Insomnia

[debbluebird]

Other opioids like Oxycodone or Morphine don't increase the Qt-interval.

Methadone can indeed be very problematic regarding the cardiovascular system which is why I don't understand why so many physicians in the U.S. prefer using Methadone as first line opioid for RLS when many other alternatives are available.

I have central sleep apnea as well as obstructive. Plus we live at altitude, 8,000 feet. Methadone is the only one that has worked for me. Last night was better.

[QyX]

Oh wow, so you already tried all the other major opioids available for prescription?

[debbluebird]

Oh wow, so you already tried all the other major opioids available for prescription?

Yes

[debbluebird]

I changed the methadone around. Instead of adding 5mg every other night, I added 2.5mg every night. So I take 5 mg every 8 hours plus 2.5 mg sometime during the night. Whenever I happen to wake up. So total is 17.5 mg every 24 hours.
I am sleeping most nights without spasms or RLS. It's a real treat. Averaging 8 hrs or so. The only thing is, I don't feel very good during the day. I have some energy. I don't know how to exactly describ how I feel, just not well.

[Polar Bear]

I wonder are you feeling physically not well or emotionally not well.
My guess is it's a bit of both . Fighting a chronic condition is endless. Getting a few nights sleep is great but it takes more than that to take us up the road of wellbeing.

Don't expect too much from yourself.
Could you be coming down with something...... Unrelated to RLS or your spasms.

[debbluebird]

No it doesn't feel like coming down with something. It feels like I need sleep, or that I'm still not getting enough sleep. Then every few nights I'm still awake all night. Last night was one of those nights. Oh well.

[Polar Bear]

Being awake all night is so debilitating.

Even when you are getting 8 hours sleep you are still feeling that you need more sleep, sounds like you are not getting good quality sleep.

[debbluebird]

I know now that the bad feelings I'm having are my need of sleep. You're right, even though I'm getting a lot of "hours", they are not good quality.

[debbluebird]

I slept from about 8 pm to 9 pm. I was watching TV, realized that I fell asleep, got up, got ready for bed. I was still sleepy so I was able to go to bed. Then slept from about 10 pm to 1 am. My husband was up and about at 1 am. The sounds woke me up. Then I had to wait to use the bathroom. We only have one bathroom. I know it sounds weird, but if I can go right to the bathroom, get a drink, or if I have to take a pill, fill the water on my Bipap machine, and go right back to bed, I usually can go back to sleep. I don't talk to my husband. Talking wakes me up. But if I am delayed, I get too wide awake, I can't go back to sleep. I call it missing my window of getting back to sleep. So I have been awake since 1 am. It's now going on 5 am. I've tried a few times to sleep.
No RLS and no leg spasms, yeah ! Just wide awake.
I truly believe that taking opioids contribute to insomnia.
Life before RLS and leg spasms I went to bed at 9 pm almost every night. Sometimes even earlier and slept on average 9 to 10 hours. I'm the kind of person who just needs more sleep than most.
Life after RLS, leg spasms, and meds, crap sleep. I never know when I'll be going to sleep, how long, and mostly fractured. I'm up every 1, 2, 3, or 4 hours. Thank goodness I don't have to work.

[Polar Bear]

Deb.... I don't have spasms but could pretty much have written your post.
My rls symptoms are pretty much under control at present, some breakthrough but nothing awful and I can either walk it off or a pill will help.
However, the insomnia is such a problem. But if the opioid helps my crawling sensations I'd rather be awake without them than awake with them.

Like you, I don't have to work, I am retired 10 years but can well remember the days of going into the office without having slept and working like an automoton.

[QyX]

I truly believe that taking opioids contribute to insomnia.

You don't need to believe it. It is a common side effect of opioid therapy and it seems RLS patients are especially sensitive to the stimulating properties some opioids can have on some patients.

Methadone is known for pretty bad insomnia, together with Oxycodone.

Morphine is way more sedative. For several months, it almost worked like a classic sleeping pill for a while.

For me, it took around 4 years until the insomnia side effects of opioids disappeared. However I still have insomnia. But thanks to Cannabis, it is now mostly about the time when I am able to fall asleep and not if I am able to sleep in general.

[debbluebird]

I can't take Morphine. It makes me itch terribly. Thank goodness I don't have insomnia all the time.

[QyX]

I can't take Morphine. It makes me itch terribly. Thank goodness I don't have insomnia all the time.

Hydromorphone is still an option. It was causing way less insomnia than Oxycodone was.

10 mg of Oxycodone equal about 4 mg of Hydromorphone.

But I also have to say that Hydromorphone was long-term not nearly as effective for my RLS as Oxycodone and Morphine was.

[debbluebird]

I can't take it either. Side affects are a fine line for me. Morphine and the derivatives. Not just itching, but vomiting too.

[Polar Bear]

This post isn't about medications, but it is about Insomnia.

When I talk about my isomnia this can be caused by several factors, rls symptoms, or waking up after about an hour's sleep, with no rls symptoms and just being wide awake with eventually, 2 or 3 hours later, the rls creepy crawlies gradually being felt.

My husband will snore regularly and sometimes this will waken me. Again I am well awake and get up and amuse myself util I am ready for bed again. I also read myself to sleep and so will go back often to a guest bedroom and not 'our' bedroom.

My husband has always been very supportive during some really dark days and evenings, he pays attention to any programmes about RLS. He doesn't actively do research on rls but will readily read and take on board anything I would draw his attention to.

I reckon there has to be quite a bit of disturbance when I am going from one bedroom to another, getting up and down, but my husband says it's ok.

Recently he has been sleeping poorly himself, waking up and unable to return to sleep. I also snore.
A couple of nights ago I wakened him with my snoring (I thought ladies didn't snore ) and he was clearly pretty frustrated as evidenced with lots of muttering of the colourful sort. Now.... if I am wakened by his snoring I just move to another room. I don't see why he couldn't just move to another room instead of being a martyr about it ... and told him so. His outburst was pretty out of character, he can be pretty impatient,
think other road drivers) but not really with me. Anyway, apology etc and back to bed.

Next morning I brought up the subject. He didn't really want to talk about it but I can be a bit of a Jack Russell terrier and not let the thing go.
And so it all came out.
My husband who I thought was generally getting a great night's sleep and was pretty much undisturbed by my years of nocturnal meanderings ... was anything but. He says he couldn't very well complain about his lack of sleep (actually mainly because of me snoring, plus my regular ins and outs of the bedroom), when he thought his poor sleep was nothing in comparison to my years of lack of sleep. Also, when I snored he didn't like to give me a nudge in case it woke me up. It was at this point that I reminded him that a nudge is much more gentle in nature than noisily leaping out of bed like a squalling frustrated cat !! I'm actually laughing at it now, but I wasn't at the time. He says he wanted to avoid going to another bedroom in order to sleep as he felt it was not how it should be for a married couple.
Bear in mind I've been doing this for years anyway.

Eventually I got him opened up on it, how he didn't think it was good for intimacy. As if his caterwailing of FFS was good for intimacy.

I've rambled on a bit here. What I want to say is that if there are any sleep issues then couples need to talk.

We definitely had to have that conversation. I hadn't a clue that he was sleep suffering to the extent that he was. He was biting his tongue not wanting to annoy me and becoming resentful.

So, with regard to intimacy and using the other bedroom. If one of us wakes the other, the one that gets woken should have no hesitation in moving 'next door' to get some sleep. We both understand that it is no reflection on the state of our relationship. Sometimes these things need said aloud.

I told him today that he awoke me last night with his snoring and I considered jumping loudly from the bed with gay abandon and calling out FFS, but wasn't convinced he would see the humour..... he assured me that he would have seen the funny side of it.

Please, as in all issues in life, keep talking - with kindness.