Hello: I'm new and here is my story

[tekis]

Tekis - Have you tried anything else for RLS besides methadone? It probably isn't the best thing if you have OSA and I'd talk to your doctor about it now that you're on Cpap.

Yes, I've tried EVERYTHING else. It was a last resort. I only take 5-10mg and I don't take it every night. The good news is that I had an okay night last night! Managed to have the mask on for the first two hours of lying in bed and the last two hours in the morning. I may have even actually slept with it on for about 20 minutes--a first! WE are doing this! Thanks!

PS: Today, I'm not yawning uncontrollably, and I didn't get "mad" at the mask. I have a brand new attitude and real hope about this! My sincerest thanks and graditude for all the support.

[kteague]

I agree about looking for other possible options for treating the RLS. Hopefully you've already done some basic things like have iron studies to include your ferritin level and are nutritionally sound. Are you on the methadone for your daytime symptoms of RLS or for sleep? Does you being prescribed this med mean you've exhausted all the other options and this was your last resort? Just FYI, some have experied central apneas on this med. If it is a necessary med, I'd want that effect ruled out. If it is necessary and if it does cause that problem, the basic machines designed to treat obstructive sleep apnea don't address central apneas.

I've been down the road of having OSA and RLS/PLMD coexisting and it took years before the extent of each was fully recognized. It can be a game of cat-and-mouse, especially of you have a health care provider not real knowledgeable about their interactions. Here's my concern about your RLS treatment. Could it be that the severity of your sleep disruption that seemed to merit what I consider to be radical treatment of RLS have really been partly due to having untreated OSA? Maybe your RLS is not a severe as once thought and CPAP treatment can lessen your need for such strong intervention. I do know that my RLS/PLMD added a layer of difficulty in adjusting to using CPAP. The uncomfortable sensations kept me agitated and just the mask and headgear touching me was at times almost maddening. There was no such thing as waking up and just laying there with the mask on and going back to sleep. If I woke up, it all HAD to come OFF till I was ready to fall back asleep. I can sympathize with anyone going having to cope with this in additional element to using CPAP in general. I can tell you that persevering at working through all this was worth all the effort. Even if you RLS still needs work, treating your OSA can give you enough of a boost to help deal with the rest. Best wishes.

[tekis]

I agree about looking for other possible options for treating the RLS. Hopefully you've already done some basic things like have iron studies to include your ferritin level and are nutritionally sound. Are you on the methadone for your daytime symptoms of RLS or for sleep? Does you being prescribed this med mean you've exhausted all the other options and this was your last resort? Just FYI, some have experied central apneas on this med. If it is a necessary med, I'd want that effect ruled out. If it is necessary and if it does cause that problem, the basic machines designed to treat obstructive sleep apnea don't address central apneas.

Yes, I did the iron/blood tests. My blood is good except it's alittle low with B12 (I get injections for that twice a month) and tiny bit high in cholestrol. I am not overweight and I'm 47 years old. I don't have PLMD. I have been thru neurontin, gabapentin, Cimbalta, pramipexole, and temazepam. Tried all those other over the course of 17 months. I'm patient. Methadone was our last resort, and it works way better than any of those others. It just works. I generally take it a night--never more than 10mg in 24 hours. I don't even take it every day. I took Cimbalta once and just couldn't take it again; it was awful. I tried gabapentin for an entire month and couldn't deal with being that tired all the time. I gave everything else a fair shake. I have renewed hope for this cpap machine and a positive attitude. I don't like methadone's constipating effect. Other than that it doesn't bother me at all. I don't nod from it. I've been taking it for 4 months. Since I've had sinoplasty, the cpap hasn't been adjusted. This Thursday I'm taking it to the sleep clinic/doctor. I'm using it every night until then. Thanks.

[tekis]

"Bump"...in the night.

[Newone]

You asked about ferritin levels. All my blood work is ok, but ferritin is low normal. I have heard it should be in your 60s which mine is a lot lower. Sounds like you have knowledge/experience in this? Thank you.

I agree about looking for other possible options for treating the RLS. Hopefully you've already done some basic things like have iron studies to include your ferritin level and are nutritionally sound. Are you on the methadone for your daytime symptoms of RLS or for sleep? Does you being prescribed this med mean you've exhausted all the other options and this was your last resort? Just FYI, some have experied central apneas on this med. If it is a necessary med, I'd want that effect ruled out. If it is necessary and if it does cause that problem, the basic machines designed to treat obstructive sleep apnea don't address central apneas.

I've been down the road of having OSA and RLS/PLMD coexisting and it took years before the extent of each was fully recognized. It can be a game of cat-and-mouse, especially of you have a health care provider not real knowledgeable about their interactions. Here's my concern about your RLS treatment. Could it be that the severity of your sleep disruption that seemed to merit what I consider to be radical treatment of RLS have really been partly due to having untreated OSA? Maybe your RLS is not a severe as once thought and CPAP treatment can lessen your need for such strong intervention. I do know that my RLS/PLMD added a layer of difficulty in adjusting to using CPAP. The uncomfortable sensations kept me agitated and just the mask and headgear touching me was at times almost maddening. There was no such thing as waking up and just laying there with the mask on and going back to sleep. If I woke up, it all HAD to come OFF till I was ready to fall back asleep. I can sympathize with anyone going having to cope with this in additional element to using CPAP in general. I can tell you that persevering at working through all this was worth all the effort. Even if you RLS still needs work, treating your OSA can give you enough of a boost to help deal with the rest. Best wishes.

[tekis]

"Bump"...in the night.

[tekis]

Doing better with this! Thank-you to everyone here.

[mon]

Make sure you look at this before you take your next dose of melotonin
https://www.youtube.com/watch?v=0r7l_cm ... =endscreen

[tekis]

I had my best night yet with the machine--went ALL night and woke up with in on! I'm off melatonin for the time being. I rotate my sleep meds when I can.I felt pretty good today! I did yoga, meditation, food shopping, hung out with friends; things are looking up. Thanks.

[ughwhatname]

Okay, I'm a Day Nine gal, and I'll give you my experience. At the sleep study, I wigged out with the mask. I was awake for two solid hours, breathing through my mouth every third breath because I thought surely I was suffocating. I was concerned about being successful, though I knew I had no choice.

My doctor advised me to wear it only while watching TV for the first two weeks, to desensitive myself. First night, I wore it while watching TV, in a semi-reclined position. That went fine, so I decided to wear it to bed after all. Wore it for three more hours, then took it off. Next night, and every night since and even every nap, I've worn it. I was still having some suffocating feelings, and discovered by reading here that perhaps my minimum pressure was too low, so I programmed it to start one higher. No problems with that since. Another thing that freaked me out was sometimes waking to pressure that was too strong to exhale against, again giving me suffocating feelings. I then switched my EPR to 3 from 2, and that has helped. I use the nasal pillows and was using XS, but tried going to S hoping to improve my ability to exhale when the pressure is higher.

Right now, we peacefully co-exist. My only problem at the moment is the larger pillow seems to be more prone to leaking.

Keep at it. Its so worth it.

Thanks for the encouragement! 3 weeks? Okay. Does one just put it on and go the whole night? Or do a few hours at a time? Or is everyone different? Should I get back on sleeping pills to help get me thru it? I appreciate the responses thus far. "Good night..."

[Xney]

If one of the nasal pillows sizes seems "better" but doesn't quite fit right due to leaks, you may want to check out different nasal pillow masks. They fit a little differently. You might be able to find one which is a little larger for comfort yet fits correctly.

Nasal pillows need to seal themselves to your nose when they inflate, and not be worn too tightly. If they aren't sealing on their own near the outside, then it may not be a great fit. It takes a bit of tweaking, but don't be surprised if not all of them will fit, even with different sized pillows.

For example, I've found for me personally that the Swift LT and Aloha pillows fit well, but I can't find a good size on the Swift FX - even though it's made by the same company as the LT! I'm sort of "between" sizes on the FX and they just don't seal well.

[ughwhatname]

Ah, thanks so much! You've answered one of my other questions. I wanted to try the Swift FX, which a lot of users seem to like, but wondered if the pillows would just be the same size as the LT. I think I'll call my DME and see about exchanging since I can do that in the first 30 days. I do lots of tummy sleeping, so I wonder if what look like silicone straps may slip less than on the LT with the cloth covers.

If one of the nasal pillows sizes seems "better" but doesn't quite fit right due to leaks, you may want to check out different nasal pillow masks. They fit a little differently. You might be able to find one which is a little larger for comfort yet fits correctly.

Nasal pillows need to seal themselves to your nose when they inflate, and not be worn too tightly. If they aren't sealing on their own near the outside, then it may not be a great fit. It takes a bit of tweaking, but don't be surprised if not all of them will fit, even with different sized pillows.

For example, I've found for me personally that the Swift LT and Aloha pillows fit well, but I can't find a good size on the Swift FX - even though it's made by the same company as the LT! I'm sort of "between" sizes on the FX and they just don't seal well.

[Xney]

I'm a big fan of the silk covers. I actually use the FX covers on my LT!

The right pillows will seal well, then you tighten the mask enough that it doesn't slip around easily, but doesn't feel tight. Something like "snug but not tight" is what you want. You don't want the mask "pulling" against your nose - that's too tight.

I like the Swift LT and Aloha because the overhead routing is great for stomach/side sleeping, but the fit and seal of the pillows is more important than that.