Methadone Users
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SquirmingSusan
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ViewsAskew
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I would ask the doctor about his rationale. Yes, we do want to keep doses low...but so low that they do not work? Somehow that doesn't seem to meet the mission of treating patients effectively.
The Clinical Management of RLS book (by RLS experts Hening, Buchfurer and Lee), clearly indicates that methadone doses are 5 to 10 mg every 8 hours. If you can get by with 5 for the whole day, so a minimum of 5 a max of 30 mg throughout the whole day.
I'm sure the doc has a reason; I'd want to know what it was. Hard to figure out what to do if he isn't telling you why.
The Clinical Management of RLS book (by RLS experts Hening, Buchfurer and Lee), clearly indicates that methadone doses are 5 to 10 mg every 8 hours. If you can get by with 5 for the whole day, so a minimum of 5 a max of 30 mg throughout the whole day.
I'm sure the doc has a reason; I'd want to know what it was. Hard to figure out what to do if he isn't telling you why.
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.
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ViewsAskew
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As I am thinking through the survey, I have been re-reading RLS books, paying close attention.
Related to the topic at hand, methadone and tolerance: "Methadone may cause less tolerance than other opioids as it does not cause intracellular forksolin-stimulated cAMP accumulation, a mechanism thought to contribute to opioid tolerance."
Related to the topic at hand, methadone and tolerance: "Methadone may cause less tolerance than other opioids as it does not cause intracellular forksolin-stimulated cAMP accumulation, a mechanism thought to contribute to opioid tolerance."
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.
Although I'm not sure, he may be trying to keep me from developing a habit, though with methadone, I don't think that's something to worry about. I'm just fearful that even if I try again now, and demand an explanation, he will say he can't see me anymore, which would be bad considering he treats for a number of other things.
Also, I have no idea where I would be able to find another doctor who is even willing to prescribe methadone at all.
I have no doubt that he has my best interests in mind; I just worry that he may be a bit too careful with me.
Also, I have no idea where I would be able to find another doctor who is even willing to prescribe methadone at all.
I have no doubt that he has my best interests in mind; I just worry that he may be a bit too careful with me.
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ViewsAskew
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Spiticus, I completely understand the reluctance to push things and alienate him.
I think, however, and I hope Josh comes by and can answer this from a pharmacist perspective, that taking too little of an opioid is definitely problematic.
One thing you can do, if you don't want to discuss it at this point, is to try taking all of it in the evening. I get by with that. I'm active enough during the day that I can take it all in the early evening and get enough relief to last me. I can't take it too early, or the RLS does get me at night.
I think, however, and I hope Josh comes by and can answer this from a pharmacist perspective, that taking too little of an opioid is definitely problematic.
One thing you can do, if you don't want to discuss it at this point, is to try taking all of it in the evening. I get by with that. I'm active enough during the day that I can take it all in the early evening and get enough relief to last me. I can't take it too early, or the RLS does get me at night.
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.
Its a hard place to be in, feeling trapped between asking a legitimate question or going on barely able to get through the day.
I suggest giving it some heavy thought.. If you have a tendancy to call people on their BS or something, maybe consider whether that would work on the doctor..
Instead of just coming out and going "Why won't you give me more?" Start it from a different angle..
" Look, Doctor.. I feel really conflicted about this situation. You gave me this medication hoping it would work, and then when it does work you refuse to give me an appropriate amount to manage my symptoms. You've made me feel very bad about even asking why you won't give me a legitimate increase, because now I'm afraid that simply pushing you for an answer is going to make you kick me out like I'm some kind of drug seeker. I just want an answer as to why you refuse to effectively treat my symptoms with the appropriate amount. Are you afraid I will be addicted? Do you need some litterature to guide you on the appropriate amount to prescribe for RLS? Because I have some right here.." (mayo algorithm in your hand)
Maybe too blunt or combative for your taste.. But no doctor should ever make you afraid to question their treatment. And if he does, god forbid, start down that kicking you out road.. Try coercing him with action. Tell him you feel like you should make a complaint against him to the state board for the way he is treating you and making you afraid to ask him questions because he is kicking you out for demanding answers..
It doesn't have to play out that way.. If you decide to push it, you can do it in your own way.. Maybe write him a letter along the same lines, simply letting him know that you NEED an answer. He works for you, and although I appreciate your situation, sometimes you have to force the tough issues..
Don't do anything you think will jeopardize your treatment, but if you decide its time to demand answers, just remember it's your body and you have to live with HIS decisions. If something isn't good for your body, you usually get rid of it.
I hope things will work out for you though.
I suggest giving it some heavy thought.. If you have a tendancy to call people on their BS or something, maybe consider whether that would work on the doctor..
Instead of just coming out and going "Why won't you give me more?" Start it from a different angle..
" Look, Doctor.. I feel really conflicted about this situation. You gave me this medication hoping it would work, and then when it does work you refuse to give me an appropriate amount to manage my symptoms. You've made me feel very bad about even asking why you won't give me a legitimate increase, because now I'm afraid that simply pushing you for an answer is going to make you kick me out like I'm some kind of drug seeker. I just want an answer as to why you refuse to effectively treat my symptoms with the appropriate amount. Are you afraid I will be addicted? Do you need some litterature to guide you on the appropriate amount to prescribe for RLS? Because I have some right here.." (mayo algorithm in your hand)
Maybe too blunt or combative for your taste.. But no doctor should ever make you afraid to question their treatment. And if he does, god forbid, start down that kicking you out road.. Try coercing him with action. Tell him you feel like you should make a complaint against him to the state board for the way he is treating you and making you afraid to ask him questions because he is kicking you out for demanding answers..
It doesn't have to play out that way.. If you decide to push it, you can do it in your own way.. Maybe write him a letter along the same lines, simply letting him know that you NEED an answer. He works for you, and although I appreciate your situation, sometimes you have to force the tough issues..
Don't do anything you think will jeopardize your treatment, but if you decide its time to demand answers, just remember it's your body and you have to live with HIS decisions. If something isn't good for your body, you usually get rid of it.
I hope things will work out for you though.
These are all really interesting discussions. I was increased to 20 mg 4 days ago because of the infertility hormone shots. The Neuro said the hormones change the way methadone is metabolized in the liver and that they increase the brains sensitivity tot he RLS.
Well, I had a couple of good days and then yesterday and today I am in agony again between 8 am and 4pm. It dies down in teh eveining and I sleep OK. They day time is bad, especially when I am stuck in a meeting.
Those two good days were great - I was not worried about going thru with the IVF/pregnancy but today I am starting to get scared again. I am waiting to hear from the Neuro, as I called to tell him I was still suffering.
Is it possible I will get to 30 mg and still suffer and he won't give me any increases at that point? He has never mentioned an upper limit, I think I just know what I've read here about typical doses.
If a person becomes tolerant, I don't know why it would be wrong to increase the dose, if the body uses it the same way and it has the same effect as it formerly did at the lower dose . . .
I can freeze my embryos if I chicken out at the last minute-but its expensive and only 50-60% of the embryos survive the thaw. More likely is that I'll be able to stay focused long enough to go thru with it . . . . I really want to have a good pregnancy and another baby . . . Of course, there's only a 30% chance of a pregnancy and I read that only 1 in 3 IVF pregnancies result in an actual baby. Hey - the embryos may not even live long enough to be implanted at all.
I wish we had more control over our dosage!!!
I really
Well, I had a couple of good days and then yesterday and today I am in agony again between 8 am and 4pm. It dies down in teh eveining and I sleep OK. They day time is bad, especially when I am stuck in a meeting.
Those two good days were great - I was not worried about going thru with the IVF/pregnancy but today I am starting to get scared again. I am waiting to hear from the Neuro, as I called to tell him I was still suffering.
Is it possible I will get to 30 mg and still suffer and he won't give me any increases at that point? He has never mentioned an upper limit, I think I just know what I've read here about typical doses.
If a person becomes tolerant, I don't know why it would be wrong to increase the dose, if the body uses it the same way and it has the same effect as it formerly did at the lower dose . . .
I can freeze my embryos if I chicken out at the last minute-but its expensive and only 50-60% of the embryos survive the thaw. More likely is that I'll be able to stay focused long enough to go thru with it . . . . I really want to have a good pregnancy and another baby . . . Of course, there's only a 30% chance of a pregnancy and I read that only 1 in 3 IVF pregnancies result in an actual baby. Hey - the embryos may not even live long enough to be implanted at all.
I wish we had more control over our dosage!!!
I really
Now that you are on the increase, what is your dosing schedule?
with 20mgs a day, getting 5mg doses 4 times a day, or an initial 10mg dose in the morning and then 5mg in the afternoon and 5mg at night, I would think would give pretty good coverage..
Did you change your dosing schedule once you got the increase?
with 20mgs a day, getting 5mg doses 4 times a day, or an initial 10mg dose in the morning and then 5mg in the afternoon and 5mg at night, I would think would give pretty good coverage..
Did you change your dosing schedule once you got the increase?
has anyone seen this - I heard about it on NPR:
a computer workstation that allows you to walk on a treadmill and work at the same time:
http://www.steelcase.com/na/walkstation ... px?f=30670
I want this badly - but $5000.
Also, I've hears of workstations that have adjustable desks so you can stand if you want.
a computer workstation that allows you to walk on a treadmill and work at the same time:
http://www.steelcase.com/na/walkstation ... px?f=30670
I want this badly - but $5000.
Also, I've hears of workstations that have adjustable desks so you can stand if you want.
I would try taking 10mg in the morning and seeing how long you go before you need another.
Something like
AM - 10mg, take 2.5mg in the afternoon once or twice, and then 2.5mg or 5mg before bed depending on what you think you need..
It may also take a day or so for any switches you make to become apparent
1: 10mg, 2: 2.5mg (afternoon), 3: 2.5mg (evening but not too close to bed), 4: 5mg (bed)
or
1: 10mg, 2: 5mg , 3: 5mg.
The diference with the second one is find a time between afternoon / bedtime where you don't take it too early or too late, and can make it until your bedtime dose.
Something like
AM - 10mg, take 2.5mg in the afternoon once or twice, and then 2.5mg or 5mg before bed depending on what you think you need..
It may also take a day or so for any switches you make to become apparent
1: 10mg, 2: 2.5mg (afternoon), 3: 2.5mg (evening but not too close to bed), 4: 5mg (bed)
or
1: 10mg, 2: 5mg , 3: 5mg.
The diference with the second one is find a time between afternoon / bedtime where you don't take it too early or too late, and can make it until your bedtime dose.
OK. I'll try one of these. THANKS.
I was asuming that the only reason the evening and night were going well was because of the medicine taken in the evening, and that any decrease in evening dose would cause the night to be bad, but it might be ok anyway.
in the 8 weeks after my son was born, I would take .5mg ativan 2 times during the day and nothing in the evening or night time because it was the easiest time for me to get thru. Perhaps I am seeing the same pattern now.
I was asuming that the only reason the evening and night were going well was because of the medicine taken in the evening, and that any decrease in evening dose would cause the night to be bad, but it might be ok anyway.
in the 8 weeks after my son was born, I would take .5mg ativan 2 times during the day and nothing in the evening or night time because it was the easiest time for me to get thru. Perhaps I am seeing the same pattern now.
Wow. I just had an amazing call with my neuro. I asked if there was an upper limit for him on methadone for RLS. He said that recently he had a woman come all the way from Alabama to see him in Baltimore. She was in the 3rd trimester of pregnancy and losing her mind with RLS. It took 100 mg methadone/day to get her under control!!!
So, long story short - HE will take good care of me. I won't chicken out of the IVF. AND everyone with RLS who can afford it should call Johns Hopkins Allergy & Asthma center for a good RLS doc!
So, long story short - HE will take good care of me. I won't chicken out of the IVF. AND everyone with RLS who can afford it should call Johns Hopkins Allergy & Asthma center for a good RLS doc!