Have been on a high for last three weeks approx 30hrs sleep out of the three weeks....no time for acupuncture and the rls is wild,
it has been so bad I am scared to go to bed as i sleep an hour wake , then sleep and hour then rls kicks in so am up all night and the high makes my mind race so much .....and i cant sleep
ended up with emergency appt this afternoon gp has given me sleep meds first time ever as I cant go on like this....so heres hoping that I sleep tonight and the rls behaves its self....cos if it doesnt ???????
Moonlight I hope the sleeping meds are working and you're asleep right now.
If you find, as many of us do, that your RLS beats up on the sleeping meds, be careful walking around while groggy! it can be dangerous. And prepare to discuss next steps with your GP.
Bethf I had three hours sleep last night the rest was messed up by the rls. Am honestly wondering how I'm going to sleep, if the sleep meds can make the rls worse
Tonight I've to take two tabs so hopefully will sleep right through...well six hours at least.
Up till the afternoon I was like drunk and dizzyish very weird feeling so only hope tomoz will be ok after taking two.
I see my pdoc on monday and I know she will want to discuss my lack of sleep.
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.
Moonlight,
Gosh, I feel for you, so little sleep for so long, I know you must be at the end of your rope! I do hope the little sleep meds they gave you will knock you out for hours and hours straight. Plez do give us an update on how well they worked!!
Ummmm, tell us again what medication you are on for RLS? Seems like I recall you have had lots of trouble getting proper relief from your symptoms. I'm SO glad you will see your primary doc Monday. Maybe they can review what you're on and add something new that will kind of finally put the RLS in its place and help you relax and sleep, on top of the sleep meds even. I just think your basic RLS meds are not good enuff, they need to add something to it.
I am worried about you, your posts are always filled with how much your legs bother you, and yet the docs are not hearing you. Maybe bring someone with you who knows how hard things have been for our Moonlight, to perhaps sway the doc to do more for you in the way of meds. Your quality of life is important, and when there is SO much information out there about proper treatment of RLS, no doc should be reluctant to take this bull by the horns and put it in its place. Here is one of my favorite websites, it's a U.S. government one, easy to print and give to your doc:
http://www.ninds.nih.gov/disorders/rest ... s_legs.htm GG
"It's not how old you are; it's how awful you feel."
moonlight, I might have been misleading in my previous post. The sleep meds don't make the RLS worse. It's just that, they don't help it at all either. So if you take a sleep pill, and then the RLS decides to have its way with you, you will
1. have to move because of the RLS, and
2. be all groggy from the sleeping pill. That's a dangerous combo.
A lot of doctors think that they can treat RLS with a sleeping pill, because they see it as a problem of sleep. But it's a problem of abnormal sensori-motor signals, so even though it ends up affecting sleep (severely), any treatment directed at sleep will not improve the RLS, and the problem will remain.
This gets confusing, but a lot of RLSers have trouble sleeping too, so they do need a sleeping pill - but that's in addition to other meds that help the RLS. It's of no use if the RLS is not treated first.
Please DO discuss the impact that this horrible lack of sleep is having on your life, and consider getting it medicated ASAP, or getting a change in your pain meds so they cover off the RLS too (that's if you're seeing the pain clinic for something other than RLS) - the long and short of it is that your RLS needs to be treated because you're going through hell. You probably can't think straight right now because of chronic lack of sleep.
update the sleep meds ...I have had two nites at 2hrs , one nite at 3hrs and one nite at 4 hrs then was awake bright as a button...rls not too bad codeine still works if rls isnt going too crazy.
Lack of sleep is mainly due to the bioplar high to get to sleep then the rls to stay asleep.
To add insult to injury the zoplicone has triggered my asthma.
saw my pdoc shes not happy bout my lack of sleep, not happy my moods are not stable....ive agreed to see the mental health pharmacist at the hospital to possibly start a three month trial of a mood stabiliser....am very apprehensive cos of long term side effects.
dogeyeg I'l look at the site thanks
will go now cos dont feel great.
thanks guys
last night lay awake till 3.30...I mean totally awake , had taken one codeine at 10pm, amazingly the rls did not kick in at all???? all night.
Got up at 7.30 ended up at gp ....have got a virus ....and it will just take time to go...well thats good news She wasn't surprised to hear that the sleep meds weren't really working she said my minds racing too fast and I really do need mood stabiliser to slow down.
I have decided that things are going to have to change I'm going to have to loose my paranoia about drugs and understand that the doctors arent actually trying to kill me , ok I know that sounds ott, but I have one crazy mind....basically I'm going to have to trust them......big big step
I don't know how much sense am making , if at all any..but I live in fear of medication , as a lot of folk here know....have got to stop , take a step forward and change my life. Am really sorry to go on and on , I only talk here but you all must be fed up with me and want to shake sense into my head.....and I don't blame you.
Today am a lot calmer, 4hrs sleep a night will keep me going ok till my next pdoc appt which will be in a few weeks.
was also told by pdoc on monday am not allowed to drive till I get sorted out......wot a bummer....so lucky av got a free bus pass or I'd be trapped as I stay in the country with very expensive busses..
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 am totally with you in understanding the lack of sleep and how it affects you. Many nights I am awake, no rls symptoms, just not sleepy and that's after taking a zopiclone. Or sometimes the zopiclone gives me a couple of hours sleep then I'm awake for 3 or 4 hours.
However recently has been better. I still awaken for maybe 30 - 60 minutes but that is still much better than it was. Going over to sleep has been much easier and this is because I have been using an ipod. I mentioned this in a thread recently. I didn't even have an ipod and son gave me one he had lying about.
I usually read a little and then lie down to sleep with my earphones in place and listen to an audio book which I downloaded via itunes. I truly am asleep within a few minutes. When I wake during the night I often do the same again. Just fall asleep and the earphones fall out at some time . Often I just listen to the music on the ipod played very softly. Loaded about 12 of my favourite CDs onto itunes and then onto my ipod. Again sleep comes much easier. This of course is dependent on my rls symptoms behaving themselves.
My d-in-law has suggested that it may be a case of being similar to 'white noise', you know how a baby may fall asleep to the sound of a washing machine or a vacuum cleaner.
Fingers crossed that this continues to work, but I thought it worth mentioning again. Doesn't cost anything to try it.
polar bear.....thats my routine too.I read, then have an under pillow speaker and listen to my music and my relaxation.....now am wearing my battery out on my mp3 player ...still no sleep.
Moonlight,
I am proud of you for seeing the doc, and that they are going to try SOMEthing to get your moods more stable. I did not find your posts a lot of nothing, matter of fact I am relieved to hear all about what is going on with you, the details help us understand and make it easier to give encouragement and advice.
I take a bunch of medicines, but I've never minded. I didn't take any medicines at all until I reached 50, altho I did have to take some stuff after my car wreck when I was 20, but just for six months. Now I take five medicines: antidepression drug, tranquilizer, pain killer for RLS, nerve pain medicine for busted-up back, and an irritable bowel pill once in a while.
Now I'm on chemo for cancer, now THAT'S a huge pain and I have to take several other medicines to combat the side effects. I had said before that so far the poisons haven't bothered my legs, but that's all diff now. My legs are absolutely killing me, and my feet I can barely walk on, and talk about sleep problems!!! For about five nights I've had the most awful nightmares and I hardly ever dream, and I keep waking up feeling like I've been all beat up by somebody with a frying pan, and I'm going out of my mind. Fevers, too, but not enuff to go to hospital, got to get up to over 100 to be officially wiped out, which I'm at around 99.5 or so.
Why am I talking about myself? I'm sorry. But it's just here you are laying awake, and so am I, and my legs are driving me nuts, and I really do feel I may be losing it in the head. Sigh. I think I will require my cancer surgeon to sit down with me and shore things up a little better.
I hope, dear Moonlight, that soon you get this thing down to a dull roar, and sleep is VERY important, so glad someone is looking into it and trying things. If you don't like how a drug works, tell the doc so, and try something diff. Tranquilizers are supposed to be good for RLS and just might relax you enough to sleep better, maybe that combined with your codeine would help, I don't know. GG
"It's not how old you are; it's how awful you feel."
Wow Dogeyed you are a fighter and an inspiration and of course you can talk about yourself, I believe it helps and I really hope things get easier for you .
I have just found out why I feel so awful along with the insomnia I have a virus and a temp.Last night was the worst so little sleep I had lost co-ordination to do things .....horrid....the hospital said to double the zopiclone and treble the diazepam,which made no diff still no sleep..so i took another nine diaz and slept for three hours.
my gp has changed meds to temazepam and codeine , to not panic bout the sleep she says it will happen , not over night ....but it will happen.
Am sleeping on the settee as its the easiest for the rls ..which is behaving its self fotrunately.
Moonlight,
That drug combo just might work! But gosh, you getting a virus, that fever thing is a very bad situation. I have thought this whole week that I'm losing my mind from fevers. The only thing I can figure is I didn't drink enough water, chemo folk have to drink extra water. I don't know, it's as confounded as the RLS thing, no matter what you do, it's gonna bite a person in the behind, depending on how many cars are on the road, the price of tea in China...
GG
"It's not how old you are; it's how awful you feel."
and the rls is wild,
