death is the answer?

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badnights
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Post by badnights »

Back to this thread again. My life story, of sorts. I am scared to go to bed because if I don't take a zopiclone I simply will not sleep, all night; I will be in Stage 1 all night. I'll get up once an hour. If I'm lucky I will fall asleep at 8:30 and have an hour or two of real sleep.

If I take a zopiclone, I will sleep thru the night with only a few awakenings, but I will need a nap within 4 hours of getting up, and my doc doesn't want me to take the zopiclione too often anyway.

I keep wanting/expecting something to get better and stay better. So I start acting as if everything is getting better- because I think it should be. I mean, I'm taking hydromorph contin and (once they upped the dose to 12 mg) it killed the RLS completely for 3 weeks, but I was still tired all that time! And now I'm starting to get the RLS symptoms again, in the morning and in daytime naps. It's still not bad, not at all. But it's creeping back....

I was diagnosed with possible UARS (upper airway resistance symdrome), and I've been waiting to get the RLS under control so I can do a CPAP trial. I really thought the RLS was the big bad guy. But now that it's controlled so well and I still can't sleep .... I don't know if this breathing thing is a serious bad guy too, or if I just have the insomnia that seems to come with RLS territory.

Ha! I'm scared to go to bed! And I'm really scared of when my sick leave runs out. A guy is supposed to call me about the CPAP this week - only 2 days to go, because Fri is a holiday. Fingers crossed.

Now to try bed.

Polar Bear
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Post by Polar Bear »

I also do not sleep even tho my rls at present is somewhat controlled. I take zopiclone and sleep for an hour, am up and awake for a couple of hours, then back to bed. Sometimes I also take a zolpidem around 4am but don't have many of them left. I reckon it is insomnia built up following a long long poor sleep pattern when the rls was not as well controlled.
Betty
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badnights
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Post by badnights »

That's what I've read... that the insomnia derives from bad sleeping habits. But I wonder if there isn't some component of the RLS characterized by hyperalertness, that isn't affected by the meds that deal with the abnormal sensations.

I am really honestly going to go to bed now...

Neco
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Post by Neco »

Try and get some iron into you, even though your RLS is mostly under control.. The fact its coming back is a bad omen.

My issues with addiction almost seem trivial compared to those who have to increase their dose because it keeps coming back.. I've never had to do that, really.. And the little bit I get every now and then is easy enough to shrug off and sleep through..


Eat some greens heavy in iron if you can.. Maybe it will make a difference? Spinnach, Broccoli, stuff like that I guess? Iron fortified foods would be good too I guess. Anything easy but not very filling (or filling for long). Cream of Wheat or something like that should have good iron and make good snacks meals.

I can't remember if your ferritin has been tested or not, and if so was normal.. Is it normal? Been tested? Its still possible you could be aneamic, that would explain the tiredness perhaps.

I was always sleeping in my teens, at school, after school (I could come home and be in the middle of playing a game and still fall asleep). Got tested but nothing seemed wrong. Although in my case it was probably because of my whack schedule due to my insomnia. I was almost never in bed before 11pm

badnights
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Post by badnights »

Thanks Zach. My serum ferritin was 58.9 back in June, but I was taking 300 mg ferrous gluconate daily then. The doc said to discontinue, since my ferritin was fine. I remember thinking, maybe it's only fine because I'm taking iron, but I stopped anyway. Things have gone to hell in a handbasket since then, come to think of it. Maybe coincidence.

I just popped a pill; won't hurt to start again. I just got blood work done but my new family doc didn't ask for ferritin because she doesn't know she should, and I didn't think of it until I had left the office with the form.

Why not very filling, Zach? So you can eat more and get enough?

I broke down and took 3.25 mg zopiclone last night. What's so bad about taking it every night anyway? At least I sleep a bit. How can some paltry little addiction be worse for me than forever never sleeping deeply?

Do you think you were tired as a teen because of RLS stealing your sleep? We don't seem to really notice it until we start focusing on it. Were you aware of it by that point in your life? Teens need super-lots of sleep anyway, and never get enough because of social pressures, and are expected to perform in the mornings when the typical teen circadian cycle is at a low point. Add RLS to that .... ugh!

Neco
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Post by Neco »

I did not have RLS symptoms until after I turned 21. I actually think it was my initial exposure to opiates for dental pain that triggered it. But I've never bothered to research triggers as everyone has their own theories, but it is one I'd heard at some point.

However I have always had lifelong insomnia, it really messed a lot of things up. Could not hold a steady job at all when I started trying to work. Had issues with not being able to sleep before important events, all kinds of stuff.

Even until the past year or two, I had trouble sleeping. However once I started taking Methadone, I have had no problems at all. I'm not sure why.. Maybe its the fatigue some people complain about, but for me its just right? I can easily go to bed at 6 or 7pm, although I usually go to bed around 8 or 9 at the latest. I usually wake up at 4 or 5 for work any given day, so it can be a little hard to get up.

Today I got about 1/4 of the way there and felt like crap (no idea why) so called in sick and came home. Slept until about 8:30 even though I woke up several times.


I say eat stuff "not filling" so you can potentially eat more, yes. Or at least snack multiple times during the day without ruining your big square meals.

ViewsAskew
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Post by ViewsAskew »

Zach wrote:Maybe its the fatigue some people complain about, but for me its just right?


I would give a LOT for some of that fatigue right now. I started the 4th opioid in 4 months and it, as the other three and also methadone, wires me. I was fine with 2 mg (Dilaudid), even a but sleepy. But it wasn't enough for the RLS. So, next dose I took 2 (I am allowed up to 8 mg per 4-6 hour period). This time I was slightly awake. But, again, didn't control the RLS completely. After 90 minutes, I took one more and headed to bed. I used the heating pad to get to sleep figuring once it kicked in, I'd be fine.

Yep, the RLS was gone, but in an hour I was wide awake! I did fall back to sleep, but kept waking every 50 minutes or so. Within 3 more hours, the RLS was back, so I just got up and stayed up.

Seems the smaller doses do what they typically do but the larger doses have a paradoxical effect.

So, bring on some fatigue! (But only at night when I'm supposed to be sleeping!!!)
Ann - Take what you need, leave the rest

Managing Your RLS

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Neco
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Post by Neco »

I have the same problems with higher doses of Methadone.

Although pretty much any opiate will also do that to me if I take enough of it.

I guess that's why its called paradoxical :p

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Post by SquirmingSusan »

Beth, I don't know if there's a problem with taking a sleeping pill every night or not. Lunesta (related to zopiclone) is advertised to be safe when taken every night on a long term basis. But my experience is that it stopped working after a couple nights, so I had to take it for a couple nights, then take a break for a couple nights. Dr. B prescribed zolpidem for me to take every night for several months. It seemed to work a bit better, but I still took a break from it a couple nights a week.

I'm pretty sure there are a lot of people who take sleeping pills every night for years and years.
Susan

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Post by SquirmingSusan »

Ann, I would happily give you some of my excess sleepiness, if that could help you get some sleep! I'm sure if you can find a med that actually takes care of your RLS without horrible side effects that Dr. B can come up with something to help you sleep. Hopefully, soon.
Susan

badnights
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Post by badnights »

Zach, I'm so glad the methadone works for you. Too many of us have problems. I too started having big problems with RLS after oxycodone exposure, but I had the RLS for a long time before that too, it just wasn't as bad.

Ann, I'm so sorry about your ongoing problems. I have noticed some hyperalertness in myself from codeine and oxycodone, but I haven't really noticed it the same with the hydromorphone. (I still don't sleep, but it's different, I doze at least, I'm not up and about.) I suspect Susan is right, but maybe you need something to deal with the awakeness now, instead of waiting, so you can take advantage of the few hours of RLS relief you get.

Susan, I will query my GP about the zopiclone, and why she's so reluctant for me to take it.

I had a really wierd night last night. I took my meds 2 hr earlier than I took them the night before, and got all nauseous and super-itchy, same as the night I upped my dose from 9 to 12 mg. But that time, I lay down on my stomach on a pillow and had a good sleep. This time I kept having wierd dreams or thoughts - couldn't tell which, and I had those jerks and hallucinations that wake me up (this time a visual not an auditory hallucination), I had the swallow thing happen, and I was still dizzy and nauseous hours later, in fact I am STILL a little nauseous now even though it's been 18 hours since the drug. I just had a hilarious thought - maybe I just have the flu! lol

Does anyone else get the swallow thing? My autmomatic swallow mechanism malfunctions when I lie down, especially when sleeping, and I jerk awake because saliva is going down my trachea. I came across it while browsing a list of parasomnias recognized by the American Sleep Disorders Association, and its official name is Sleep-related Abnormal Swallowing Syndrome. I'm full of syndromes. No known treatment. I try not to sleep on my back - when I'm on my side I eventually wake up from the puddle of drool under my cheek, but it's better somehow than drowning in my own spit. Trouble is I seem to be more comfortable on my back and often can't fall asleep on my side. Wierd, huh? I'll never find someone to sleep with me now .... :wink:

Scarlett46
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Post by Scarlett46 »

Hi Bethf. I've read back a little bit, and noticed your reference to UARS... I will have to read up on that, but wonder if that may be one of the problems that I have. I don't believe that I have what is considered "sleep apnea" because I haven't been told that I "stop breathing" in my sleep. However, I am a heavy moaner; which seems to be related to the rhythm of my breathing, rather than a dream or pain response.

And your "swallow thing..." I am not sure if this happens in my sleep (although my DH scares the heck out of me with his acid reflux - I'm really afraid that he will aspirate in his sleep one day); but something similar happens to me sometimes while I'm eating - and more often while I'm drinking liquid. Kind of like something doesn't close properly and goes up into my sinus cavity.

I hope you find a combination that works for you soon!
"After all... Tomorrow is another day!"

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Post by Polar Bear »

Beth: I have been taking zopiclone every night for about a year, Dr B says OK, and my GP has never queried the script. This replaced zolpidem which was a little shorter acting. Both of these are the sleeping meds recommended by Dr. B.

Scarlett: This occasional 'swallow not working' or something similar has happened to me tho not recently. Last year on occasion it was as tho the muscle just was not responding, nothing happened. Then after a moment or two it worked.
Betty
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badnights
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Post by badnights »

wow, that's already two others with occasional wierd swallow things. I wonder how common it is in the non-RLS population. I've always had trouble swallowing pills, I make loud noises when I swallow liquids, and my epiglottis frequently forgets to work - worse at night. These must be the things no one tells their doc about. Or they do, and get the same response I did: I was told to try not to not sleep on my back! There's no known treatment, what can they do, but if GPs took note of all these wierd things, how fascinating it would be to track their prevalence ... I guess they wouldn't be GPs tho, they'd be researchers, if they were interested in that sort of thing.

Tonight I took my 12 mg sustained-release hydormorphone capsule apart and separated the beads into 1/4 and 3/4, took the 3/4 and saved the rest. This way I am only on ~9mg, which is what I wanted. I want to have the choice to go up to 12 if I wanted, but not be forced to. I didn't realize you could safely break the capsule. It's the beads inside that you can't safely crush or dissolve before consuming. It says right in the instructions you can pour the contents on a spoonful of soft food if you can't swallow pills (! speaking of swallowing). I feel fine.

Except that it's 4:30 AM and I can't sleep because I had a LONG nap this evening (woken by RLS). I am constantly torn between sleeping because god knows I need it and staying awake so I don't ruin my schedule - which gets ruined in one bad night anyway.

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Post by Wayne »

ViewsAskew wrote:Yep, the RLS was gone, but in an hour I was wide awake! I did fall back to sleep, but kept waking every 50 minutes or so. Within 3 more hours, the RLS was back, so I just got up and stayed up.


My own personal theory on why we keep waking up even when not having RLS symptoms is because thats the pattern (or habit) you've gotten into. Sleep for 2 hours, wake up, sleep again, wake up. I will wake up at the same time everyday no matter what time I go to bed, or how tired I am, RLS or not, whether its a workday or weekend. I could be up running around all day, out late, go to bed at 2:30am and still be awake by 6:00am.

This has been the case for me all my life. My mom is the same way (no RLS for her). It took her years after retirement to get out of that pattern.

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