Dependency? Be Afraid, Very Afraid

[EeFall]

I arrived on this crazy train, this point of my life, because I have severe Sleep Apnea & severe RLS. If you have it yourself then you know what I am talking about, I'm sick, I've been on a roller coaster of life and death, there is no better way that I can say it. I don't care what anyone else says but there is always 2 choices that I have to contend with with this horrible Willis-Ekbom Disease. When the meds stop working (and they ALWAYS eventually stop working) you can drive yourself mad without sleep and yet live with the constant corruption of your sleep that affects every aspect of your life. It is pretty bad when I can't even urinate like a normal man because the restlessness is so bad that I cannot stand there long enough to go. Just one of the many examples of how my life is not enjoyable.

There are so many things in my life that I can do, but won't because of WED. It is like a cancer that has destroyed everything about me that I enjoyed doing. Now as most of you may have read I spent 17 days coming off my 3 WED medications and then 10 days of not taking ANY medications for WED. The second choice is death by the way, life or death. Is it worth living with severe WED where one goes months without sleep? Before going through the detox I would think about it everyday - Is it worth living? This detox may have put me over the edge. I'm no different than someone like Kurt Cobain who was addicted to Heroin. He had just gotten out of rehab and probably realized how impossible it was to get back to normal.

I pretty much felt like I have been living in hell on Earth the last 13 years but after going through another month of mostly sleepless nights added with severe withdrawals including losing myself. Losing yourself? If you have ever seen the movie, The Shining, whoever came up with it (Stephen King) unfortunately clearly shows the kinds of things I have gone through in the last month. I'm talking about not only being in reality hell, but unreality hell on Earth which is much worse. Dependence/addiction are the same name for a horrible condition that I have with at least 3 meds, it is not gone, it is not cured, it is just sitting there. It is like the devil saying to me not only will I make your life a living hell I will send you to a place in a waking state that is like a dream that you cannot escape, and there is no limit to the horrors that await you. I have gone over to the other side and seen this and it terrifies me.

Now the doctor (well intentioned I'm sure) has me taking 1/2 tab of methadone 2.5 mg a day for a week. Do you know what that would do if I followed that? It would be another 7 days of no sleep. I have to protect myself, especially now as I stand at the edge. Even my wife understands how difficult it would be for me to have gone through what I have gone through the last month and then be expected to continue with no sleep for another week, two, or 3 weeks? I'm doing little better at trying to resolve this. I got zero hours of sleep last night. I took 1/2 tab twice yesterday and a 1/4 tab too, not to mention a little kratom to give me a little euphoria (I need to feel like life is enjoyable). Night before I took 1/2 tab twice a day. Before that I followed the doctors 1/2 tab for 1 or 2 days. Today I guess I will try three 1/2 tabs of methadone. If I was doing what doc wants I wouldn't be where I am now for 3 more weeks. I won't last that long.

And oh yeah since starting methadone my hair is itching again and my skin around my nails is cracking again. I suppose the other side effects will occur to, it was the freaking methadone all along. Even arthritis in my hands seems to be getting much worse since introducing methadone again! I can write doc and tell him this stuff but hey it is Saturday and he won't see it until probably Monday or Tuesday. Lyrica doesn't work. Mirapex is out of the question. Kratom won't keep the withdrawals down 100%, and I am going through withdrawals still, maybe for another few months!

In other words I can't get enough of the methadone in my system to sleep yet! I am racing against an invisible wall and I keep screaming that I'm going to die if I don't have a few decent nights of sleep. I could take a bunch of it but it would defeat the purpose of going through the withdrawals, to take a smaller amount, the least of methadone, so I can function in society, make a living, and live the American dream.

Yeah so, it may have been a bad decision to do the withdrawal thing but all 3 doctors said I was at the end of the line. They said this openly to me I believe because they knew the hell I would go through would seriously impact my state of mind. On top of this I found out today a friend of mine took his life the other day, he had been struggling with an addiction for several years. I guess he tried everything.

I need to quickly get the dose up so that I can get some sleep, yet not so quickly that I end up taking more than is needed. This whole WED thing has been like this, it is pretty hard to deal with when the doctors' themselves don't know exactly what it is, and thus how to treat it. I'm trying, I really am, maybe tonight I will finally get some sleep

[debbluebird]

What can I say ? I agree with you completely. I've had similar thoughts.

[EeFall]

What can I say ? I agree with you completely. I've had similar thoughts.

I actually fell asleep in my recliner for probably a half hour which is very encouraging since most of today I have not even been able to sit down. I took an extra 1/4 tab a few hour earlier when I realized how bad it was. I also had not realized that I had slept 2 hours in last 4 days again, sneaks up on you.

[EeFall]

Victory! Yesterday was purely experimental in when to take the methadone and I kept to the 1/2 tab (2.5 mg) size, but I got it to work! I took 1/2 tab in early morning, at lunchtime, and at 5pm & 6:30pm and it worked well enough during day to keep symptoms under control and I slept roughly 5 hours. Problem being I woke up for last time at 1am & realized by 2am that I needed another 1/2 tab of methadone because I was experiencing restlessness.

Today I will try to hone this to 2am (I will get it to 3:30am by the time I return to work) and then at noon the same dose, and at 6pm I will take a whole 5mg tab of methadone. So 10mg for the entire day of methadone is all I now need to control WED! This is exactly what the doctor was hoping for because prior to detoxing I was taking 12.5mg of methadone a day plus 200 mg of Lyrica a day plus .25 mg of pramipexole a day.

Now I am able to take one medication a day and a little less of it than before detoxing. I will of course try this for several days and see how it works. If you think about it this is really awesome when one realizes that it is controlling not only my WED but also the withdrawals that continue for pramipexole and Lyrica! It is possible within 3 months or so that I would be able to take less of the methadone once my body stops going through withdrawals.

I don't know why things turn out like this but it seems once I have announced I am throwing in the towel, that I can't take it anymore, then a solution is found. Kudos to Dr E and some serious genuflecting are in order. My Seattle sleep doctor who referred me to Dr E is going to be getting a letter from me thanking him for doing that. He wasn't afraid to admit that he didn't know everything, he just wanted the best for me.

I need to write Dr E a note within the next few days though stating that I went faster than I was told to go as far as increasing the dose until it worked. I wouldn't doubt if he is ticked off but then doesn't everyone have a limit as to how much one can endure? I for sure know I have a limit now and was about to knock at the door. If anyone gets anything out of this thread and my last one about getting off these medications I hope it is that the emotional/mental state of the individual attempting to do this is extremely important.

[debbluebird]

So glad to hear of your success. You should start to feel better as you sleep more.

[jul2873]

EeFall, you remind me of General Patton's comment that "Courage is fear holding on a minute longer." I'm glad you're holding on. Of course you will still have bad days as well as good days, but keep holding on that minute longer.

[EeFall]

So glad to hear of your success. You should start to feel better as you sleep more.

Thanks! I am a little drowsy today but nothing I can't handle (slept another 2 hours or so on couch this morning lol). I am wondering if I may be taking a tad too much so I'm going to have to watch it closely. I can't imagine methadone stopping, maybe tolerance buildup would make me take more eventually, but I think this might work for years to come. I am feeling very optimistic for a change, this truly is a game changer & will allow me to continue working. I just hope I have it all under control by next Monday when I return to work.

[EeFall]

EeFall, you remind me of General Patton's comment that "Courage is fear holding on a minute longer." I'm glad you're holding on. Of course you will still have bad days as well as good days, but keep holding on that minute longer.

I will remember to do that, to hold on a minute longer. When I first decided to go through this I looked at it from the point of view that I can do it while I was feeling good at the time and the medications had been working for 6 weeks in a row. As the weeks go by and there is little sleep (or none) it would wear me down. I am not sure what the definition of torture is but I would say it is a constant state of living in such an uncomfortable way as to stop enjoying anything. I think it is important to also hold onto the good times, to remember how it was and how it can become once again. The changes WED patients seem to generally have in their medications working or not just is a terrible situation to be in but we have to hold onto the days when everything works and know that there will be good times again.

[debbluebird]

I've read some of your posts today. You sound like you are feeling a little better. It's been three weeks since I stopped Mirapex and I am finding that one day/night is good/ok and the next day can be awful/bad. With that said, since I am having some good days I'm not feeling discouraged. For the moment I am able to live this way. I also believe that after I get my hips replaced and that irritation goes away it will reduce my WED/PLMD. I am looking forward to that and being able to get around, but not the surgeries. Sort of contradictory.
It's going to get better for you I'm sure.

[EeFall]

I've read some of your posts today. You sound like you are feeling a little better. It's been three weeks since I stopped Mirapex and I am finding that one day/night is good/ok and the next day can be awful/bad. With that said, since I am having some good days I'm not feeling discouraged. For the moment I am able to live this way. I also believe that after I get my hips replaced and that irritation goes away it will reduce my WED/PLMD. I am looking forward to that and being able to get around, but not the surgeries. Sort of contradictory.
It's going to get better for you I'm sure.

Thanks. I was thinking it might be the withdrawals too. The doctor said they are usually over within 3 months but can go as long as 6 months. With the added augmentation thing with Mirapex it probably is just that more complicated. Then there is the Lyrica, I tried to stop it cold turkey one time and in about 3 days I was in some serious withdrawals and realized there was no way I could do it cold turkey.

It irritates me to think the doses of methadone I am taking now probably have very little to do with how much it takes to dull my WED symptoms. It has more to do with dulling the withdrawal symptoms which are much more powerful. If I didn't have withdrawals I would probably be taking 5 mg a day of methadone instead of 10 mg. Actually today I am only doing 7.5 mg. Hope it works.

[debbluebird]

I think you are doing fine with the Methadone, especially with spacing it all out. Yes, you just can't cold turkey Lyrica or Gabapentin.

[dogeyed]

EeFALL, I have a couple great suggestions for you, take it or leave it, just another experiment. I like the idea of trying 7.5 methadone. So, let us say before work whenever you take that one, just take 1/4 (2.5 mg), skip lunch, and then at dinner take 1/4 (2.5 mg) and you get a 5 mg number OR at dinner 1/2 (5 mg) and you get your 7.5 number... you may have diff ideas, but since you seem to like taking extra in evening to keep you asleep, I figured evening is the highest dose, even if you need more.

But here is another idea just to try. If the 5 or 7.5 just isn't quite working, and you keep wanting to go to 7.5 or 10 mg, then ask the doc to give you Lyrica at a MUCH LOWER DOSE. I'm up to 100 mg x3, and it's waaaay too much. I only take two or three a day BECAUSE it makes me so sleepy. It really helps my overall pain from a back injury, but I also take other stuff for my back that is satisfactory... Lyrica helps SOME types of back pain, and it was the only thing moderate that worked for my tailbone.

Restless legs is different. It is ab unrelenting, VERY ANNOYING and quite painful experience, it really will ruin your life. I read about a poor wife who wrote to THIS FORUM years ago, and wanted to know more info about RLS becuz her husband went around the bend and wound up in the nuthouse temporarily. In my opinion, he didn't get enough of the right medicine. This is your situation, and ON TOP OF THAT you wound up with some addiction problems, as well as difficulty with sleep apnea, and you did (or still do?) take Kratom which, in case you didn't know, it has stimulant properties. So, just as an aside, DO NOT take that stuff after lunch, otherwise might affect your sleep.

Now, the second suggestion I have revolves around the Lyrica. Let us say you take 1/4 before work, still skip lunch, then no more Kratom if you're still taking it, and 1/4 at dinner = 5 mg, AND take 50 mg Lyrica at dinner also. That stuff SHOULD keep you in the bed until you would normally like to get up. You'll be out like a light for four hours, then quite groggy for several more hours, and with the little bit of methadone in you, that ought to do it.

Proably some impossibilities in there, proably 1/4 is really just NOT gonna be enuff and you'll wind up pushing everything up too much, etc. You really shouldn't have to take more than one drug for RLS, and frankly my fav idea is yours, to try to keep it at 7.5 for as long as you possibly can, a year or two. Also, to help your RLS since you might skip lunch, if possible, get in that bathroom and rinse your face off really good to cool it, and go in the stall and put a couple cold packs (you know, that you can also heat up in the microwave) on your calves for as long as you can stand being in that stall 3-5 mins is all. It's just it will help you out as you make that last number of hours before quitting time. Also, if there's any way to keep your feet up, even if it takes a little box at your desk where your feet go, pull that on under your feet, and take a couple aspirin and something to eat or drink with it so you don't get an upset tummy. Just give it a shot for one work week, and see how you do. You may not do as well at home on weekends, so go ahead and take the 1/4 at lunch. So, your prescription has got to be large enough to include the extra 1/4, or 7.5 mg daily or if you find 7.5 in general isn't working and the 10 is perfect, well, there you go.

Keep us all posted about your situation. There are a number of methadone users on this forum, so go to the pharmaceutical department and see can you learn a few things from how those folks are doing with theirs. AND this is probably the most important thing, but since you have sleep apnea, I have to assume a doctor has given you a see-thru light plastic nose and mouth "mask" with a light elastic band for your head, and you turn on this air machine to keep a positive pressure going down into your throat so you won't choke up and stop breathing at any point during your sleeping period. Also, on weekends, sleep as much as you want whenever you can catch a catnap. I am big on naps, as is my father and my brother, and all of us sleep very well at night, like logs, all the way to the moment we must get up. gg

[EeFall]

EeFALL, I have a couple great suggestions for you, take it or leave it, just another experiment. I like the idea of trying 7.5 methadone. So, let us say before work whenever you take that one, just take 1/4 (2.5 mg), skip lunch, and then at dinner take 1/4 (2.5 mg) and you get a 5 mg number OR at dinner 1/2 (5 mg) and you get your 7.5 number... you may have diff ideas, but since you seem to like taking extra in evening to keep you asleep, I figured evening is the highest dose, even if you need more.

But here is another idea just to try. If the 5 or 7.5 just isn't quite working, and you keep wanting to go to 7.5 or 10 mg, then ask the doc to give you Lyrica at a MUCH LOWER DOSE. I'm up to 100 mg x3, and it's waaaay too much. I only take two or three a day BECAUSE it makes me so sleepy. It really helps my overall pain from a back injury, but I also take other stuff for my back that is satisfactory... Lyrica helps SOME types of back pain, and it was the only thing moderate that worked for my tailbone.

Restless legs is different. It is ab unrelenting, VERY ANNOYING and quite painful experience, it really will ruin your life. I read about a poor wife who wrote to THIS FORUM years ago, and wanted to know more info about RLS becuz her husband went around the bend and wound up in the nuthouse temporarily. In my opinion, he didn't get enough of the right medicine. This is your situation, and ON TOP OF THAT you wound up with some addiction problems, as well as difficulty with sleep apnea, and you did (or still do?) take Kratom which, in case you didn't know, it has stimulant properties. So, just as an aside, DO NOT take that stuff after lunch, otherwise might affect your sleep.

Now, the second suggestion I have revolves around the Lyrica. Let us say you take 1/4 before work, still skip lunch, then no more Kratom if you're still taking it, and 1/4 at dinner = 5 mg, AND take 50 mg Lyrica at dinner also. That stuff SHOULD keep you in the bed until you would normally like to get up. You'll be out like a light for four hours, then quite groggy for several more hours, and with the little bit of methadone in you, that ought to do it.

Proably some impossibilities in there, proably 1/4 is really just NOT gonna be enuff and you'll wind up pushing everything up too much, etc. You really shouldn't have to take more than one drug for RLS, and frankly my fav idea is yours, to try to keep it at 7.5 for as long as you possibly can, a year or two. Also, to help your RLS since you might skip lunch, if possible, get in that bathroom and rinse your face off really good to cool it, and go in the stall and put a couple cold packs (you know, that you can also heat up in the microwave) on your calves for as long as you can stand being in that stall 3-5 mins is all. It's just it will help you out as you make that last number of hours before quitting time. Also, if there's any way to keep your feet up, even if it takes a little box at your desk where your feet go, pull that on under your feet, and take a couple aspirin and something to eat or drink with it so you don't get an upset tummy. Just give it a shot for one work week, and see how you do. You may not do as well at home on weekends, so go ahead and take the 1/4 at lunch. So, your prescription has got to be large enough to include the extra 1/4, or 7.5 mg daily or if you find 7.5 in general isn't working and the 10 is perfect, well, there you go.

Keep us all posted about your situation. There are a number of methadone users on this forum, so go to the pharmaceutical department and see can you learn a few things from how those folks are doing with theirs. AND this is probably the most important thing, but since you have sleep apnea, I have to assume a doctor has given you a see-thru light plastic nose and mouth "mask" with a light elastic band for your head, and you turn on this air machine to keep a positive pressure going down into your throat so you won't choke up and stop breathing at any point during your sleeping period. Also, on weekends, sleep as much as you want whenever you can catch a catnap. I am big on naps, as is my father and my brother, and all of us sleep very well at night, like logs, all the way to the moment we must get up. gg

Thank you for you informative letter. I'm impressed that you have been a member since 2004. Since 2000 I have searched the Internet for a place like this and was never able to find this site until last year. Unfortunately the 7.5 mg methadone did not really work. It may work for the sleep at the bare minimum but I have RLS symptoms most of the day then that is not what I would call living the normal life One of the things my doctor wanted me to find out was what I could actually live with and I don't want to have any symptoms of WED at all if I can help it. After going on almost 14 years of this it is just miserable to constantly have to move around or walk around and is almost as aggravating as the sleep lose.

I am trying 2.5 mg methadone at 4 am & 11am and then 5 mg at 5:30 pm hoping I will get to bed by 8:30 pm. Even at this 10mg I still feel the RLS symptoms some during the day but so far it has not been terrible. Your suggestion of Lyrica is a good one but the withdrawals were so horrendous that if I have my way I will never take anything ever again except methadone. Methadone is probably even worse but at least it controls my WED and allows me to sleep, I can live with it I never want to have to be dependent on more than one drug ever again.

The kratom is another one I have had problems with and so I am not taking it now but will use it in the event that, for whatever reason, my prescription for methadone is not going to be filled. Kratom is a depressant and a stimulant at the same time plus it has a euphoric effect that makes it unique. The stimulant effect is usually, at least for me, more pronounced under 5 gram dosage while at larger doses 12 grams plus it all but disappears. It depends on the strain too but generally I stick with strains that make me sleepy. I think it possible that the euphoria effect, makes you feel good, might be what allows sleep to occur. I'm staying away from it though because as I said I'm only going to be dependent on one med at a time, and kratom one can become dependent on.

My VPAP machine I use nasal pillows. I have VPAP machine now because methadone has turned my regular sleep apnea into also central apnea where the brain forgets to breathe. Last night I woke up to find twice that my mask was off and hung up! I never go to bed without it on and yet it was hung up nicely during the night twice. This is ominous news it means that my subconscious is starting to do things that I would not do. Over these weeks of getting off the meds things like this have increased which include sleepwalking, sleep-driving, and acting out dream states physically. Now I am taking my mask off at night without my conscious knowledge! When I was first diagnosed with sleep apnea, RLS, and PLMD I was not able to wear a mask because I would take it off at night without knowing it. That was in the year 2000. I have no idea what is going on but with central apnea too not wearing a mask, especially taking something like methadone, could be a death sentence. I might have to rig something up so that it is not so easy to take the mask off at night.

[jul2873]

Just a note about Kratom. I imagine it affects people in different ways. I've found that no matter what strain I take, a small amount helps me sleep. It doesn't make me feel sleepy, but it stops the hyper alert sensation, and then I just go to sleep because I'm tired. What seems to work best for me is taking one gram every two hours (starting abut 5:30 p.m.) until bedtime, and then another gram when I wake up in the night. I've been getting a very good night's sleep doing that. Of course, with this lousy disease, all that could change tomorrow.

And I'm certainly not suggesting you start taking it again, EeFall. You know what will work best for you. I just didn't want people to be afraid to try it, worried it might keep them awake. Since we are all different, it might, but it is what allows me to sleep.

[EeFall]

Just a note about Kratom. I imagine it affects people in different ways. I've found that no matter what strain I take, a small amount helps me sleep. It doesn't make me feel sleepy, but it stops the hyper alert sensation, and then I just go to sleep because I'm tired. What seems to work best for me is taking one gram every two hours (starting abut 5:30 p.m.) until bedtime, and then another gram when I wake up in the night. I've been getting a very good night's sleep doing that. Of course, with this lousy disease, all that could change tomorrow.

And I'm certainly not suggesting you start taking it again, EeFall. You know what will work best for you. I just didn't want people to be afraid to try it, worried it might keep them awake. Since we are all different, it might, but it is what allows me to sleep.

Your experience with dosage is the opposite of mine and I would never suggest to anyone to take less than one tablespoon or 7 grams of kratom because the stimulant effect is much greater at low doses. RLS and how meds affect us is different for many of us probably mostly because WED is a bunch of illnesses grouped together but the knowledge is not yet there to differentiate them. I have discussed the dosage with many over the years and have found many try a lower dose first from fear and find it does not work so they never try 7 to 12 grams thinking it will just be more of the same but the effects are much different. I would encourage anyone who tries it to try both a lower and higher dose to see if either one works for them. The reality is that many people feel nothing at all which is also curious but shows the difference in each of us.