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

[debbluebird]

I stopped Lyrica because it made me suicidal. It just wasn't worth it to me. It was a horrible feeling. But I don't have a solution for you. That was when I found Methadone. I agree with Ann. Or maybe cut back on the Lyrica and add the Trazedone. It's worth a try. I'm taking 15 mg of Methadone, spaced around the clock, every 8 hours.

[Rustsmith]

I really hope that my comments find you in less dark mood that what is conveyed in your last posting. I also hope that some of it was influenced by watching the Twilight Zone episode you mentioned. That was a unbelievably great series, but was probably not the best thing to watch when depressed or feeling bad. Dark, weird and twisted are great, but only in the right conditions.

First, I wanted to say that all the problems that you have been going through have not been without benefit to others. Since I am new to WED treatments, I made a point of reading every note in this thread from the beginning. After reading your day-to-day reports, I feel I got at least a slight idea of what you were going through. As a result, I have resolved that there is no way that I am going to let any doctor get me into that position, even if it means having to tell the doctors to take a hike and go back to my non-pharmaceutical coping mechanisms and rampant insomnia. I suspect that there have, or will be, others who will read of your saga and also benefit from your experience.

Since you mentioned that you are also an engineer, my suggestion is to approach these current problems as if they were an engineering project at work. You already know that you need to take control of the project as the project manager and your last note indicates that you also know of that at least two tasks. Which are to advise both your doctor and, more importantly, your wife that this has gone from being just a complex WED case to one that impacts your mental well being (and possibly your future) and opens up the "mean" side of your personality, which upsets you. There are probably other project tasks that you could think of that need to be taken, if you approach it logically and step-by-step, like you would any project. If nothing else, the thought exercise could provide you with a mental distraction for a few hours, which would temporarily help both the WED and the depression. You might need to force yourself to do this at first to override the depression, but it would be very beneficial and could provide a distration later in the week as you review and new tasks that you conceive to add to the project.

Finally, I'd like to add something about how WED impacts the life of our loved one. For 40 years I have been in a caretaker position much like that of your wife. My wife has MS and I cannot truly understand the chronic pain that she has to endure even though I have WED. Her issues are far worse than mine. Even worse for her, she is also an engineer but had to give up working just as she was making the transition from junior engineer to a journeyman type role where she was responsible for her own work. Having to give up her profession after having to fight through school and the hassles faced by any junior engineer had to have been even more difficult that what I was able to comprehend even though I lived every day with her at the time. Through all of this, I have done everything that I can to provide support, take care of her, tried to keep her active without overextending her remaining physical strength and tried to keep her spirits up. She occasionally asks why I stayed since most MS marriages end shortly after diagnosis, but without her, my life would have been empty. I suspect that your wife would feel much the same way (most of the time ). So, make talking to her about where you are right now a top priority. She has every right to know and could possibly understand more than you think. After all, she experienced first hand what you went through this summer.

Steve

[Polar Bear]

I feel that every post means something to someone.
We learn from each other.

Eefall, we all care, let us know how you are.

[badnights]

Pay attention to your mood, and ask your wife for an objective/outsider's viewpoint. Like deb, I got suicidal on an anti-convulsant - for me, it was gabapentin.

I have been prone to depressed moods all my life, but by the time I was 16 I had figured out that they would end, no matter what I did or didn't do; they would come and go as they pleased, but I could reassure myself that life was worth living by reminding myself that it would end.

I knew the gabapentin was messing me up seriously - I could FEEL it - but I really knew when I lost the knowledge that my depression would end, when I couldn't imagine what benefit there might be to continuing to live, not even the thought of my children knowing their mother had offed herself had any impact on me at all. Only the depth of my apathy prevented me from ending it. And THAT was the gabapentin.

Life sucks sometimes, but if it sucks that bad, something is messed and needs fixing, so that hope can re-establish itself where it belongs, in your heart. So pay attention. If you need to stop the Lyrica, perhaps the methadone can be increased. Perhaps two opioids. Perhaps a different anti-convulsant. De E will have ideas.

[debbluebird]

I was also thinking, maybe two opioids. When I'm on two, they totally take away the WED/PLM.

[EeFall]

I increased the methadone and Lyrica and the sleep seems better. I really don't believe I am depressed. It is just that I am not getting restful sleep much of the time. Just because I sleep 6 hours does not mean it is 6 hours of good sleep. All of my sleep is fake, brought on by drugs alone. I am lucky that I am able to sleep at all.

I don't know how to make it anymore clear, my sleep is not real. Normal sleep, whatever that is, I do not have anymore at all. There is something within us which is sleep, it restores our minds and I know it for a fact because I don't have it anymore. I have synthetic sleep, it is not real. It keeps me barely going, enough to work still, at least for awhile but I think that whatever I have is becoming worse and it has continued to progress until this point.

I am not depressed. At one time I was clinically depressed, but this is not it, really. I am okay, it is just that it continues to mess with me.

[ViewsAskew]

I increased the methadone and Lyrica and the sleep seems better. I really don't believe I am depressed. It is just that I am not getting restful sleep much of the time. Just because I sleep 6 hours does not mean it is 6 hours of good sleep. All of my sleep is fake, brought on by drugs alone. I am lucky that I am able to sleep at all.

I don't know how to make it anymore clear, my sleep is not real. Normal sleep, whatever that is, I do not have anymore at all. There is something within us which is sleep, it restores our minds and I know it for a fact because I don't have it anymore. I have synthetic sleep, it is not real. It keeps me barely going, enough to work still, at least for awhile but I think that whatever I have is becoming worse and it has continued to progress until this point.

I am not depressed. At one time I was clinically depressed, but this is not it, really. I am okay, it is just that it continues to mess with me.

I felt that way, absolutely, on the gaba drugs. It was drugged sleep and I never felt right. But, for me, that isn't so with opioids. If I use them alone, I sleep - real sleep. But, I seem to want/need at LEAST 9 hours to be somewhat functional and 12 to feel good. While that sounds great, it never works. First, I'm alert when I should be sleeping. Also, I am awake for about 16 hours and with 12 hours sleep, that's a 28 hour day....doesn't compute. I'm continually staying up way past a reasonable bedtime. At least ten times in the last year I've kept a 26-28 hour day for a week or so, until I'm back to going to bed at 10 PM. It lasts about 1 night.

So, I hear you and agree - drugged sleep isn't the same - it throws us off in one way or another. Either we don't get the right kind, don't get enough, get too much, are wired at the wrong times, are sleepy when we should be awake....and so on.

That alone make work a nightmare! But, I keep telling myself I'm grateful because the sensations are under control at least 90 percent of the time. Quite a trade off, huh?

Glad to hear you don't feel it's depression, though. I have to say that for me, constantly dealing with these other issues is exceedingly wearing - and at times depressing. I usually bounce back after a downswing, but they come all too often.

[debbluebird]

I understand what you are saying. Even though I have been sleeping 9 and 10 hours, I still feel tired during the day. Regarding the Lyrica, I wasn't depressed either, just suicidal. I know that doesn't make any sense, but when I stopped the drug, the feeling went away. Plus, when you aren't getting restorative sleep, that causes a lot of issues. I hope it changes for you soon.

[EeFall]

Thanks guys for your comments. Even though I took the extra doses went to bed about 11 pm and slept for 20 minutes, woke up and my wife was fast asleep. I laid there for 10 minutes and then got up until my wife woke about 1:30 am and came and got me to go to bed. I slept from about 2 am to 5 am. The day at work wasn't too bad despite the quantity of sleep.

I took the extra Lyrica and methadone again tonight. Also I took it at 5 pm instead of 5:30. Yesterday I took it at 4:30 because I started getting RLS symptoms! It almost seems like I am augmenting but as far as I know that is impossible because I am only taking those 2 meds. I am worn out trying to figure out what is going on anymore, it is just this stupid disease, it is always changing.

I read a blurb today on the Internet that they did a study in Europe on aspartame and they found that it has absolutely no side effects and is really safe for everyone. I almost burst out laughing while I read it on my lunch break on google news. Aspartame is the number one ingredient I can take that will instantly nullify any meds I have taken for WED. It is almost funny how stupid some of these studies are, it just boggles my mind.

[EeFall]

I think it is becoming increasingly clear with every night of sleep now that even though I am sleeping, 6 hours last night, and 8 hours 3 nights ago, that the sleep is probably not deep sleep and/or REM sleep. For awhile I tracked it with the contraption that I would wear at night, but it quit working. It would read the brain waves. I am pretty sure they would show that I am now mostly having light sleep, not REM nor deep sleep. Deep sleep is the most important followed by REM sleep.

I am so tired it is incredible that I have been able to work the entire day. Right now I am extremely tired and it is only about 6:45 pm. I have felt the same way for several days. I just think that having medications give me all of my sleep is just not working. The only thing the methadone and Lyrica is really good at, and thank God, is that I am not experiencing RLS symptoms. As in I am not moving about, I am able to sit down, and I don't have to pace endlessly. I guess that is a big something but without restful sleep I don't know how I can expect to continue to go on living a "normal" life, I just don't think it will work.

I am out of ideas and I am pretty dang sure the doctors won't be able to help me out of this.

[cornelia]

I'm so sorry Eefall but I always think that with (very) severe RLS a normal life is not possible at all; full stop. That's one of the reasons this disease is so awful. It often robs you from having social contacts and some of us can't keep their jobs anymore. We can try to make our life as comfortable as we are able to, juggle with meds etc. but in the end we have to give in to RLS. I wish I could be more positive but that is what it is IMO. Until they find better meds we will have to accept this, and that is a pretty difficult task. I.m not very good at that.

Corrie

[debbluebird]

I was wondering, when was the last time you had a sleep study? I might be totally off base, because I really don't know what I'm talking about. I was wondering, since you feel your sleep maybe has changed. Or maybe it hasn't. I don't know. I was thinking about this regarding myself because it's been five years since I had it done. I was wondering, if my sleep has changed.
Just a thought.

[ViewsAskew]

I was wondering, when was the last time you had a sleep study? I might be totally off base, because I really don't know what I'm talking about. I was wondering, since you feel your sleep maybe has changed. Or maybe it hasn't. I don't know. I was thinking about this regarding myself because it's been five years since I had it done. I was wondering, if my sleep has changed.
Just a thought.

Drugs affect sleep - makes total sense in this situation to have a sleep study WITH the new drugs to see what's happening.

[EeFall]

I'm so sorry Eefall but I always think that with (very) severe RLS a normal life is not possible at all; full stop. That's one of the reasons this disease is so awful. It often robs you from having social contacts and some of us can't keep their jobs anymore. We can try to make our life as comfortable as we are able to, juggle with meds etc. but in the end we have to give in to RLS. I wish I could be more positive but that is what it is IMO. Until they find better meds we will have to accept this, and that is a pretty difficult task. I.m not very good at that.

Corrie

Last night I slept about 7 hours. I felt today about as well as I can be and was able to go to work after going in an hour late. I turned off the alarm and just got up when I woke. It is now about 11 pm Wednesday. I'm going to bed in a few minutes at the insistence of my wife, not because I want to go. I am exhausted but it is not from lack of sleep, I'm pretty sure, it is from lack of restful sleep. I just have to figure out how to keep going because no one other than me is going to pay the bills.

It is just so difficult. Not only is the sleep fake, the wanting to sleep is fake too. It wanes and I could just sit here the rest of the night, probably dose off once in awhile, but it is not like there seems a need to go to bed. I just am so freaking sad. I have been trying everything and nothing seems to work. I feel like a robot when I go to bed. I probably look like one too, being hooked up to that VPAP machine! I guess I have reached another new normal - it is surprising what the human mind and body can endure, if I didn't know better I would say there are God's up in Mt Olympus fooling with us like pawns.

I hope they are getting a kick out of watching me fail. Probably like one of those fail videos on YouTube, I bet I make a lot of folks laugh. Wow look at that pathetic moron taking more of this crap, now he can't even get restful sleep and has lost all hope, the faithless bastardd. I gotta go get my 40 winks , I'll read the rest of these posts and call it a day.

[EeFall]

I was wondering, when was the last time you had a sleep study? I might be totally off base, because I really don't know what I'm talking about. I was wondering, since you feel your sleep maybe has changed. Or maybe it hasn't. I don't know. I was thinking about this regarding myself because it's been five years since I had it done. I was wondering, if my sleep has changed.
Just a thought.

I had one about a year ago. It turned up nothing new, only that I have severe RLS, severe obstructive sleep apnea, and central apnea (it is not that bad although they did get me a VPAP). Sleep is a mysterious and complicated thing that involves the human brain, it is beyond anyone yet. Medications, and I take many besides Lyrica and methadone, who knows what they do to our sleep. Just because the drugs allow me to appear to be asleep to an outside observer, it doesn't mean that it is good sleep. I even fall asleep and it seems to me that I am sleeping but the results do not match.

There has to be something much more complicated going on that perhaps the drugs prevent happening. You can turn a computer on at the flick of a button, but unless it reboots you get a blue screen (as the jargon goes), it means the computer is on but not booted up. Anyway, I should go attempt sleep.