
Thank you for your reply. I know I can't use a chin strap and nasal mask because the splint I am getting is on my bottom teeth and will be built up with lumps in the back on the molars to keep my jaw in a relaxed position and to take the force out of my grinding. My mouth will most likely always be open, so unfortunately it's going to have to be one way for me.

I will definitely stick with it, I think my hubby would have a heart attack if I didn't get it a proper try after spending $1600 on the unit and mask!!! lol
Seriously though, I WANT to feel better and if it means going through a month or even a few of bad sleep to get used to it, I will! As I've said in other posts, I am desperate for sleep!!

Thank you again to everyone for their information, kind words and welcomes. I can't tell you how much I appreciate it during this tough time!!

[vsheline]

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.

... Put the machine away until your exams are over.

Good advice.

I suggest, however, rather than putting machine in a drawer, instead, don't wait -- immediately pack the machine up and take it back to whoever provided it to you and calmly inform them how much the machine is making your sleep worse and insist that you will need a fully data-capable machine which reports the breakdown of central apnea versus obstructive apnea, so you can properly find out what is happening wrong when you restart therapy after finals are done.

If you wait too long to return the machine you may not be able to get the machine upgraded to a more capable model.

You may be experiencing CPAP-induced Central Sleep Apnea (also called Complex Sleep Apnea), and in future you may need medications for your RLS which may worsen either obstructive or central apneas. You will need a machine which identifies, reports and properly responds to central events, such as the ResMed AutoSet or Philips Respironics System One REMSTAR Auto with heated hose.

It looks to me like your treatment will require a better machine. Please do not accept a machine which does not provide central apnea detection.

Also, Auto models can be set to work on constant pressure just like your present machine, and the auto-adjusting feature can be enabled occasionally for a day or a week to recheck that the normal fixed pressure is not higher or lower than needed. Actually, our pressure needs change hourly throughout the night as we change our sleep position and an APAP machine left in Auto mode will provide no more pressure than needed throughout the night. Using lower pressure is sometimes important in avoiding central events.

Recommended CPAP machines:
http://www.apneaboard.com/wiki/index.php...ne_Choices

Take care,
--- Vaughn

[PaulaO2]

We had to step down on the Neurontin but I don't remember there being any difficulty in it. I tend to avoid any medications like that. Right now I am on Baclofen and I had to really think about it for a while before I tried it.

I am currently taking Topomax for headaches and there was concerns it would cause the twitching too. We started out at a low dose and slowly increased it to the ideal treatment dose and there's been no problems. Every once in a while, if I am really tired or stressed, I will start twitching, a whole body thing, but just one or two and then I just relax and calm down and whatever.

I have a way cool neurologist right now who knows medication and interactions. And he keeps track of all my conditions. We discuss each one whenever we contemplate a new medication or change. He is very much aware of my sleep apnea. Sleep and weight gain are two of the things top on his list.

[Healinhand]

I also had RLS. Its gone now.

[marilouw]

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.

Hi Jenna,

sorry to hear you're struggling.

I was on gabapentin 600mg nocte for 3 months for fibromyalgia. While it did help reduce pain, unfortunately it also caused massive weight gain, 15kg in 10 weeks, pregabalin also had a similar effect.
I had no other issues apart from that, which for me was reason enough to cease them completely.

Best of luck with your exams and health issues

[StarkismyDog]

I was on Gabapentin for a few years to treat my RLS and PLMS. I didn't experience any side effects. That was before they figured out the sleep apnea. The gabapentin didn't help quite enough, so I also took 400mg Provigil (modafinil) in the mornings. I went from sleeping 14-16 hours a day to 8 or 9! Around the time they figured out the sleep apnea, they switched me over to Mirapex (pramipexole) instead of gabapentin and started me on CPAP. What a difference! I'm down to half my original dose of the modafinil, which is great. Still need my 8 hours of sleep.

It is tough to get used to the CPAP. Be patient with yourself, and, as others have said, don't force it when you have exams! I love my machine now. I nap with it.

Also, AVOID CAFFEINE! That will exacerbate the RLS!

[Sandra_ON]

You can buy a plastic mouthguard at Walmart or your pharmacy to tide you over till yours comes in. That's all I use. I have bruxism very bad. My teeth are very worn down. Good luck!