First of all, yesterday I went on the site and saw there were 7 pages posted after my post a month or so ago and I couldn't make myself read them. I had not checked where it says I'll be notified with each new post. Mostly, though, I haven't been able to spend any time at the computer. I edit for a living, and when I feel like I can sit long enough, that's what I do. I"m behind on it, feeling pressured and everything's gone to heck.
I got my doc to increase the Methadone dosage to 15 mg at night. Through the haze about 4:30 this morning I realized something is going very wrong. I'm thinking about suicide a lot. I desperately want a way for this to stop. At night, I take the methadone, a puff or two of pot, 5 mg of Klonopine and that's the best time of the day; I get a few hours of relief, of ease, and go to sleep about 10. I am always up right around 12, 2, 4, then often stay up. I can usually work in the morning for a couple of hours. Then I'm uneasy from RLS; it's that restless feeling that keeps me from getting work done (or going to lunch or sitting in a chair, etc.). The worst is at night when I wake up in a frenzy. Sometimes I'm actually hopping around it's so bad. I can't do anything but move around quickly. I'll find something to do -- walk in the halls of our condo, go outside, mop the floor, etc. and I'll eventually calm down. But the beginning is horrible, much worse than it's ever been, and it can keep me up an hour before I'm calm enough to get back in bed.
This morning it occurred to me that the Methadone is not helping at all. Or I'm doing something wrong, mixing the wrong drugs. I remember Mirapex well, how it was wonderful at first, then slowly rebounded during the day. And it seemed to take me a long time to realize what was going on. This isn't really rebound, I don't think, but now both my nights and days are miserable.
I guess I'll e-mail my neurologist and ask for options again. And I wanted to come here and ask for any ideas from you'all. I'm sorry not to be more active, but I just can't be. I will check the box so I'll get replies in my e-mail. I know you understand and will help if you can.
It's getting worse
Hi Doety I am sorry for what you are going through. I have never tried methadone; however I do have the painful rls but so far mirapex and clonazapem has helped and hope that it continues.
Doety thinking alot of suicide alot really scares me. Can you get to see your dr right away, if not, please go to ER and let them know what is happening.
I cannot say mixing the meds is helping or not as I am not a dr nor have any medical knowledge but please let your neuro know or if you go to ER.
Please keep me posted as I am really concerned.
Doety thinking alot of suicide alot really scares me. Can you get to see your dr right away, if not, please go to ER and let them know what is happening.
I cannot say mixing the meds is helping or not as I am not a dr nor have any medical knowledge but please let your neuro know or if you go to ER.
Please keep me posted as I am really concerned.
Charlene
Taking one day at a time
Taking one day at a time
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ViewsAskew
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I hope you do check - I know I sent you a PM awhile back and it didn't get read, so I guessed you hadn't been back. I was hoping it was because things were OK, though, and not this.
I don't use the combo you do...I haven't had these problems. I don't know if there is any relation to that - I am not suggesting causation, just stating I have no help in that regard to offer.
I am glad you are contacting your neuro. I truly hope that he or she has an answer. Per Zach's idea of spreading it out, I would definitely talk to the doc before doing that...while Dr B was clear in a response to me that his patients who took it once a day did not have physical withdrawal, that is not true of those who take it multiple times a day. And, of course, we're all individuals...what works for one may not work for another.
And, at this time, with thoughts of suicide, I definitely would say that something is wrong and the status quo needs to be changed. I did a quick search and the difficulty with finding anything related to these low doses is impossible. All of the pages and information are related to large doses and methadone maintenance. Yeesh. Hope your doctor knows more than I could find about any connection with depression or depressed thoughts. And, maybe there is not a connection...simply that you are terribly depressed from not sleeping for a long time.
I don't use the combo you do...I haven't had these problems. I don't know if there is any relation to that - I am not suggesting causation, just stating I have no help in that regard to offer.
I am glad you are contacting your neuro. I truly hope that he or she has an answer. Per Zach's idea of spreading it out, I would definitely talk to the doc before doing that...while Dr B was clear in a response to me that his patients who took it once a day did not have physical withdrawal, that is not true of those who take it multiple times a day. And, of course, we're all individuals...what works for one may not work for another.
And, at this time, with thoughts of suicide, I definitely would say that something is wrong and the status quo needs to be changed. I did a quick search and the difficulty with finding anything related to these low doses is impossible. All of the pages and information are related to large doses and methadone maintenance. Yeesh. Hope your doctor knows more than I could find about any connection with depression or depressed thoughts. And, maybe there is not a connection...simply that you are terribly depressed from not sleeping for a long time.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Thanks SO MUCH for your concern and help. My neurollogist called my husband (I hadn't really told him) and I appreciated that. So far, he's been a wonderful doctor, so concerned, answers my e-mails, etc. He insisted I call for a mental health appt. right away and I'm about to. He also wants to take me off everything and sort of start clean. I was thinking that was a good idea, although not sure how to do it and have a life. But first I'll start by dropping the pot, then slowly back off Methadone and see how it goes.
One thing: my husband and I had a long talk about it. He thinks there must be some wonderful doctor somewhere who knows all about this. I keep telling him there's not, that there's so little research and that the doc I've got suggested to ME that I try Methadone, when I hadn't heard much about it. That told me he was at least keeping up on things. It's the first time I wasn't telling some doctor what the latest treatment was.
My cousin from Baltimore is here, going back on the train tomorrow. They both said: why dont' you go back there with him and go to Johns Hopkins. My belief is that it wouldn't do any good. They'll check my iron (it's fine) and then we'll go through the incredibly long list of things I've already tried that may have worked for a while, then often made things worse.
There's not a secret doctor I should be talking to, is there? I'll let you know how things are going. And yes, the depression could be from lack of sleep and also this total feeling of helplessness that I'll never work again because I can't sit still.
One thing: my husband and I had a long talk about it. He thinks there must be some wonderful doctor somewhere who knows all about this. I keep telling him there's not, that there's so little research and that the doc I've got suggested to ME that I try Methadone, when I hadn't heard much about it. That told me he was at least keeping up on things. It's the first time I wasn't telling some doctor what the latest treatment was.
My cousin from Baltimore is here, going back on the train tomorrow. They both said: why dont' you go back there with him and go to Johns Hopkins. My belief is that it wouldn't do any good. They'll check my iron (it's fine) and then we'll go through the incredibly long list of things I've already tried that may have worked for a while, then often made things worse.
There's not a secret doctor I should be talking to, is there? I'll let you know how things are going. And yes, the depression could be from lack of sleep and also this total feeling of helplessness that I'll never work again because I can't sit still.
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SquirmingSusan
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Doety, so sorry you're having these troubles and can't get relief.
Stopping all the meds and starting clean sounds like a great idea in theory, but in practice I don't know how possible it is. Especially since you're already depressed and all.
I don't know about methadone, but I do know that the benzos can cause depression. It's listed here under the possible side effects. http://www.drugs.com/Clonazepam/ I know I developed depression after I had used Valium for a couple years.
Please do get a mental health evaluation. Suicidal thoughts are nothing to play around with. Hopefully you can get back on an even keel soon. It's tough, though, when you have both depression and RLS.
I wish you the best with it all. Take care of yourself.
Stopping all the meds and starting clean sounds like a great idea in theory, but in practice I don't know how possible it is. Especially since you're already depressed and all.
I don't know about methadone, but I do know that the benzos can cause depression. It's listed here under the possible side effects. http://www.drugs.com/Clonazepam/ I know I developed depression after I had used Valium for a couple years.
Please do get a mental health evaluation. Suicidal thoughts are nothing to play around with. Hopefully you can get back on an even keel soon. It's tough, though, when you have both depression and RLS.
I wish you the best with it all. Take care of yourself.
Susan
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ViewsAskew
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My only thoughts about Johns Hopkins is that they have the MOST progressive studies of anyone that I know of regarding RLS. That alone may make it worth it...
Might be worth it to check out their site - http://www.neuro.jhmi.edu/rls/edu.htm
Not sure if all their studies are on there, but a phone call explaining the situation and asking what they could/would do may (or may not) be informative and help you decide if they could help.
This disorder truly, truly is miserable.
Might be worth it to check out their site - http://www.neuro.jhmi.edu/rls/edu.htm
Not sure if all their studies are on there, but a phone call explaining the situation and asking what they could/would do may (or may not) be informative and help you decide if they could help.
This disorder truly, truly is miserable.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
D, Sorry you are having a difficult time right night. Great, that your hubby is looking out for you. Whatever you decide, I'm glad that you have faith in your current neuro and that he is responsive to you and your concerns. If he is competent and knowledgeable then that is also a plus and you are ahead of many here. Having said that, a phone call or inquiry is never a ba option. Best of luck, my friend.
M/
M/
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
doety--
Both methadone and klonopin have rather long half-lives for most people. One dose can basically do for the whole day, depending on body chemistry and need. However, you may be unlucky enough to be on the low end of the spectrum. If so, you may be do better with Zach's idea of spacing the doses at least a little, rather than getting one huge lump in the evening. Talk to your doctor about it.
Also, pot can cause paranoia in some people. If it can change your frame of mind with its presence, it's logical that it can likewise change your frame of mind as it departs. I certainly don't know enough to suggest that this is the cause of your issues, but it's worth checking. It's probably also the easiest one to remove from the equation if you want to test the theory.
Me, I found benzo withdrawal extremely horrible the one time I did it by accident with ativan. I was losing my mind, which I normally have a pretty solid grasp on, and in deep, deep, irrational despair about my life. I'm lucky it was in the early evening, and not at 3-4am, when we're already a little more likely to off ourselves, thanks a lull in daily biochemical cycles. My layman's occam's-razor guess would be that you're having that kind of issue somehow. Just a guess, though.
I don't know what your daily schedule is like, but if you can't find any other solution, you might want to consider a delayed bedtime so that you're more likely to be asleep during those wee hours that increase the likelihood of suicide. If you get up at 6am or 7am instead of 4am, you may find it a little easier to bear the (chemical?) depression. Also, if your RLS ebbs a bit in the morning, you may be able to stay asleep a little better/longer.
Both methadone and klonopin have rather long half-lives for most people. One dose can basically do for the whole day, depending on body chemistry and need. However, you may be unlucky enough to be on the low end of the spectrum. If so, you may be do better with Zach's idea of spacing the doses at least a little, rather than getting one huge lump in the evening. Talk to your doctor about it.
Also, pot can cause paranoia in some people. If it can change your frame of mind with its presence, it's logical that it can likewise change your frame of mind as it departs. I certainly don't know enough to suggest that this is the cause of your issues, but it's worth checking. It's probably also the easiest one to remove from the equation if you want to test the theory.
Me, I found benzo withdrawal extremely horrible the one time I did it by accident with ativan. I was losing my mind, which I normally have a pretty solid grasp on, and in deep, deep, irrational despair about my life. I'm lucky it was in the early evening, and not at 3-4am, when we're already a little more likely to off ourselves, thanks a lull in daily biochemical cycles. My layman's occam's-razor guess would be that you're having that kind of issue somehow. Just a guess, though.
I don't know what your daily schedule is like, but if you can't find any other solution, you might want to consider a delayed bedtime so that you're more likely to be asleep during those wee hours that increase the likelihood of suicide. If you get up at 6am or 7am instead of 4am, you may find it a little easier to bear the (chemical?) depression. Also, if your RLS ebbs a bit in the morning, you may be able to stay asleep a little better/longer.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
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cornelia
Doety, don't know if this is of any help; I'm on OcyContin at night (probably comparable with meth?). During the daytime I'm on Tramadol Retard. TR makes me more active and also it works as a anti depressant (for me and a lot of others). I wonder if this could be an option for you?
Yeah, this disorder sucks tremendously.
Corrie
Yeah, this disorder sucks tremendously.
Corrie
I promised myself that in the 2-hour window I have each day, I'd keep you up on "the drama."
Went to a psychiatrist yesterday (I'm trying not to drive. But in the parking lot, I backed into a neighbor's car to the tune of $3,000. Of course I did; I'd had 2 hours sleep). I was almost sobbing by the end of the appointment because he was so bleeping useless. I had been told he was a "phamacologist" of some note, so I wrote down everything I take, hoping he'd see some clashes in meds going on that would account for this last two weeks. Of course, I took him the requisite packet of the latest info and research on RLS. He said: "I treat depression, not RLS." Then he kept thumbing through his books that were, he said, about seven years old. I asked that he please read what I brought, and told him that his books were too dated. He said he's call some consultants and try to find an anti-depressant that would not interfere with RLS.
I figured well, I'll use him as a shrink, and said: is there anything you can tell me or we can talk about that will help me get through these nasty times, when I"m crawling on the floor because I'm tired of walking, and I feel so hopeless. He just said no. Today he called and said he'd phone in an RX for Wellbutrin.
I'm taking myself off Methadone, because I have to see if that's what's causing all this. Now I'm on 10mg, will go to 5 tomorrow night. I also know that I've upset that delicate balance between the physical and mental that most of us have. I'm frantic, have tied myself in knots and I can't trust the way I'm thinking. Last night, with a little high from the methadone, I talked myself into thinking -- ah, this is the night I'll sleep, I felt so relaxed and comfortable. Nope. Maybe an hour in little increments during the night. At 6 in the morning, I made my husband give me a 5 mg valium; that bought me another 1 1/2 hours. Thank goodness I have no work the rest of this week.
When I went off Mirapex a year ago, I had the Methadone to ease the way. This time there's nothing. My daughter, who also has RLS, is 11 years away from menopause, and I so much want her not to go through this. Right now I think I'm sorry I ever took anything. It seems I've gotten more messed up with the drugs I've tried than it's worth in the help I've gotten (if that makes sense). Also, I think I've always been very sensitive to drugs, so what's little for some people is big for me.
I know that there's supposed to be no rebounding from Methadone and I hope I'm not the bellweather for this. I just can't imagine what else would cause it. Will keep you posted. Thank you so much for your encouragement and support. d.
Went to a psychiatrist yesterday (I'm trying not to drive. But in the parking lot, I backed into a neighbor's car to the tune of $3,000. Of course I did; I'd had 2 hours sleep). I was almost sobbing by the end of the appointment because he was so bleeping useless. I had been told he was a "phamacologist" of some note, so I wrote down everything I take, hoping he'd see some clashes in meds going on that would account for this last two weeks. Of course, I took him the requisite packet of the latest info and research on RLS. He said: "I treat depression, not RLS." Then he kept thumbing through his books that were, he said, about seven years old. I asked that he please read what I brought, and told him that his books were too dated. He said he's call some consultants and try to find an anti-depressant that would not interfere with RLS.
I figured well, I'll use him as a shrink, and said: is there anything you can tell me or we can talk about that will help me get through these nasty times, when I"m crawling on the floor because I'm tired of walking, and I feel so hopeless. He just said no. Today he called and said he'd phone in an RX for Wellbutrin.
I'm taking myself off Methadone, because I have to see if that's what's causing all this. Now I'm on 10mg, will go to 5 tomorrow night. I also know that I've upset that delicate balance between the physical and mental that most of us have. I'm frantic, have tied myself in knots and I can't trust the way I'm thinking. Last night, with a little high from the methadone, I talked myself into thinking -- ah, this is the night I'll sleep, I felt so relaxed and comfortable. Nope. Maybe an hour in little increments during the night. At 6 in the morning, I made my husband give me a 5 mg valium; that bought me another 1 1/2 hours. Thank goodness I have no work the rest of this week.
When I went off Mirapex a year ago, I had the Methadone to ease the way. This time there's nothing. My daughter, who also has RLS, is 11 years away from menopause, and I so much want her not to go through this. Right now I think I'm sorry I ever took anything. It seems I've gotten more messed up with the drugs I've tried than it's worth in the help I've gotten (if that makes sense). Also, I think I've always been very sensitive to drugs, so what's little for some people is big for me.
I know that there's supposed to be no rebounding from Methadone and I hope I'm not the bellweather for this. I just can't imagine what else would cause it. Will keep you posted. Thank you so much for your encouragement and support. d.
Oh Doety I am so sorry for what is going on with you. I know saying this is not helping you but I am here for support.
Talking about support, do you have a rls support group near where you live? Just by talking to them may be of some help and they may also know of a dr who has knowledge of rls and can help you.
Please keep us posted. I know you can go to the rls foundation and it will have a link for support group leaders and you can put the city and state and it will show if there is a support group in your area.
Talking about support, do you have a rls support group near where you live? Just by talking to them may be of some help and they may also know of a dr who has knowledge of rls and can help you.
Please keep us posted. I know you can go to the rls foundation and it will have a link for support group leaders and you can put the city and state and it will show if there is a support group in your area.
Charlene
Taking one day at a time
Taking one day at a time
doety--
Please be careful coming down quickly off of the methadone. I came down by a quarter or so every couple of days and had some mild flu-like symptoms. Coming down suddenly by halves might be more unpleasant. If you're lucky, the long half-life with auto-taper it for you, but don't overdo it unless you really need to.
Did you try coming off of the pot, by the way? I can only speak for myself, but I've never felt like methadone makes me depressed or suicidal. I've gotta think, in my layman's mind, that you might be taking the wrong tack, into choppy seas I might add. I dunno, though.
Please be careful coming down quickly off of the methadone. I came down by a quarter or so every couple of days and had some mild flu-like symptoms. Coming down suddenly by halves might be more unpleasant. If you're lucky, the long half-life with auto-taper it for you, but don't overdo it unless you really need to.
Did you try coming off of the pot, by the way? I can only speak for myself, but I've never felt like methadone makes me depressed or suicidal. I've gotta think, in my layman's mind, that you might be taking the wrong tack, into choppy seas I might add. I dunno, though.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
doety wrote:I know that there's supposed to be no rebounding from Methadone and I hope I'm not the bellweather for this.
I just realized I missed this. *I* felt like I got rebound as I tapered down. Perhaps it was just subjective, but it sure felt worse than I expected it to. Are there studies that say for sure there's no rebound?
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.