debbluebird wrote:I keep it all clean, everyday. My problem is keeping my mouth shut. I'm a mouth breather. No matter what I've tried I always manage to get my mouth open, so that I leak. I don't ever leak around the nose pillows. (my husband watches me sleep) It I tighten the chin strap so I don't leak, then my neck aches. I'm at a loss. I found a different chin strap on line and copied it. Made one myself. Modified it to fit me. It worked for awhile, but then lately, my neck is aching. Since there is a correlation between sleep apnea and severe WED, I'm sure this is the major part of my problem.
Have you tried the ones that fit over the mouth too? I had one for awhile that was unique as in it came with the materials required to create an individual mouth piece. Once it is created instead of the mask being held on by straps it is held on by closing your mouth over the mouth piece which forces you to keep your mouth closed during sleep. I used it about a year and the Doc suggested the nasal pillow type and I needed a new one so got it. The one I am talking about is sold on Internet by guy who invented it. The air tubes attach to mouth piece and you adjust them once so they always fit when you bite the piece, also good for people who grind teeth in sleep, to prevent teeth wearing down.
Beth, No, it won't work, if your mouth is open. It's the same thing as a mask that is leaking. You won't get the good sleep. CPAP is related to WED/PLMD. If you have sleep apnea more than likely you can get WED. It is a must that we wear our masks to get the good sleep.
Well, it's just after 1 am. My leg got me up around 12:30. This is my new pattern. Last night I was up til about 5 am before I could go back to sleep. My left hip starts to ache, then the PLMD starts in. But this is also the second night that I moved my CPAP with me. Right now I'm able to sit here and type. Last night I had to pace. Since I did get some sleep this past day with my mask on I don't feel so bad tonight. Another new pattern is falling asleep around 10:30 pm, so I'm getting about 1 1/2 to 2 hours of sleep before my leg starts in. There have been so many many night that I was awake during that period of time. It's kind of like having a baby wake up to have their nightly cry period. My daughter went through a period where she cried every night from 10 to 12. I'm starting to get sleepy again, so I put my mask back on. Just haven't put my feet up in the recliner yet. I will test that in a few minutes to see if my PLMD is still there. Hope I don't have to stay up til 5 am this time.
Just now I thought I was going to be able to go to sleep. My left leg stopped jerking, but not the right leg has started. I know I have plenty of Methadone in me. 15 mg. Can't take more, I would itch too much. Oh well, let the pacing begin.
It wasn't so bad last night. It slowed down, but I couldn't go back to bed until about 4:30, but then slept til 7. Then took another 2 hour nap later this past morning. So I have felt pretty good today. This evening I haven't had to take the Methadone early. So not so bad. I have decided to start the neupro patch in another couple of weeks if the symptoms stay the same. I just want to try. I don't particularly like being up 3 or 4 hours every night. If this becomes my new normal then fine, but for now I'm going to try and stop it.
First I want to say thank you for the people here and this site, who allow me (and all of us) to communication our feelings and experiences. My story isn't anything out of the ordinary, but the reason I write here is that it helps me so much to be able to talk to someone about how I feel. I'm a 62 yr old female, an RN, who was forced into retirement in Jan. 2011 because of my WED/PLMD. Today I really didn't have any symptoms to speak of. I took my meds this evening, not having to take them early like I have in the past several days. I went to bed, but didn't go to sleep as early as I have been, it was about 11:30. I slept for two hours and then of course my leg woke me up. Got up, went to my recliner. Tonight was different. I was able to recline my legs and watched TV. I had no more symptoms. Not like the other nights where I was up and down and couldn't recline. So about 4 am I decided I would go back to bed. Within minutes my leg started jerking. So I am back to my recliner. Not reclining yet, just sitting here waiting a bit to see if my leg will be still. I brought my CPAP with me this time and will put it on and try to recline and see what happens. I was thinking a few minutes ago, that this seems like a nightmare. Living everyday and not being allowed to sleep. I am so exhausted right now all I can do is cry. Even though I got all that sleep earlier it doesn't feel like it now. This no longer feels like living, but just existing. I feel like I've been up for a life time. It's probably been more years than I can figure out. My memory started being affected around 2005. At least that's when I started to notice it changing. My memory is why I was forced to retire. I realize that everyone here has their own story to tell. Again, I am so grateful for the people here and this site. I've been off Mirapex 16 days now. I will try again to go to sleep.
rthom wrote:I wonder how many other folks seem to do better in their recliners and the symptoms get worse when laying prone--it seems a common comment on here.
I wonder if it's not the confined space. I do better on the couch - and others have said the same. I am fully prone, but I can use the end of the couch to position my legs so the muscles are tight. In a bed, there is nothing to press against.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
I understand what you are saying. I tried the recliner full time awhile back. It worked ok, I guess. The thing is I missed being in bed with my husband. It seemed like we were never together. He spends most of his days and nights in bed because of his illness. Then when I went back to the bed it nearly killed my back. It took awhile before my back finally stopped hurting. Actually I was thinking about it last night when it happened. I thought maybe it was the position of my back and body not being totally prone. I've always thought that my back was what started my WED/PLMD. My WED/PLMD started when my back started giving me problems in my 30's. I'll think about it.
debbluebird wrote:I understand what you are saying. I tried the recliner full time awhile back. It worked ok, I guess. The thing is I missed being in bed with my husband. It seemed like we were never together. He spends most of his days and nights in bed because of his illness. Then when I went back to the bed it nearly killed my back. It took awhile before my back finally stopped hurting. Actually I was thinking about it last night when it happened. I thought maybe it was the position of my back and body not being totally prone. I've always thought that my back was what started my WED/PLMD. My WED/PLMD started when my back started giving me problems in my 30's. I'll think about it.
I think there is a sizable minority of people whose WED started from back issues. It would make sense that position could be very important.
I also hate sleeping alone, but not as much as DH does! He is morose, lol. But, since he cannot use his C-PAP currently (nasal issues with the pillows and air/bloating issues with the full mask), I can't handle his snoring. Because my symptoms are better on the couch, I've opted to give him the lovely king bed!
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Thanks Ann for your support. It means a lot to me. I've had a miserable day. Yesterday was so nice. This evening has been better. I just didn't take any extra meds during the day. I wanted to save them for the night. I might just sleep in the recliner tonight since I'm so tired. I'm counting the days. I see my PCP Monday. I'm going to get the script for the Neupro patch. I still have my doubts about it but I am just done. But I'm interested to see how much it will cost. You have to have a script before they tell you the cost. I don't know if we can afford it. Then Thursday is my appt. with the ortho. doc. I keep thinking about the impending hip surgery and I'm not looking forward to it. My husband will have meds with him just in case it doesn't go well at the hosp. I know that's illegal, but the last time was a nightmare. They had me loaded up on Valium 40 mg, which was horrible. Then left me like that when I was at home. It just didn't seem like I had a doctor to really follow up. That was when I augmented on Mirapex and they didn't know what to give me. They wouldn't do the good opioids. I'm also thinking that I will have to go to a rehab for at least a week. Since my house is so small it will be hard to get around the bed and to the bathroom, etc. until I can get around a little better. I don't know, maybe this stress is probably not helping either. Then I read about other people who have it worst than me. I really feel for those people.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Finally had a good night. I just thought that I should report the good nights, as well as the bad. I slept from 1:30 am to 3:30 am, then 4 am to 6 am, then 8 am to 11 am. What makes it so good was the 8 to 11. Three whole hours and I didn't wake up to WED/PLMD. I did mess up though. The 4 to 6, I fell asleep without getting my CPAP mask on and woke up to severe PLMD. I believe now that when I don't get my mask on the PLMD really gets bad, since I'm waking up 90 times an hour, so no rest during that period.
debbluebird wrote:Finally had a good night. I just thought that I should report the good nights, as well as the bad. I slept from 1:30 am to 3:30 am, then 4 am to 6 am, then 8 am to 11 am. What makes it so good was the 8 to 11. Three whole hours and I didn't wake up to WED/PLMD. I did mess up though. The 4 to 6, I fell asleep without getting my CPAP mask on and woke up to severe PLMD. I believe now that when I don't get my mask on the PLMD really gets bad, since I'm waking up 90 times an hour, so no rest during that period.
I've read the PLMS goes away most of the time in patients who use their CPAP/BiPAP. My husband has it very, very mildly when using his machine - he doesn't awaken. But, when he's not using it, the leg movements are worse and much more frequent.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
debbluebird wrote:I've read the PLMS goes away most of the time in patients who use their CPAP/BiPAP. My husband has it very, very mildly when using his machine - he doesn't awaken. But, when he's not using it, the leg movements are worse and much more frequent.
My wife says the same for me that if I use machine I have much less leg movements during sleep. I think when I stop breathing because my tongue relaxes and cuts off my windpipe that I also jerk my body and without VPAP it happens about every 30 seconds. With VPAP mask on my airway seldom closes at all so I also don't move.
Here is to many more good nights