PLMS
PLMS
As some of you know, I am a lifelong RLSer and a couple of months ago I augmented on Requip and have been trying to get things back under control since then. Since the Requip fiasco, I have had 24/7 RLS. The good news is that I have started having breaks from symptoms during the day. The bad news is that my husband has now moved to the couch because I literally kicked him out of bed. My question is, has anyone had PLMS (or PLMD) and gotten it under control with medication? If so, what was the medication and how long did it take to work? Before I augmented, the Requip helped with the PLMS. I am currently on Mirapex (1mg) and Ultram. Have been on the Mirapex for almost a month and the Ultram about the same. Only a combination of the two is helpful for my RLS. Mirapex alone just doesn't cut it. I'm so exhausted all the time and I know it's because of the PLMS and the fact that I am not getting a good night's sleep - ever. And I believe that is also the reason I wake up so sore every morning. Anway, any thoughts would be appreciated. Thanks in advance for any thoughts.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Brandy, I believe that the parkinson's medications are among the medications used to treat PLMS... It is possible that you might find relief by increasing your Mirapex...
Here is the link to the So California Support Groups page on suggested medications for treating RLS/PLMD
http://www.rlshelp.org/rlsrx.htm
While looking through a couple sites it mentioned that some antidepressant medications may also increase the frequency of limb movements.
http://www.srhc.com/services/sleepdisor ... s_plmd.htm
http://www.medicinenet.com/periodic_lim ... rticle.htm
Just throwing this out for discussion ... this is from my notes, how Ultram works. This drug is a weak opioid itself and it breaks down into a metabolite that has stronger opioid action. However, the analgesic properties do not rest entirely on its activity as an opioid. It also inhibits the re-uptake of serotonin and norepinephrine in the central nervous system (increasing their concentrations). These transmitters help filter out some of the pain signals coming down from the brain that would otherwise generate the sensation of pain in the tissues. So Ultram has the dual action of both an opioid and an antidepressant such as Elavil.
So working properties similar to an antidepressant... it could be the Ultram, and you may check with your doctor if he would switch you to another opiod for a brief period of time to see if the PLMD lessens.
I also use Ultram daily, and my spouse comments from time to time that I still kick a lot... Now my perception is that it is usually on nights that I have had a fairly physical active day. I could be off on that, it could be every night, He works out of town a lot so I don't have anyone to really judge this. When he is home he hasn't ended up on the couch just yet, so I don't know!
*************Positive Thoughts************
Hazel
Here is the link to the So California Support Groups page on suggested medications for treating RLS/PLMD
http://www.rlshelp.org/rlsrx.htm
While looking through a couple sites it mentioned that some antidepressant medications may also increase the frequency of limb movements.
http://www.srhc.com/services/sleepdisor ... s_plmd.htm
http://www.medicinenet.com/periodic_lim ... rticle.htm
Just throwing this out for discussion ... this is from my notes, how Ultram works. This drug is a weak opioid itself and it breaks down into a metabolite that has stronger opioid action. However, the analgesic properties do not rest entirely on its activity as an opioid. It also inhibits the re-uptake of serotonin and norepinephrine in the central nervous system (increasing their concentrations). These transmitters help filter out some of the pain signals coming down from the brain that would otherwise generate the sensation of pain in the tissues. So Ultram has the dual action of both an opioid and an antidepressant such as Elavil.
So working properties similar to an antidepressant... it could be the Ultram, and you may check with your doctor if he would switch you to another opiod for a brief period of time to see if the PLMD lessens.
I also use Ultram daily, and my spouse comments from time to time that I still kick a lot... Now my perception is that it is usually on nights that I have had a fairly physical active day. I could be off on that, it could be every night, He works out of town a lot so I don't have anyone to really judge this. When he is home he hasn't ended up on the couch just yet, so I don't know!
*************Positive Thoughts************
Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
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ViewsAskew
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I know all about the separate bed issue - it was the beginning of the end of my previous relationship. At the time, my RLS wasn't bad, so I didn't go for help. He was so tired of having bruised shins, he moved to the guest room. It's tough on a relationship to lose that intimacy if you cannot make up for it in other ways. IN fact, I think you have to consciously make it up or it can have negative impact.
A couple of ideas for keeping the intimacy there (may not apply, but thought I'd throw them out):
Get a new mattress. Two of them work great. The first is to get a visco-elastic mattress - the Swedish thingees. We have one and I can kick and DH is not aware. The second it is get two twin frames and mattresses and put them together (there is a special pad) to make a king. The other person does not feel your movements because the frames and mattresses are separate.
Snuggle together before going to sleep. When he falls asleep (or vice versa) leave and go to the other place to sleep. At least you share the ritual of falling asleep together.
In terms of the medications, I do not kick, toss, turn, or wake up at all on Methadone. I don't think there are many studies about it related to PLMD, but I can attest that it does work for at least me.
A couple of ideas for keeping the intimacy there (may not apply, but thought I'd throw them out):
Get a new mattress. Two of them work great. The first is to get a visco-elastic mattress - the Swedish thingees. We have one and I can kick and DH is not aware. The second it is get two twin frames and mattresses and put them together (there is a special pad) to make a king. The other person does not feel your movements because the frames and mattresses are separate.
Snuggle together before going to sleep. When he falls asleep (or vice versa) leave and go to the other place to sleep. At least you share the ritual of falling asleep together.
In terms of the medications, I do not kick, toss, turn, or wake up at all on Methadone. I don't think there are many studies about it related to PLMD, but I can attest that it does work for at least me.
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 for your replies. FYI, here is the reply from my question posted to Dr. B.'s website:
"There are several choices for treating PLMS. The dopamine agonists are usually the most effective to reduce the PLMS but anticonvulsant medications such as Neurontin (gabapentin) are also effective. This can be taken with Mirapex.
However, we generally do not like to treat PLMS with medication when it is bothering your bed partener and not you. Alternatives to drug therapy include changing your bed situation. Instead of a queen or king bed, twin beds (which can be separated by a fraction of an inch as sleep time only) may work very well to keep your husband in the bedroom. Another choice is a memory foam mattress (such as a Tempur-Pedic) can dampen the leg kicks (make sure that you get a king size bed if possible)."
"There are several choices for treating PLMS. The dopamine agonists are usually the most effective to reduce the PLMS but anticonvulsant medications such as Neurontin (gabapentin) are also effective. This can be taken with Mirapex.
However, we generally do not like to treat PLMS with medication when it is bothering your bed partener and not you. Alternatives to drug therapy include changing your bed situation. Instead of a queen or king bed, twin beds (which can be separated by a fraction of an inch as sleep time only) may work very well to keep your husband in the bedroom. Another choice is a memory foam mattress (such as a Tempur-Pedic) can dampen the leg kicks (make sure that you get a king size bed if possible)."
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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Walking After Midnight
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ViewsAskew
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Great minds, you know. . . 
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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cornelia
Corrie,
Do you just take one dose of Neurontin at night? What dosage are you on for Neurontin and Requip? I'm going to take the e-mail to my next doctor's appt and would like to have some ideas about what dose works with Neurontin for PLMS. Thanks, everybody!
Do you just take one dose of Neurontin at night? What dosage are you on for Neurontin and Requip? I'm going to take the e-mail to my next doctor's appt and would like to have some ideas about what dose works with Neurontin for PLMS. Thanks, everybody!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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cornelia
Hi Brandy, I am on 1 mg Requip, because my neuro is a firm believer that more is not necessarily better. He added Neurontin only at night, because if taken during daytime I feel like a zombie (more people experience this actually).
I have been on 1800 mg, which worked wonderfully for PLMS. But it took so much energy away from my brains that I became sort of depressed. So we upped Tramadol and now I am on 1200 mg. I can feel the difference: I still sleep, but the quality is not good and am tossing and turning again.
Dr B always says that Neurontin works for most people in higher dosis.
Hope this answer will help.
Corrie
I have been on 1800 mg, which worked wonderfully for PLMS. But it took so much energy away from my brains that I became sort of depressed. So we upped Tramadol and now I am on 1200 mg. I can feel the difference: I still sleep, but the quality is not good and am tossing and turning again.
Dr B always says that Neurontin works for most people in higher dosis.
Hope this answer will help.
Corrie
How much Tramadol do you take? I am lucky enough to have found a doctor who, while not necessarily being an RLS expert, is very open to me doing my own research and bringing it to her for us to discuss. I'd like to share with her your experience (no names, of course). When you started the Neurontin, was your goal to get to 1800 mgs, or did you start and 300 and keep going until the symptoms got under control? You said you became depressed and had little brain energy. You only took one dose at night, but it stayed in your system all day the next day? Does Neurontin have any addiction potential? That is, will my doctor be hesitant to prescribe it, especially in higher doses? Thanks for your help on this.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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cornelia
Brandy, I started at 300 mg, which we all should do and went up gradually to 1800 mg in about 1 year.
Yes, Neurontin did take away my brain energy. I took 900 mg at 1800 and 900 at bedtime (now 600/600). Because of this taking away energy thing I can't and won't use it at daytime. I have been on Tramadol for 4 years (37.5 mg daytime, which gives me some energy). When I titrated down the Neurontin I went on Tramadol Retard 100 mg, which is very, very good for my brains, but not enough for my severe RLS. So I am going to ask my neuro for more.
Neurontin is not addictive. Titrating down was not easy, but doable.
Please ask if you want to know more.
You may use my name, I don't care, because I live in Europe, haha.
Corrie
Yes, Neurontin did take away my brain energy. I took 900 mg at 1800 and 900 at bedtime (now 600/600). Because of this taking away energy thing I can't and won't use it at daytime. I have been on Tramadol for 4 years (37.5 mg daytime, which gives me some energy). When I titrated down the Neurontin I went on Tramadol Retard 100 mg, which is very, very good for my brains, but not enough for my severe RLS. So I am going to ask my neuro for more.
Neurontin is not addictive. Titrating down was not easy, but doable.
Please ask if you want to know more.
You may use my name, I don't care, because I live in Europe, haha.
Corrie
Thanks so much for your help, Corrie! A couple more questions - I noticed that you said Dr. B. says Neurontin works for most people in higher doses. Is that written somewhere? I checked out his website and it said that this average dose is 800-900 mgs. He does say that one study said that 1800 was the average dose. Do you think this will be sufficient for my doctor's comfort? If I'm going to get up to higher doses, I want to be able to show my doctor the reasons. Also, were there any other side effects other than depression and lack of brain energy? Finally, we do have Tramadol Retard (we call it XR). Were you on the regular Tramadol before and then switched? Do you take it right at bedtime? Does it help you sleep all the way through the night? I have found that 100 mg of the regular Tramadol will calm everything enough for me to go to sleep, but I wake up several times EVERY night. With the slow acting nature of the XR, I wonder if it would work well enough to help with the initial relaxation. Thank you again. I can't tell you how much I appreciate it!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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cornelia
Hi Brandy,
I try to answer your questions one by one:
I think your docter will be the most impressed when you take the info from dr B's website.
But as I am always reading his answers on questions from patients I have noticed that he has said several times that N works most of the times better in higher doses. But I can't tell you where you can find these answers, as they are scattered on the Q & A letters. It is like looking for a needle in a haystack!
But Brandy, the bottom line is that you have to start with 300 mg and slowly work up to a therapeutic dose.
I don't think it will be a problem for a docter anyway to prescribe Neurontin, because it is believed to be a very safe med.
I and lots of other people notice brain energy problems with N and that is why you can become sort of depressed. N is a controversial med as many people like it and many people hate it. Some say it makes them a zombie, others say that it gives them a boost.
Tramadol, which I take only during the day, is my lifesaver, because it gives me some energy, as it does with lots and lots of people. Bus as I said, I don't think Tramadol works as well for PLMD as it does with RLS. Just my personal opinion. So that is why it probably is better to take N at night, because it really works for PLMD (and sleep).
At first I tried the 50 mg pill, but as at the time I didn't need 50 mg yet I asked for drops, in order to be able to play with dosages. I was on either 37.5 mg or 62.5 mg (about). This worked, but only for 2 hours per dose and in between nasty RLS.
Then I decided to take less N and asked my dr for Tramadol Retard, which I am on right now (100 mg). There are only a few posts about this Retard pill, as it was approved only in September 2005 in the USA.
I am not very pleased with it and the people from the other posts didn't like it very much either I think. It just doesn't help a lot. For me the only very good thing is that I feel I have a normal brain again. So in a few weeks I will talk to my neuro. I hope he will let me try some more.
I doubt if N will work enough for you (and me) on it's own, I mean without the help of a DA. It is a good add-on I think.
Hope this helps, Brandy, it is difficult to explain in another language than your own (I am Dutch).
Brandy, if you have more questions go ahead but you'd better pm me on jjalgera@xs4all.nl as I read this board only once a day.
Corrie
I try to answer your questions one by one:
I think your docter will be the most impressed when you take the info from dr B's website.
But as I am always reading his answers on questions from patients I have noticed that he has said several times that N works most of the times better in higher doses. But I can't tell you where you can find these answers, as they are scattered on the Q & A letters. It is like looking for a needle in a haystack!
But Brandy, the bottom line is that you have to start with 300 mg and slowly work up to a therapeutic dose.
I don't think it will be a problem for a docter anyway to prescribe Neurontin, because it is believed to be a very safe med.
I and lots of other people notice brain energy problems with N and that is why you can become sort of depressed. N is a controversial med as many people like it and many people hate it. Some say it makes them a zombie, others say that it gives them a boost.
Tramadol, which I take only during the day, is my lifesaver, because it gives me some energy, as it does with lots and lots of people. Bus as I said, I don't think Tramadol works as well for PLMD as it does with RLS. Just my personal opinion. So that is why it probably is better to take N at night, because it really works for PLMD (and sleep).
At first I tried the 50 mg pill, but as at the time I didn't need 50 mg yet I asked for drops, in order to be able to play with dosages. I was on either 37.5 mg or 62.5 mg (about). This worked, but only for 2 hours per dose and in between nasty RLS.
Then I decided to take less N and asked my dr for Tramadol Retard, which I am on right now (100 mg). There are only a few posts about this Retard pill, as it was approved only in September 2005 in the USA.
I am not very pleased with it and the people from the other posts didn't like it very much either I think. It just doesn't help a lot. For me the only very good thing is that I feel I have a normal brain again. So in a few weeks I will talk to my neuro. I hope he will let me try some more.
I doubt if N will work enough for you (and me) on it's own, I mean without the help of a DA. It is a good add-on I think.
Hope this helps, Brandy, it is difficult to explain in another language than your own (I am Dutch).
Brandy, if you have more questions go ahead but you'd better pm me on jjalgera@xs4all.nl as I read this board only once a day.
Corrie