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

[debbluebird]

Are your WED symptoms getting worse from the hip surgery? It seems to be the case sometime (maybe from the blood loss or meds or stress--who knows why) anyway I'm glad if you aren't having that problem. If you find you are maybe it can be used to help you figure out what aggravates your WED. For instance if you get bad symptoms maybe get your iron and ferritin checked and see if it has changed as a result of the surgery--then you will know what to expect for the next surgery. If you do find it lower and you get something done or it, and it helps at all, then it might give you a direction to look in general too. Make sense--or just sound like a long winded run-on sentence??
Good luck in any case.

First surgery isn't until Friday. Sorry if I wasn't clear. I believe my WED/PLMD is worse because of the increased irritation of the joints. You are right about the iron. I will get it checked.

[rthom]

sorry or the mistake--likely my memory. Hope it goes well for you.

[EeFall]

First surgery isn't until Friday. Sorry if I wasn't clear. I believe my WED/PLMD is worse because of the increased irritation of the joints. You are right about the iron. I will get it checked.

I hope all goes well for you Friday! After my prostate surgery I went something like 6 weeks afterwards without feeling any RLS at all, I was still taking my meds but it was more than that, it was like RLS took a vacation. I think it must have been the strong drugs I was given for the surgery and a few days afterwards but actually I have no idea why. I hope you have a similar experience.

[debbluebird]

Me too !

[EeFall]

The good news is that I slept 11 days in a row, the bad news is I just wrote in the past tense. I went to bed at 10pm last night and realized at 10:40pm that I wasn't going to sleep anytime soon. I got up for 1/2 hour and went back to bed for 5 whole minutes and then I realized it was not just insomnia but full fledged WED. I got up again and went over the day thinking about if I had done anything differently liked chug a glass of aspartame and the answers were all negative, I'm positive (as much as I can be) that I didn't do anything out of the ordinary.

When the realization hit me I was (I just fell asleep for probably 30 seconds according to the string of mostly "d" letters I just woke up to) a little disconcerted to say the least. I took an extra 2.5mg of methadone when I got up the second time. I just took my morning pills a few minutes ago and I have restlessness in both legs. I DON'T UNDERSTAND THIS, but I know it is physically, emotionally, and spiritually draining. Maybe it is a fluke but I have no confidence anymore in much of anything.

Yesterday I did the work of several people in one day and enjoyed doing it. Today I had to call in and tell them I would be using sick leave today because I am not risking getting into an accident, if I hurt someone else I could never forgive myself. It almost seems like an evil game going on and I'm the game piece. Let's see just how much this human can take. The answer is not much more.

[jul2873]

It's important not to panic, EeFall. I'll be going along great and then, out of the blue, have a really lousy night too. I figured out that, for me, when I panic because I don't go to sleep fairly quickly, then it all snowballs on me. I think stress is the killer.

You've been sleeping well; that means the meds are working. On the occasional day that they don't, just give into the disease. Get up, watch a favorite video, if you can. Take a warm bath. Do anything you can think of that will help you relax. I know it's easy to say, and hard to do, but I think it's the reality of our disease. No matter what kind of meds we take, some days are just not going to be good. Do whatever you need to do to ride them out. Look what you've already gone through!

[EeFall]

It's important not to panic, EeFall. I'll be going along great and then, out of the blue, have a really lousy night too. I figured out that, for me, when I panic because I don't go to sleep fairly quickly, then it all snowballs on me. I think stress is the killer.

I am panicking a bit. I suppose it is because I don't have the problem of stress when I go to bed, I never have. My wife has that problem but I have always been able to turn it off when I go to bed. I just think that there is no reason to worry about anything when I am in bed, there is nothing I can do about it then and I actually feel very free in bed like I have no problems at all.

I slept for 11 days in a row between 5 hours and 8 hours a night. As the days went on they became better, not worse. I was genuinely surprised last night when I realized that I couldn't sleep and even more surprised when the RLS symptoms came back. I took my regular dosage this morning, lunch, and evening. At about 7pm I also took another 2.5mg of extra methadone. I am heading for bed in a few minutes and will keep a positive attitude, maybe just a strange occurrence.

It reminded me of times when I accidentally ingest aspartame and it nullifies any and all meds I take, but I just didn't take anything like that. As far as not letting things get to me when I go to bed I guess the lack of sleep is making me fearful and I suppose that could snowball but I will remain calm tonight and see what happens. If I can't sleep I will be taking another 2.5mg of methadone, if that doesn't work then I will try some kratom.

You've been sleeping well; that means the meds are working. On the occasional day that they don't, just give into the disease. Get up, watch a favorite video, if you can. Take a warm bath. Do anything you can think of that will help you relax. I know it's easy to say, and hard to do, but I think it's the reality of our disease. No matter what kind of meds we take, some days are just not going to be good. Do whatever you need to do to ride them out. Look what you've already gone through!

I will try the warm bath, we have a jetted tub which works almost as well as a hot tub. I forget about it though. If that doesn't work I will watch a movie. It is stressful, just the fact of not sleeping, precisely because of it! The whole exercise I have gone through over the past couple of months has been to start getting sleep so I can work! My Doc E is out on vacation until Monday so I can't even contact him. Maybe it is too much to expect that in 11 days I would have the dosage of 10mg of methadone all worked out, maybe it will require more.

Once again I have probably returned to work too early but maybe I need to do this while I am working to see what dosages I need through the day. Yeah I am stressed out - dang it! - my whole future is riding on if I can or can't sleep. Either I will be able to continue my career and live like we are used to living or I will have to retire early which would financially be very bad.

I wish sleeping pills worked on me but Ambien tends to keep me awake I'm typing away right now because I am nervous, it is too much to bare alone. It sounds silly too, I wish it were silly.

[ViewsAskew]

EeFall, I find there are many substances other than sleeping pills that can make someone sleepy. Ambien doesn't do a thing for me, either. Since methadone makes me want to accomplish things and get things done, it's very difficult to fall asleep when taking it. But, a small dose of any of the gabapentin drugs knock me out completely - I just haven't figured out how not to be excessively sleep the following day. I'm not saying they will work for you - and maybe you want to avoid them or you can't take them. Just thinking that maybe there is something out there that will work similarly for you.

[EeFall]

EeFall, I find there are many substances other than sleeping pills that can make someone sleepy. Ambien doesn't do a thing for me, either. Since methadone makes me want to accomplish things and get things done, it's very difficult to fall asleep when taking it. But, a small dose of any of the gabapentin drugs knock me out completely - I just haven't figured out how not to be excessively sleep the following day. I'm not saying they will work for you - and maybe you want to avoid them or you can't take them. Just thinking that maybe there is something out there that will work similarly for you.

Interesting about methadone making you want to accomplish things and get things done. That pretty much describes me without taking methadone, I had never thought about it pushing me further but now that you mention it I have been working incredibly fast and totally self-absorbed this week with one guy mentioning I had hardly said anything to anyone this week and I was also listening to music with buds most of the time to remove outside distractions. In the 4 days I worked this week I probably got the equivalent of several weeks of work accomplished. Maybe it is making me very intense and hyper which would make it difficult to even want to sleep.

Gabapentin, I haven't used it for several years but it really didn't do anything for me. Last night I finally did get to sleep at 12:30 am. I didn't make it to bed until 10:30 pm and stayed in be about 40 minutes and it was just pointless, I couldn't sleep. I got up and took another 2.5 mg methadone (so I took 15 mg of methadone for the day instead of 10 mg) and after another half hour I took 12 g of kratom too. By 12:30 am I was getting sleepy and changed the alarm from 3:30 am to 4:30 am, then finally 5:30 am so I got 5 hours sleep and got off work 2 hour later.

I took my regular night 5mg of methadone at 5:30 pm and about 7:30 pm I took another 2.5 mg or 12.5 mg for the day. I hope it works because I would hate to start taking 15 mg or more a day. At around 15 mg of methadone (or a little more) I know I will get sleep but then it will ruin my work. Too groggy and sleepy and I won't be able to do my job. I am just so sick of this. All I can do is hold on and continue to hope it will work out. I feel like I will either be a zombie with a lot of sleep (barely able to function at work) or no longer able to do my job because I won't be able to drive to work for lack of sleep (also barely able to function if I make it to work). I need a happy median where the meds allow me to sleep and work but it is a difficult thing to do and always, it seems like, changing.

[ViewsAskew]

Gabapentin never resolved my WED - but it sure works great to make me sleep! And, with the glutamate research, that may be a key as to why. Now that you're off of most things, it might be worth trying. I never need much - 100 mg does a great job and I'm out like a light.

The methadone wires MANY of us here. It's not so much like caffeine, rather it's like I'm my normal self and I have no symptoms, I'm not overwhelmed, anxious, or tired - and I'm really to get things done. That's great at noon or even 6 PM, but at midnight, not so much!

[EeFall]

Gabapentin never resolved my WED - but it sure works great to make me sleep! And, with the glutamate research, that may be a key as to why. Now that you're off of most things, it might be worth trying. I never need much - 100 mg does a great job and I'm out like a light.

The methadone wires MANY of us here. It's not so much like caffeine, rather it's like I'm my normal self and I have no symptoms, I'm not overwhelmed, anxious, or tired - and I'm really to get things done. That's great at noon or even 6 PM, but at midnight, not so much!

I fell asleep on couch, my wife just woke me and I'm off to bed while I can make it. Interesting. I will have to dream about this one. I don't think I have ever existed on only methadone, probably why I never noticed this before.

[EeFall]

Alas, it is past 2:30 am and I have had no sleep once again. The itching alone could be keeping me up. Methadone makes me itch! I think it is one of the main reactions to opioids but my itching is intense. After laying in bed for 45 minutes of unsuccessful sleep I took a couple of Ibuprofens and an Aleve hoping they would relieve the itching but they didn't do the job at all.

I think it may be beyond the standard itching from opioids though. I mean when I was off my meds for 10 days my feet and hands healed up, my scalp healed up, my nose healed, and even my ear problems went away. Some may have been caused by Lyrica or pramipexole because my nose is still okay at least. I think I must be allergic to methadone It would be hilarious if it were not so pathetic.

I had even taken the new dose of 7.5mg of methadone at 5:30 pm or 12.5mg a day. I wrote Dr E only today that I was going to start taking that amount because 10mg was not working. I have fallen asleep twice writing this but RLS woke me very quickly, within seconds each time. It is too late to take more methadone tonight but tonight I will take 10mg or 15mg for the day.

I imagine it will work, I freaked out the other day when I could not sleep and did not go to work and took 15mg that night and it did work and was able to work Friday. The trouble is that at around 15mg I am about too drugged up to drive or work. It is at least at the border, 17.5mg and I doubt I could drive or work. Sort of a catch 22 if I take enough to fix me up I will be able to sleep but not to make a living. I just fell asleep another 3 times and woke immediately.

On another thread ViewsAskew mentioned taking gabapentin along with methadone. I wrote the doc about the possibility of using it. Besides that I am out of ideas. I have 1 day sick leave and a few days vacation and then it will be over, I will have no other choice but to retire at 58. To make it we will have to go bankrupt, I'm pretty sure about that, just too many bills because I figured I would be working for many more years, I didn't actually think it would come to this. We might be able to keep the house though and my wife could continue to work, at least for awhile.

I doubt that taking large amounts of methadone will even work since it seems like I am allergic to it but I don't know anything else that works anymore. My wife is in denial, she thinks I can just continue working, she doesn't want to think about it. I don't want to think about it either but I'm out of options. I can't just keep missing work. When the few days remaining of sick leave and vacation are used up then I can have 2 times of missing work unexcused and I will get 2 corrective action memos and the third time is termination.

I don't want to go out the door by being fired, I would rather just retire. To me it is like the difference from an honorable or dishonorable discharge from the service. The people at work aren't treating me the same since I went out on the last 5 weeks leave anyway, it is like they think I'm faking it. That is the worse part of this disease, that no one really believes I'm sick and to think of the hell I have been going through, and it looks like it will never end.

[cornelia]

It is so sad, but I agree that retiring is very likely the best option for you, medically speaking. I can imagine the immense (financial, emotional) problems you will have to deal with, but once you get there you will notice that the enormous stresses you have to deal with every single day wondering if you can go to work will not be there anymore. I found that the best thing when I had quit work. But yes, very difficult to make the decision.

Unless you can work from home it is in my view almost impossible to work with very severe RLS. I wonder what dr E will say about this.

Corrie

[EeFall]

It is so sad, but I agree that retiring is very likely the best option for you, medically speaking. I can imagine the immense (financial, emotional) problems you will have to deal with, but once you get there you will notice that the enormous stresses you have to deal with every single day wondering if you can go to work will not be there anymore. I found that the best thing when I had quit work. But yes, very difficult to make the decision.

Unless you can work from home it is in my view almost impossible to work with very severe RLS. I wonder what dr E will say about this.

Corrie

There are things that I probably can do at home to make money, I just need to do them. I suppose if I were without the stress of going to work in the early morning that I could sleep later. I know that my RLS is the least at 4am just about the time I get up now. I would probably stay up until 3am and sleep for 3 or 4 hours so from maybe 3 to 7am which would be enough sleep for me. Then I could spend my time doing things to make money on the Internet and become the chief bottle washer, handyman, and gardener around the house.

So you quit work? Did you retire with a pension? How did it work out for you?

[Polar Bear]

Eefall... I've told my story on retirement on previous threads. But just to confirm your thoughts on retirement and also my agreement with cornelia.
The economic decline forced my employer to drastically reduce staff levels. I was made redundant, I did not wish to be redundant. I was 3 weeks short of my 60th birthday and thus my government pension which I had paid into all of my working life. I had no private pension and had never wanted to retire fully.
There was a couple of days of tears and feeling inadequate. I worked my 13 weeks notice, got my redundancy payment which was 12 weeks' salary and used it to replace my 9 year old car with a 3 year old.
The stress of the alarm clock has gone. This makes such a big positive difference to my emotional state. I have less money but I will not starve.

(Forgive my repetition of this)