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PostPosted: Sun Feb 23, 2014 5:14 am 
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This all started in the year 2000 when I decided to commit suicide. Obviously I didn't do it but begged my wife to call a doctor to make an appointment because I was too depressed to do it myself. I went from a general practitioner who sent me to a shrink, who brought in a sociologist.

They figured I was clinically depressed because of something in my past, my parents split when I was 8, my dad had been dating a younger woman on the side, and my older brother, and infant brother, and I moved with my mother to another state. I'm also a guy by-the-way, I'm probably older than most on this forum, but I don't know that for sure. I'm 58 years old and have been married going on 39 years.

The doc gave me Remeron for depression and within 6 weeks I was out of the depression. After a couple of months both doctors saw me together and said that while I had had some mental type problems, I had handled them well and they thought there might be another underlying physical problem to my depression. I had continued to complain about how tired I always was, even though I was getting sleep, yet within the last year I would get up in the night sometimes for an hour or more restless. They sent me to a sleep doctor in their hospital.

The sleep doctor had me do a sleep study at the hospital. Techs spent a good half hour wiring my body up with sensors. Also their was a camera in the room which recorded my sleep. I was suppose to see the sleep doctor about a week after the sleepover but when I got up in the morning I was told to go to the doctor's office before leaving the hospital that morning. I was floored to find out that I had severe obstructive sleep apnea and periodic limb movements the entire night. I would jerk awake about every 30 seconds. When I fell asleep my tongue would relax and cut off the air to my windpipe.

It turned out that my depression was from having virtually no restful sleep at all during the night. I had no idea. They gave me a CPAP machine but at night I would tear the mask off my face while I slept, I just couldn't wear it. They gave me some meds but they did little good. This continued for 3 years until the doctor tried a newer type of CPAP machine that adjusted for the pressure when one breathes out or in, a lot more comfortable and I could actually wear it during the night.

Problem solved or so I thought but then as I said at the first I began getting more and more restless at night, until I would actually have to get up and pace back and forth without sitting down for hours. Finally, don't know why I waited several months, but I told the sleep doctor about the problem and he immediately knew it was RLS, restless leg syndrome. He put me on Mirapex and it worked for several years but the RLS became severe. For the past 6 years or so I cannot sleep at all without medications.

I have tried many times to take nothing but it is always the same. I can stay up about 7 days in a row, pacing about 16 hours a day, I can usually not lay down or sit down without medications. The symptoms are always worse in the evening. Over the last 14 years I have taken so many different medications for RLS that I have lost track, I only know that my sleep doctors themselves gave up hope, and one of them sent me to one of the most knowledgeable doctors in the world about RLS.

The medications are why I found this site. Mirapex is a horrible drug that eventually one augments on with RLS, not everyone, but many as I did. When one augments it actually makes RLS worse. Stopping the drug causes terrible withdrawals that include RLS restlessness so that it is like having my terrible restlessness, and then multiply that by a couple and it is pure hell. There was nothing they knew to do but to put me on opiates for awhile and then put me back on Mirapex when it would start working again. This happened until a month of methadone (yeah, they ended up giving me methadone) might allow the Mirapex to work for a month.

I found that I was terribly physically dependent on methadone as I have taken it for years on and off. They also gave me oxycodone, vicodin, all kinds of different meds like that. In 2008 I was getting really bad again and life just was not enjoyable. One of my relatives sent the police to my house one night because I think they thought I was going to take my life. One of the cops actually hinted to me that there were legal drugs online that might help.

I went online and found a forum that talked about legal drugs and while I thought it was all BS, I purchased a couple of things from vendors online. That is when I discovered kratom. Kratom was like my perfect high. It gives a euphoric feeling, peps me up a bit, and yet it is a sedative all at the same time. Totally legal. I started taking it plus going through the problem with methadone. They also put me on Lyrica because methadone makes me hyperalert. Lyrica makes me sleepy. I seem to have lost the capacity to be sleepy on my own anymore. I never go to bed because I am sleepy, I go to bed because I know I need to go to work the next day.

Last summer it became even worse. I was taking Mirapex, methadone, and Lyrica but it was no longer working, none of it. That is when the doctor had me slowly stop all 3 over a month and then to take nothing at all for 10 days. In about 6 weeks I may have gotten 6 hours sleep. I had bruises on my feet because I could never sit or lay down. I would pass out walking. I had bruises all over from walking into walls and falling over furniture. I started hearing and seeing things, which had happened before with little sleep, but nothing like this. It was like the movie The Shining. I was having whole conversations with groups of people who were not there. I woke up on the floor one evening having jumped off the couch. I thought I had jumped from one elephant to the other because I was performing in a circus.

I did successfully detox off those drugs, although I took kratom a few times during that period. I had to go back on methadone, that is what the doctor was hoping for, just one drug at a reduced rate after detoxing. After a week though he put me back on Lyrica because I wasn't sleepy even though methadone made the RLS symptoms go away. So that worked for awhile but the combination of meds began to make me a mean S.O.B. I was mean and depressed. I suppose a little like Dr Jekyll and Mr Hyde - I was Mr Hyde. I knew I had to do something after having road rage on the freeway. As it is I avoid most people if at all possible because of the constant lack of sleep.

So the doctor put me on Suboxone. I had to detox off of Lyrica and methadone again to do that (and kratom although I didn't mention that to anyone), that took another 5 weeks. Lyrica is just as difficult to get off of as methadone for me. So now I am just taking Suboxone, or should be. I'm starting to take kratom again. The Suboxone scares me. Usually with the other meds like methadone I take the dose and then take the same amount each day. With Suboxone it isn't working like that. At first I was on 1/2 a strip for a week, it didn't work, so up to 2 mg for a week, it didn't either, so the doctor increased it to 4 mg a day. I should be able to take it at 5 pm and then take the next at 5 pm the next day, but the Suboxone wants me to take it earlier and earlier.

There is nothing really else I can take, it is the end of the line. I have started supplementing it with kratom. Kratom makes me feel good and not tired. The problem is that I have one of the worse cases of RLS and sleep apnea in the country but now to control it I am totally addicted to Suboxone and kratom. I know I am going to need to increase Suboxone to 6 mg soon, probably not much of a dose if one is trying to stay off an opiate, but for me it is a lot, I have to be able to work or I am in big trouble.

I started out thinking I was depressed, found out it was restless leg syndrome and obstructive sleep apnea, and now to compound a terrible disease, RLS is also known as Willis-Ekbom disease, I am addicted to at least 2 medications, and I am not so sure that some of my current problems are that I am also continuing to have withdrawals from methadone and Lyrica. If you have read this far, thanks. I am looking for answers but don't know what the questions are.


Last edited by EeFall on Mon Feb 24, 2014 2:49 am, edited 1 time in total.

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PostPosted: Sun Feb 23, 2014 8:13 am 
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Your going to have to also do some work and learning here, learn to only use 4 mg of Suboxone and leave the Kratom alone .... Try this for 30 days .... Stop adding more opiates to your situation , you'll be stuck in the mud forever .... Also you become dependent on Suboxone NOt addicted, Mike


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PostPosted: Sun Feb 23, 2014 11:50 am 
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Painter wrote:
Your going to have to also do some work and learning here, learn to only use 4 mg of Suboxone and leave the Kratom alone .... Try this for 30 days .... Stop adding more opiates to your situation , you'll be stuck in the mud forever .... Also you become dependent on Suboxone NOt addicted, Mike


I will try to stay off the kratom for 30 days while just taking the Suboxone. I suppose I knew that in the back of my mind but I needed someone to confirm it. It is difficult for me to look at my own situation while sitting in the muck myself.

I didn't realize I had said addicted, I know the term is dependent. Physically dependent?. I will look around the forum and try to get up to speed. One of the problems with severe RLS is that it is difficult much of the time for me to absorb new information, I have had a doctor describe it as a symptom similar to having ADHD although I don't have that. Thanks for the help.


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PostPosted: Sun Feb 23, 2014 12:27 pm 
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Welcome to the forum, EeFall.

Good advice from Mike (Painter) in his post and I do agree. Kratom helps, but it can be very addictive. I believe it's best to taper off the Kratom rather than just stopping quickly. There's more info in the varius threads here about Kratom.

I know that RLS can be maddening at times. I never had much of it myself, but a few friends did and I got to experience their tough times dealing with it. I know there are many prescription meds that are designed to help RLS, but sometimes a more natural way brings better results.

I know there is one OTC supplement called Hylands Restful Legs that many have said did help. If you combined that with magnesium, potassium, bananas, and gatorade it's entirely possible for you to get relief, and may not require the other meds. Not always of course, and not for everyone either, but I know it's helped a few get through it. And a heating pad on the legs at the worst times has helped a few also. Just a thought and suggestion.

I was also thinking that if your taking 4mg of Suboxone per day, and after you take the dose you feel ready for more before it's time, then maybe you need a dose adjustment and go a bit higher on the sub? Your right that you should be able to take your dose at 5 pm one day and not need it until the same time the following day. That may indicate the dose is too low in my opinion?

Another suggestion is to split your dose and try taking 2mg in the am, and the other 2mg in the pm, approximately 6-8 hours after that first dose. That may help you instead of raising the dose? Again, just a suggestion for you to consider. This can also be a mental thing or mind games being played.

Take Mike's suggestion and read as much as you can here. There is so much valuable info that will take you in the right direction. Ask all the questions you have, and hang in there ok. Support is here for you along the way. Good luck and best wishes to you!

Karen


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PostPosted: Sun Feb 23, 2014 6:08 pm 
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Wow! So many years of sleep interruption! I'm sorry you've had to go through all of that!

I know a man who was diagnosed with beginning stage Alzheimer's, but after a few months they found that he had severe sleep apnea!! Apnea can be the cause of so many problems! My mom had it too along with RLS. Luckily the Cpap machine and medication for RLS seemed to work for her.

I agree with Karen. I think you need to experiment with taking a larger dose. Some people do divide their dose and take some in the morning and the rest at night. Usually we don't recommend that because it can continue addictive behavior, but for some people it seems that is the only thing that works for them.

For some people suboxone works well as an antidepressant. If you search you may be able to find some threads in the Buprenorphine and Mood section that talk about depression and suboxone.

Welcome to the forum!

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PostPosted: Sun Feb 23, 2014 10:34 pm 
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It is so gratifying to read through the posts, and see the great suggestions... there is so much garbage out there, and it feels good to be a part of something where people are really getting it right.

I agree with the earlier comments. It sounds like the starting dose was pretty low-- and the whole point of buprenorphine is to keep your blood level above a certain threshold, so that the opioid effect remains constant. Look into dosing efficiency too; some people are told to dose in crazy ways-- for example to 'rinse the mouth as soon as the strip is gone', etc. Google 'optimize absorption of buprenorphine' and you'll find a descripton of the principles involved.

The regulars on this forum know more about buprenorphine than most of the docs who prescribe the medication. It is very cool to see the good recommendations that are offered to people who wander by.


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PostPosted: Mon Feb 24, 2014 3:50 am 
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Brown Eyed Girl wrote:
I know that RLS can be maddening at times. I never had much of it myself, but a few friends did and I got to experience their tough times dealing with it. I know there are many prescription meds that are designed to help RLS, but sometimes a more natural way brings better results.

I know there is one OTC supplement called Hylands Restful Legs that many have said did help. If you combined that with magnesium, potassium, bananas, and gatorade it's entirely possible for you to get relief, and may not require the other meds. Not always of course, and not for everyone either, but I know it's helped a few get through it. And a heating pad on the legs at the worst times has helped a few also. Just a thought and suggestion.


Thanks for your comments. RLS is poorly named and still little understood. The problem with the name is that it would be like the story of the three blind men standing around an elephant and each one touches the animal and one says it is like a snake, another says it is more like a tree trunk, and another says it has one huge tusk.

When I say I have RLS I usually say severe RLS. There is nothing else to describe it to set it apart from RLS. Most people with RLS have mild cases or moderate cases. Mine has progressed since I was a small child, it has never stopped getting worse, although I have been duped into thinking it has stopped getting worse many times because I wanted to believe it.

It does not get progressively worse for many people with RLS. It remains a mild case or a moderate case, maybe even severe but it stays about the same. I think that what is going on is that instead of an elephant in the room there is a snake, a tree, and an elephant. From talking to many people over the years with RLS and doctors too, I think there are many diseases lumped together that the main symptom is a desire to move, especially in the evening.

Mine effects my whole body, not just my legs. It has nothing to do with natural remedies, warmth, or cold, rubs, topical ointments, or vitamins, herbs, and minerals (except maybe iron and ferritin and my blood has been pumped full of that stuff with intravenous injections). I have tried it all. My brain is starving for something and it isn't getting it. All the doctors can attempt to do now (because they just don't know for sure yet exactly what severe RLS is) is to give me medications that makes it seem like I don't need to move. It just masks it. If I go more than 4 hours without medications (don't know the time limit for Suboxone yet) then I know real fast that I have forgotten to take a dose because by then I won't be able to sit at all. A mistake like that usually means I won't sleep for another 24 hours.

It is difficult for people to comprehend, even my wife finds it difficult at times, it is just so unbelievable that I would not have believed it myself, but without any medications at all I do not sleep. It is not just no sleep but I can't stop moving so the best way to relieve the pain is to constantly pace for hours on end.

There have been periods of a year or more when the meds have not worked at all. I say goodnight to my wife in the evening (she sleeps 8 to 10 hours a night) and I say good morning to her when she gets up and I still haven't gone to bed. I most likely have been walking the rooms of our house the whole night. If I could concentrate enough to use the Internet I would have my laptop propped up on the couch with pillows, or sitting on the kitchen counter so I could stand up to use it. This has gone on for months like this without sleep. The only sleep is the second or two from the time I fall asleep while pacing and wake having hit the ground.

The medications usually work for awhile, if I can take them at all, because some have given me serious side effects. Eventually the doses are raised until I would no longer be able to work and so something else must be tried. If I were still 45 years old it might not be as bad, but 14 years have passed and it is wearing me out. Suboxone scares the heck out of me. Almost instantly I knew it had a hold on me and that it would be extremely hard to ever quit it.

As far as I have heard though there is nothing else to give me except for a morphine pump. That is most likely a game over scenario for me because I wouldn't be able to work. Hopefully a cure can be found before then.


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PostPosted: Mon Feb 24, 2014 8:38 am 
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EeFall wrote:
When I say I have RLS I usually say severe RLS. There is nothing else to describe it to set it apart from RLS. Most people with RLS have mild cases or moderate cases. Mine has progressed since I was a small child, it has never stopped getting worse, although I have been duped into thinking it has stopped getting worse many times because I wanted to believe it.
Well Sir, I had no idea your RLS was to the extent it is. Wow, that has to be so horrible for you to deal with on a constant level. I can't imagine how much it disrupts your life. I have never heard of anyone even coming close to the length of time you have dealt with this, and how it has progressed since childhood. I'm sure the doctor's heads are spinning also.

I'm not sure there will be much help here for you in the way of any kind of medicinal advice. I sure missed it with my lame suggestions. But I know you will continue to be supported as long as you are here. I do know that for certain.

Other than the suggestion I made of perhaps increasing your Suboxone dose, and was confirmed by our Dr. Junig, I'm not quite certain what else to say except I certainly hope and pray the doctors can somehow figure out how to get you some relief soon. I know you must be beyond discouraged. As you said, the medications only mask the true issues with your entire body RLS. The cause needs to be found, and there lies the problem. I guess other than a stay for tests and observation at places like the Cleveland Clinic, or Mayo Clinic, etc, I'm at a loss right now.

I wish you the absolute best. I hope you can come back soon to report some relief has been found. Please continue to keep us updated. Maybe someone else will read your post and have other suggestions. Take care and sorry I couldn't be more help.

Karen


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PostPosted: Mon Feb 24, 2014 12:37 pm 
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Hi Eefall,

Wow, my heart goes out to you! I know, to a small extent, what you are going through. I have dealt with RLS in a small degree since I was a child. But when I was pregnant, with all 3 of my children, and at some times while not pregnant, I have experienced the worsening of symptoms to the point that I would consider it severe. Probably not nearly as bad as you, but I know how MISERABLE it can be! The all over body RLS is sooo frustrating and painful, and NOBODY who hasn't been there themselves can come close to understanding it! It's way to hard to describe to people that haven't had it to make it make sense.

You are a person that I feel is a victim of the medical field. Treating you with drugs that are poorly understood. I'm so sorry that you have gotten to this place!

I agree with the suggestions to up your dose, you need to be at a high enough dose that your receptors are constantly covered. The opiate does an amazing job with RLS, at least for me...

I have also used kratom a few times over the years. I want you to understand though, that it is not nearly strong enough to break through the effects of the suboxone. More than likely whatever you are feeling from taking it with the suboxone is a result of the gratification you're getting from the ritual. In my experience, the kratom will not break through the barrier of the subs, even in low doses, so you shouldn't have to taper at all. Just quit taking it, and up the subs.

In your case, there should not be any worry about becoming further dependent on the meds. You have the greatest reason for being a life time patient on suboxone of anyone I've ever seen! If it were me, I would get myself comfortable on the subs and stay there! The great thing about this particular drug is once you get to that level, you won't continue to need greater doses over time. What works today will work 10 years from now!

Good luck dude, you deserve some peace and rest. I hope your doctor will see that and do some research on how suboxone works. You deserve to be treated by a doctor that really "gets it"!

Qhorsegal2

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PostPosted: Tue Feb 25, 2014 10:11 am 
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Brown Eyed Girl & qhorsegal2,

Thank you for your replies. I will be staying off the kratom and sticking to the Suboxone at 4 mg for awhile longer. I slept last night and didn't have to take it earlier yesterday. The doc said that it would take a while to ramp up in my system, hopefully it will continue. He is willing to give me 6 mg and I will do that if I have too. The doctor I have now is the best. I have never heard of using Suboxone for RLS yet it appears to be working, at least for now. Everyday I can work and pretend I'm okay is a good day. I tend towards being grumpy, I hope I didn't come off that way :)


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PostPosted: Tue Feb 25, 2014 12:04 pm 
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EeFall wrote:
I have never heard of using Suboxone for RLS yet it appears to be working, at least for now. Everyday I can work and pretend I'm okay is a good day. I tend towards being grumpy, I hope I didn't come off that way
Hey there!

You didn't come off as "grumpy" at all my friend. You came off as a guy struggling with some terrible symptoms. I thought you were very polite actually in asking for help. :D

I can't tell you how happy it makes me to hear the suboxone seems to be helping those nasty RLS symptoms! That is so awesome! I hope it continues to offer relief. I can't imagine how horrible it's been for you dealing with it for so long. Makes me cringe just thinking about it.

It's nice to know the doctor will raise your suboxone dose if needed. Guess you will have to decide if that's what you need to do. If it gets to the point where the symptoms are better like they are now, but not quite good enough, then maybe trying a larger dose of sub is worthwhile? You have nothing to lose and everything to gain in my opinion. Your call of course.

Thank you for updating. We LOVE to read these kind of posts! Please continue informing us how your doing.

BTW: No more Kratom = Good move in my opinion! :D

Karen


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PostPosted: Fri Feb 28, 2014 2:59 am 
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suboxdoc wrote:
Google 'optimize absorption of buprenorphine' and you'll find a descripton of the principles involved.


suboxdoc,

Thanks for this information. I found this site because of a video I saw on YouTube, it must be your video. I read several articles on the subject when I googled the above. Tonight I actually tried what I had learned. I take Suboxone at 5:30 pm unlike most on here I suppose because RLS is much worse at night but it probably makes no difference once it has ramped up in the bloodstream after a few weeks, but at first it helped.

I have the strips and used 2 under tongue but this time I did several things I hadn't done before. I had a dry mouth, I kept it in for 20 minutes (was shooting for 15 minutes but...) swished my tongue around several times throughout my mouth, never swallowed the entire 20 minutes, and didn't eat anything for an hour afterwards (I had read at least 15 minutes afterwards not to eat).

It is now about 11 pm and could have gotten to bed at 10:30 pm but was doing something. I have a feeling I will be getting a great nights sleep, I'm really zonked :lol: , I needed the extra boost and I can see that now. Thanks again.


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PostPosted: Fri Feb 28, 2014 3:34 am 
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That's great Ee,

I hope you do get a good nights rest!

Just as an aside here, you mentioned getting the sub ramped up in your system. That is exactly what you need to do, but the only way to keep it active for 24 hours is to take a dose that is above the ceiling level. You are probably teetering on the edge of it with 4mg, but 6mg should push you over if you find the 4mg isn't quite holding you like it should.

Great job on quitting the Kratom. I know it probably wasn't easy to decide to let that go, but I bet once the subs get in your system good you won't notice it at all. In fact, you should feel even better!

I'm really looking forward to seeing how this works for you long term. It could be the beginning of understanding how to treat RLS in severe cases such as yourself!

Q

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PostPosted: Fri Feb 28, 2014 11:12 am 
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Hey the EeFall,

Checking to see how your doing today? Were you able to get some sleep, and how was the RLS last night? I hope the sub continues to offer improvement to you. Jump on here and give us an update when you get a minute. Thanks. :D

Karen


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PostPosted: Sat Mar 01, 2014 5:45 am 
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qhorsegal2 & Brown Eyed Girl,

Thanks for your comments. There is good news and bad news. I slept for 6-1/2 hours, the most I have slept for several months. Other good news is that I did the same routine of taking the Suboxone tonight and it again worked better.

The bad news is that I got really ticked off at work about something and impulsively pushed a rolling office chair out of my way, slamming it against a desk. The reason I did it is unimportant. The important part is I am losing control of myself. The main reason for stopping the last batch of meds, the methadone and Lyrica were because of irritability, mood swings, and depression.

Same thing today just different med. I should be able to control myself but it is getting increasingly more difficult to do. What I think is happening is that since my sleep is 100% artificial that I am just not getting the REM sleep and deep sleep that I should be getting. Most of it is light sleep which is not part of sleep that one needs to make them refreshed, happy, and active.

I had hoped, as the doctor obviously hoped, that Suboxone would not bother me as much but now I am beginning to think it is the quality of my sleep. All I can do is continue along this path and see what happens. What is happening is that I fell asleep writing this almost 2 hours ago :D


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PostPosted: Sat Mar 01, 2014 9:30 am 
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Hey Ee,

It's not uncommon to get that super sleepy feeling from the subs at first. This med really takes at least a few weeks to get used to. I know it can be frustrating, especially in your situation, to spend that amount of time before you know if it's going to work. But, you should get passed that point soon. I often see people coming here in the early stages of treatment complaining that they can't stay awake, or feel that they are kind of passing out and getting a drug induced sleep at night. It gets better, promise!

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PostPosted: Sat Mar 01, 2014 11:32 am 
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qhorsegal2 wrote:
Hey Ee,

It's not uncommon to get that super sleepy feeling from the subs at first. This med really takes at least a few weeks to get used to. I know it can be frustrating, especially in your situation, to spend that amount of time before you know if it's going to work. But, you should get passed that point soon. I often see people coming here in the early stages of treatment complaining that they can't stay awake, or feel that they are kind of passing out and getting a drug induced sleep at night. It gets better, promise!


I have been getting the "kind of passing out and getting a drug induced sleep" which happens as early as 4:30 pm when I get home from work and then continues on and off during the evening. I've taken a lot of opiate type meds but this one seems more powerful to me, even more so than methadone or oxycodone. Is it more powerful? Or does it just depend on the person taking it? Thankfully I am able to work which for me is mostly thinking.

The main problem is that being able to do my job won't matter much if I punch someone out at work or get in a road rage situation or something like that. I hope it gets better.


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PostPosted: Thu Mar 13, 2014 6:20 pm 
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Dang RLS!!!!!!!!! I don't know a lot about it, but I know I have a little right know. I am currently detoxing off Suboxone for the second time. Its hard to sleep. I can't even began to imagine what it's like for you.

I don't know anything, except how to stay clean & sober. I was sober for over three years, and it was amazing. I relapsed because I quit following the advice that someone gave me. Here it is…….

1. DONT'T TAKE YOURSELF TOO SERIOUSLY.
2. STOP THINKING ABOUT YOURSELF AND DO SOMETHING (anything) FOR SOMEBODY ELSE.
3. YOU ARE EXACTLY WHERE YOU ARE SUPPOSE TO BE.
4. YOU WILL SLEEP WHEN YOUR DEAD.

I know it kinda sounds harsh, but it helps. Not even just for addiction, but in every aspect of life. You just have to trust that everything is going to work out with RLS. And seriously, stop thinking about yourself. Do something for somebody. Anybody. Bake a cupcake for your neighbor or something. It sounds weird, but it helps with depression, pain, and a lot of other things, You just have to stay open-minded and willing to change. The RLS might not change, but you can change your outlook and it will feel better.


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Fond Du Lac Psychiatry
Dr. Jeffrey Junig, M.D., Ph.D.

  • Board Certified Psychiatrist
  • Asst Clinical Professor, Medical College of Wisconsin

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