A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

[ViewsAskew]

Any illness is hard on a marriage, family, children, whether you can see it or not, whether is has something you empathize with or not. But, I do think that ones that are more nebulous, as in, "But you don't look sick," are harder still.

I find the drugs create mood changes, along with the sleep deprivation, that make me wonder why I'm not single. If I were my husband, I'm not sure I'd have stayed.

I sometimes wonder if some of us who have a hard time with the drugs - side effects, augmentation, not finding the right combo - would be better off without any drugs at all. My grandmother did that for 30 years. She slept from 3 or 4 AM to 7 AM - at the most - each night. She stayed really busy during the day, cooking, cleaning, playing baseball with the kids, whatever it took to keep the creepie-crawlies away. At night she paced, danced, beat her legs - and finally it stopped enough that she could sleep.

Is that better? It sound exhausting and I can't help but recoil at the thought of NEVER sleeping well again. But, I also recoil at the thought of slowly losing myself to crappy moods, bad relationships, and loss of self.

Guess there are no easy answer in this game, are there?

EeFall, whatever you both decide, I hope it brings you both what you need.

[cornelia]

Eefall,

I'm thinking you might want to write a letter to your wife saying that you can't go on like this and that you are seriously considering of finishing the marriage. Tell her again how you feel in a nice way. Tell her that you continue to love her but that you have to make a choice to make not only yourself happier but her too. She can't feel happy now I guess.
And then see how she reacts. Maybe this idea is not right for you but I think this would be my way to do it.

BTW: why didn't you get any sleep? Was it incidental? I hope not that you have to up your meds again after all the trouble you had with the drug holiday.

Wish you the best. Life for us in insanely difficult.

Corrie

[Polar Bear]

I've had a thought with regard to Corrie's idea of writing a letter. I am always 'all for' making notes and putting stuff on paper.
If you wrote a letter then you can edit it, and re-edit it until it says what you want to say.

However, I have found that it is very easy to misunderstand the written word. What one person writes is not always what the other person reads, there is no tone or phraseology to the sentence and misunderstanding can occur.
This might sound daft, but what about writing the letter ...... and then read the letter to your wife asking her to say nothing until you have finished. That way the words are given tone and love and can be said in a loving manner. And then, give the letter to your wife. (And keep a copy).

Sending positive thoughts to both of you.

[debbluebird]

Sounds like your depression and lack of sleep is talking. I'm sorry for your current situation. My only suggestion is to talk to her before you act. It also sounds like she is not understanding your words or your condition. On the other side of the coin, how is she feeling? I don't know if there is a right or wrong answer to your situation. I just know that all of us feel your pain.

[cornelia]

It's agood and warm thougt you add Polar bear.

Corrie

[EeFall]

It is 5:10 am in the morning and I have not gone to bed at all. I have been up most the night and have drifted in and out of consciousness. I have just read all of your letters and as a whole they are all filled with meaning that shows that all of you have great understanding and heart. Yesterday when my wife woke up we actually got along for the day. I have to commend her for being like you all too. She has to be very loving and caring, she totally ignored my rantings and ravings from the day before and treated me as though nothing had happened at all. I must seem a total madman to her sometimes, and maybe I am, I probably wouldn't last long by myself to tell you the truth.

Once, years ago, I had to live in the Los Angeles area working by myself for almost a year, while my wife and son stayed in her home town living in a rented house. They came to see me a couple of times, I don't believe I was able to get away at all, I was working on a top secret military plane and couldn't even tell my wife what it was. When I eventually quit the job, due to loneliness, I arrived home so skinny that many of my friends and family gasped when they saw me . I had not taken care of myself much I guess but it didn't take too much time before I had meat on my bones again from good home cooking and also people taking me out for meals , anyway, I spent the time working, reading, and walking while by myself and that was about it.

Thank you everyone for "talking" to me. Something is terribly wrong (again) with my health. Why am I not sleeping? I am in the middle of a two week holiday from work, I should be sleeping like crazy, instead I didn't even attempt to go to bed last night. The night before my wife had to tell be to put my VPAP mask on because I had gone to bed without it. Didn't do any good though because I only was in bed a few minutes that night when I realized that I was restless and got up. I hate "waking up" to the fact that I am an idiot (again), if that makes any sense. I sink into this hole of despair when the meds don't work and forget that it is probably because the meds are not working. I lose my ability to perceive the obvious, although I now see it thanks to you all. I am going for a post-it after finishing this and writing down that I got to fix my meds immediately! I'm glad I am not working for sure or it would have been a real mess. Thanks all.

[Polar Bear]

[debbluebird]

For several weeks I've been on two and mostly three tabs of Methadone 5mg each in 24 hours. Then for the last three nights, the itching began. Also I was having some WED in the evening which caused me to take a Methadone early, causing me to have three to four at night. So last night I was determined to only take two. One around 5 pm and the second around midnight. I try to space them out. By 2 am or so my leg started in. It hasn't done that in several weeks. So I am in again an increase in WED/PLM. So I got up and got into my recliner. It immediately went away. But of course I don't have my CPAP there. I'm hoping to get a second machine soon. One is on order. Beside the usual swing of the ups and downs, I'm wondering if part of the problem is the Methadone. My body wanting more Methadone. I do know that people slowly increase their doses for the drugs. Again, I'm determined not to take more. I decided that I will just get up, instead of taking more. I can't tolerate the itching on my face under my chin strap.
Right now my husband is reducing his oxycodone. He takes it for neck and back pain. Has been on it for about four years. He decided to go through the withdrawal in order to reset his receptors, so he can lower the amount that he takes. His usual dose is a total of around three to four tabs, 7.5 mg per tab. He is going through hell. The withdrawal is worst than his pain, and his pain can get pretty bad. He has many herniated and slip discs, as well as bad arthritis. He goes from anger to anxiety, pain and generalized discomfort. I don't know how long he is going to last. He is down to two tabs in a little more than 24 hours.
Around here life is was it is. I have my WED/PLM and he has his pain. When we have an issue, we mostly just let it go. Forget it and move on. We don't go back over it. If we can make each other laugh once in awhile, that's a good day.

[ViewsAskew]

Beside the usual swing of the ups and downs, I'm wondering if part of the problem is the Methadone. My body wanting more Methadone. I do know that people slowly increase their doses for the drugs.

Some people never increase. Others seem to need to all the time. I'm in the latter camp. I started at 10, then 12.5 (because I wouldn't go to 15), then 15, then 20, then that stopped working and spent over a year not sleeping because I wouldn't increase....

Then I freaked out and stopped all opioids for awhile. But, there isn't anything else that works.

That was almost 4 years ago. I'm still at 25. The only way I can stop the eventual increases is to not take it every day. For a couple years, I alternated pramipexole ever other day or every third day. I actually decreased the methadone to 20 on most nights and 15 occasionally. Eventually, I had to stop that because of the mood swings from the pramipexole. But, within 6 months, I wanted an increase in methadone and needed 25 all the time again.

I've added pramipexole back in only because I don't want to go down that road again. But, I HATE it. Truly.

I don't know if adding pramipexole is "right" for anyone else - I just know that I've augmented on 4 different DAs, all in a week or less, and I can still do this without any augmentation. I have no idea if anyone else could. It took me years to get the courage to try it.

The only other way to do it, if only opioids work, is to take a couple days off each week and take nothing. I just can't convince myself to do that.

The rock and hard place, so it seems.

[badnights]

eefall, maybe your solution will end up being some form of daily alternation, like Ann does. Try to figure out which med is doing what to you, for a start.

For example, for me, I am pretty sure the opioid I take is sending me into high alert every night. I experience a subversive desire to stay awake despite my zopiclone, and I end up reading entire chapters that I don't remember. I can spend hours bumbling around the house forgetting what I was about to do. If I think, screw this, and don't take the zopiclone, I don't sleep at all. I am trying to overcome the subversion and force myself to take the zopiclone and go right to bed, as soon as I am sure the WED sensations are quelled. Even so, my day is creeping forward, and I now sleep 3-4 AM til noon on days off.

Have you tried sleeping an off-schedule like that? You can try that while you're on holidays, as long as your wife understands what you're doing. It's impossible to think straight or make good decisions (or recognize what is causing the bad decisions and bad moods) if you aren't sleeping. However, if you've already tried that and can't do it, then we have to think of something else.

[EeFall]

For several weeks I've been on two and mostly three tabs of Methadone 5mg each in 24 hours. Then for the last three nights, the itching began. Also I was having some WED in the evening which caused me to take a Methadone early, causing me to have three to four at night. So last night I was determined to only take two. One around 5 pm and the second around midnight. I try to space them out. By 2 am or so my leg started in. It hasn't done that in several weeks. So I am in again an increase in WED/PLM. So I got up and got into my recliner. It immediately went away. But of course I don't have my CPAP there. I'm hoping to get a second machine soon. One is on order. Beside the usual swing of the ups and downs, I'm wondering if part of the problem is the Methadone. My body wanting more Methadone. I do know that people slowly increase their doses for the drugs. Again, I'm determined not to take more. I decided that I will just get up, instead of taking more. I can't tolerate the itching on my face under my chin strap.
Right now my husband is reducing his oxycodone. He takes it for neck and back pain. Has been on it for about four years. He decided to go through the withdrawal in order to reset his receptors, so he can lower the amount that he takes. His usual dose is a total of around three to four tabs, 7.5 mg per tab. He is going through hell. The withdrawal is worst than his pain, and his pain can get pretty bad. He has many herniated and slip discs, as well as bad arthritis. He goes from anger to anxiety, pain and generalized discomfort. I don't know how long he is going to last. He is down to two tabs in a little more than 24 hours.
Around here life is was it is. I have my WED/PLM and he has his pain. When we have an issue, we mostly just let it go. Forget it and move on. We don't go back over it. If we can make each other laugh once in awhile, that's a good day.

You sound like you are still riding the roller coaster like me. I guess there is no relief in sight. My wife has her problems too with the broken leg thing. She worked for the first time in 2 months, they asked her to come back for a day and she did, it was a good thing she retired, her foot took a few days to get back to normal, it puffed up and hurt her. Hopefully she will get her first check in another week that should be retroactive to the time she actually retired.

I increased my Lyrica by 50 mg at night and my methadone by 5 mg per night and just took the first higher dose. I hope it works. I don't mind taking more, I just want it to work. I have to be able to work, there is just no way around it until I turn 62 unfortunately.

[EeFall]

eefall, maybe your solution will end up being some form of daily alternation, like Ann does. Try to figure out which med is doing what to you, for a start.

For example, for me, I am pretty sure the opioid I take is sending me into high alert every night. I experience a subversive desire to stay awake despite my zopiclone, and I end up reading entire chapters that I don't remember. I can spend hours bumbling around the house forgetting what I was about to do. If I think, screw this, and don't take the zopiclone, I don't sleep at all. I am trying to overcome the subversion and force myself to take the zopiclone and go right to bed, as soon as I am sure the WED sensations are quelled. Even so, my day is creeping forward, and I now sleep 3-4 AM til noon on days off.

Have you tried sleeping an off-schedule like that? You can try that while you're on holidays, as long as your wife understands what you're doing. It's impossible to think straight or make good decisions (or recognize what is causing the bad decisions and bad moods) if you aren't sleeping. However, if you've already tried that and can't do it, then we have to think of something else.

I know of the "subversive desire to stay awake" and it is methadone for me. The Lyrica tends to make me to want to sleep. Like I mentioned in my post before this I have increased both and will try it a few days and see what happens. I have a feeling that it is not just a tolerance thing but that my RLS is getting worse. I am surprised that I have actually been doing so well since this summer when I detoxed. I can't believe we continue to make plans as if I can just continue to work forever, maybe it is human nature...

[debbluebird]

I don't think my WED/PLM is as bad as some of you guys. I took my one methadone and I have been itching all evening with some WED. That's what pretty much keeps me from taking more, the itching. I usually don't itch like this with just one. I seem to becoming so sensitive to meds. There is just no way that I can take more of anything. I've had those high doses and it was awful. I was a mess. I'm just afraid that as my arthritis get worse the WED/PLM will too. That's seems to be the pattern. I just wish there was an answer for you EeFall.

[ViewsAskew]

I don't think my WED/PLM is as bad as some of you guys. I took my one methadone and I have been itching all evening with some WED. That's what pretty much keeps me from taking more, the itching. I usually don't itch like this with just one. I seem to becoming so sensitive to meds. There is just no way that I can take more of anything. I've had those high doses and it was awful. I was a mess. I'm just afraid that as my arthritis get worse the WED/PLM will too. That's seems to be the pattern. I just wish there was an answer for you EeFall.

Initially, I itched like MAD with methadone - I'd guess the first 2-3 years. At some point, though, it just sort of stopped. But, once in awhile, it's back with a vengeance. Weird.

Does any kind of anti-itch med help you? Zyrtec took the edge off for me - and didn't make my WED worse.

[badnights]

I can't believe we continue to make plans as if I can just continue to work forever, maybe it is human nature...

Gee. I constantly alternate between being appalled at how little I can do anymore, and making plans as I'm still whole. (I know, I'm not supposed to imply that I'm not whole. But that's how it feels.)

I think it's habit of mind. We've spent so many years, such a large portion of our lives and all the formative times, being capable and productive. Then this. How are we supposed to adjust?

And more: when does acceptance become giving up? If you're deathly opposed to giving up, how do you accept? I can't tell the difference.