What makes your RLS worse?
Thanks - I downloaded teh rlshelp.org card. I noticed that under the cautions for antidepressants it says that there is a possible advantage with remeron. I was taking remeron 30 mg with great success for my depression and hardly any problems sleeping, but my neurologist insisted on taking me off it, as it is said to have antihistamine properties. I miss it!
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SquirmingSusan
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Helen, if you were having great success with Remeron, and it wasn't bothering your RLS, then why quit taking it? There is one study floating around that shows that Remeron has a higher risk of causing increased RLS symptoms than most SSRIs (28% for Remeron to 9%for other SSRIs), but it doesn't matter that it's on the list if it's not causing problems for YOU.
We're all different in how things affect us and our RLS. OTOH, I don't know what the pregnancy risks are for Remeron.
If it works, don't fix it.
We're all different in how things affect us and our RLS. OTOH, I don't know what the pregnancy risks are for Remeron.
If it works, don't fix it.
Susan
Thanks, Susan. The Neurologist just wanted to see how I would do without it I guess. The other great thing about remeron is that you can quit it cold turkey - there is no withdrawal, except for getting gradually more depressed of course!
Maybe some time this year I'll ask the Neuro if he thinks I can go back on it.
It's definitely not the OBGYN's first-choice antidepressant for pregnancy but the available research seems to indicate it is not risky if avoided during the first trimester.
Maybe some time this year I'll ask the Neuro if he thinks I can go back on it.
It's definitely not the OBGYN's first-choice antidepressant for pregnancy but the available research seems to indicate it is not risky if avoided during the first trimester.
Hi! thanks for asking. Actually, after about 11 good days on 7.5 mg (5mg at 5pm and 2.5 mg at 5am), I started to have breakthrough symptoms again on Tuesday night and I can't think of anything to blame it on. I left a message with the neuro yesterday asking if he thinks I need to bump it up to 10 mg. The symptoms are not all the time - mostly in the morning but it actually started in the evening.
I'm worried (prematurely, I'm sure) that what is happening is that every 10 days or so I'm becoming tolerant of my dosage. Of course, the first week on 2.5 mg was not enough. Then, 5 mg worked great for about 8 days, then after about 10 days I started having symptoms. Then, after about 11 days, I started to have symptoms again. I've been on it for 31 days now.
When it works, it works so well! I hardly mention my legs . . . I don't have to go out and walk in this below freezing weather, I'm learning to sit down and relax again. I really hope that the methadone is going to work in the long term; it would be so great to live a normal life in which relaxation is within reach!
I'm worried (prematurely, I'm sure) that what is happening is that every 10 days or so I'm becoming tolerant of my dosage. Of course, the first week on 2.5 mg was not enough. Then, 5 mg worked great for about 8 days, then after about 10 days I started having symptoms. Then, after about 11 days, I started to have symptoms again. I've been on it for 31 days now.
When it works, it works so well! I hardly mention my legs . . . I don't have to go out and walk in this below freezing weather, I'm learning to sit down and relax again. I really hope that the methadone is going to work in the long term; it would be so great to live a normal life in which relaxation is within reach!
Good to hear it is working relatively well. It really sounds like you just need to get your dose straightened out..
Also its worth mentioning, breakthrough symptoms do happen, I get them from time to time, several times some days.. I usually just try to cope. Again, you may find that you need two full doses of at least 5mgs a day, or that spreading it out works better, 5 - 5 - 5 over 24 hours, etc.
Becoming tolerant to your dose isn't anything to become concerned about in the long run.. I've been on the same 15 - 20mg per day for about 6 months. I do have nights or days worse than others, and having it pop up in the middle of the day if I'm smoking a lot, etc I can usually cope with.
One thing I had to learn a lot, after being so conditioned to 100% relief due to my abusing, was just going with the flow. I know it sucks at night in particular cause you don't want to get up and do something distracting.
You could try taking your dose a little later too I suppose, and maybe get your shedule swinged around so it hits you in the daytime when you can be active with housework, errands, etc.
Also its worth mentioning, breakthrough symptoms do happen, I get them from time to time, several times some days.. I usually just try to cope. Again, you may find that you need two full doses of at least 5mgs a day, or that spreading it out works better, 5 - 5 - 5 over 24 hours, etc.
Becoming tolerant to your dose isn't anything to become concerned about in the long run.. I've been on the same 15 - 20mg per day for about 6 months. I do have nights or days worse than others, and having it pop up in the middle of the day if I'm smoking a lot, etc I can usually cope with.
One thing I had to learn a lot, after being so conditioned to 100% relief due to my abusing, was just going with the flow. I know it sucks at night in particular cause you don't want to get up and do something distracting.
You could try taking your dose a little later too I suppose, and maybe get your shedule swinged around so it hits you in the daytime when you can be active with housework, errands, etc.
Thanks for the reassurance. Sometimes it seemed from folks' postings that methadone was a miracle that totally eliminated their symptoms at all times! I guess my expectations needed adjusting a bit. Of course, I am not surprised at all when symptoms pop up during PMS.
All in all, it really has worked very well and I hope it continues to work well. I'm starting to get used to being up at night once in a while again. It's actually a chance for me to get some alone time - which I rarely get.
I find that when my husband gets really cranky (esp when cranky at ME), or if I discover I've done something really stupid, it instantly fires up my legs. This dies down quickly sometimes and slowly other times. If I get really upset I start twitching. If I can just dampen my emotional response, I guess I could get better control of these incidents.
I started up doing "walking meditation" again the other day. Does anyone else do this? Sitting meditation is out of the question when I am stressed, so walking meditation is a pretty good choice, though it can make things worse during really bad episodes, because it asks you to concentrate on the sensations in your body. (I find RLS usually gets better more quickly if I can distract myself--I think many others find this to be true also).
All in all, it really has worked very well and I hope it continues to work well. I'm starting to get used to being up at night once in a while again. It's actually a chance for me to get some alone time - which I rarely get.
I find that when my husband gets really cranky (esp when cranky at ME), or if I discover I've done something really stupid, it instantly fires up my legs. This dies down quickly sometimes and slowly other times. If I get really upset I start twitching. If I can just dampen my emotional response, I guess I could get better control of these incidents.
I started up doing "walking meditation" again the other day. Does anyone else do this? Sitting meditation is out of the question when I am stressed, so walking meditation is a pretty good choice, though it can make things worse during really bad episodes, because it asks you to concentrate on the sensations in your body. (I find RLS usually gets better more quickly if I can distract myself--I think many others find this to be true also).
Stress has been said by many to aggravate their RLS.. Perhaps in the future when its safe, you might be able to get some anti-anxiety meds or something if it becomes too much of a problem..
Also, I don't know if anyone covered this.. But assuming your IvF works, you need to be prepared for a possibly drastic increase in your RLS. Perhaps with some more adjusting of your dose to a higher amount you might be able to notice more of the calming effect methadone can have. It seems to help with my anxiety a lot, as did other opiates.
I don't know that anyone has claimed its a total RLS solution, but most folks do seem to agree that Methadone helps.. As I often admit I am a big advocate for its use, so if I gave you the wrong impression, you can blame me for that. Hopefully things will smooth over for you in a few more weeks time though.
Also, I don't know if anyone covered this.. But assuming your IvF works, you need to be prepared for a possibly drastic increase in your RLS. Perhaps with some more adjusting of your dose to a higher amount you might be able to notice more of the calming effect methadone can have. It seems to help with my anxiety a lot, as did other opiates.
I don't know that anyone has claimed its a total RLS solution, but most folks do seem to agree that Methadone helps.. As I often admit I am a big advocate for its use, so if I gave you the wrong impression, you can blame me for that. Hopefully things will smooth over for you in a few more weeks time though.
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ViewsAskew
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I think some of us DO get complete control with a drug - Requip, methadone, etc. But, most of us figure we're pretty happy with 80-95% control. If my RLS bothers me 1 hour out of the day instead of 24, I have pretty good control - 95% if my head can still do calculations.
But, because it seems so drastic, I think we do tend to sound as if it were a miracle. It seems that way when you can manage most of the day or on some days, all of the day.
No matter what, some of us cannot get that control with one drug. Some of us need two, three.
Per the stress thing, it really makes perfect sense. If dopamine is out of balance, we have RLS. When we get stressed, we change our brain chemistry instantly. I find that anxiety INSTANTLY makes RLS worse and when I have nasty RLS I am much more anxious. Recent reports say that we suffer from anxiety problems 12 times more than the average population. I think we don't really suffer anxiety problems more....the change in chemistry because of the RLS is what sets up the anxiety - it's part and parcel. At least for one type of RLS. Given that there are different genes, it's likely some RLS doesn't come with the exact same symptoms or even brain chemistry problems.
Of course, just me rambling.
But, because it seems so drastic, I think we do tend to sound as if it were a miracle. It seems that way when you can manage most of the day or on some days, all of the day.
No matter what, some of us cannot get that control with one drug. Some of us need two, three.
Per the stress thing, it really makes perfect sense. If dopamine is out of balance, we have RLS. When we get stressed, we change our brain chemistry instantly. I find that anxiety INSTANTLY makes RLS worse and when I have nasty RLS I am much more anxious. Recent reports say that we suffer from anxiety problems 12 times more than the average population. I think we don't really suffer anxiety problems more....the change in chemistry because of the RLS is what sets up the anxiety - it's part and parcel. At least for one type of RLS. Given that there are different genes, it's likely some RLS doesn't come with the exact same symptoms or even brain chemistry problems.
Of course, just me rambling.
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.
worse
I have a funny suspicion that sugar makes it worse -- hate to think that. I need to quit sugar for so many reasons, but talk about addiction!
What makes RLS worse for me is not getting exercise during the day. I have to get about an hour or more every day or I'm crazy at night. Stress certainly makes it worse.
I've given up thinking of RLS as a nighttime thing. I'm just used to it now happening during the day. I get up at night every two hours, ride it out, then go back to sleep. Then during the day it happens at random times, always if I get "trapped" in a meeting or someplace I'm supposed to sit quietly (that will not happen!!).
I'm taking (still) .5 Klonopine because it was prescribed long ago, I'm adducted and haven't bothered to kick it. I also take 15 mg. of Methadone about 8 p.m. It almost always helps me go to sleep -- but not to stay there.
ONE THING THAT HELPS is laying down -- on my stomach. That's the only way I can read or watch TV. I certainly couldn't lay on my back. Taking a hot shower or bath helps. Even tho I live in the city, sometimes at night when it's especially bad, I just take off walking. After a while I calm down.
What makes RLS worse for me is not getting exercise during the day. I have to get about an hour or more every day or I'm crazy at night. Stress certainly makes it worse.
I've given up thinking of RLS as a nighttime thing. I'm just used to it now happening during the day. I get up at night every two hours, ride it out, then go back to sleep. Then during the day it happens at random times, always if I get "trapped" in a meeting or someplace I'm supposed to sit quietly (that will not happen!!).
I'm taking (still) .5 Klonopine because it was prescribed long ago, I'm adducted and haven't bothered to kick it. I also take 15 mg. of Methadone about 8 p.m. It almost always helps me go to sleep -- but not to stay there.
ONE THING THAT HELPS is laying down -- on my stomach. That's the only way I can read or watch TV. I certainly couldn't lay on my back. Taking a hot shower or bath helps. Even tho I live in the city, sometimes at night when it's especially bad, I just take off walking. After a while I calm down.
Oh, Zach - I didn't mean that anyone misled me in any way! I think I just read between the lines and got an "impression". And, to be honest, it really does work better than other things I've taken besides benzos. SO I would never complain that I was educated about the possibility of methadone! I am very grateful! It works most of the time and the time it doesn't work are not so bad.
I know that the RLS could get much worse if I get pregnant. I don't think it got better after the baby was born though, so I wasthinking it wouldn't get that much worse if I got pregnant again. It is something to be prepared for and aware of though. Everynow and then I think maybe it isn't worth the risk that things could become A LOT worse. My neuro encouraged me to realize that it's not likely to happen. Of course, the docs all said it was not likely to continue after the baby was born, but it did anyway . . . . Life is all calculated risk, right?
I know that the RLS could get much worse if I get pregnant. I don't think it got better after the baby was born though, so I wasthinking it wouldn't get that much worse if I got pregnant again. It is something to be prepared for and aware of though. Everynow and then I think maybe it isn't worth the risk that things could become A LOT worse. My neuro encouraged me to realize that it's not likely to happen. Of course, the docs all said it was not likely to continue after the baby was born, but it did anyway . . . . Life is all calculated risk, right?
Yeah, it sure is, sometimes I don't decides not to take risks at all.. Shame its the ones that could improve my life in other sorely needed areas I never take, though, hmmm...
Doety, have you tried spacing out your Methadone so can get more even coverage, or is it just that 15 needed to barely hold you over? Maybe you should ask your doctor about a small increase to give you an extra dose for the daytime, to see if it helps. And maybe that will help you start to ween the Klonopin if you aren't thinking about your RLS as much.
Take it from me, if you are really in that situation you need to get off that stuff as soon as possible.
Doety, have you tried spacing out your Methadone so can get more even coverage, or is it just that 15 needed to barely hold you over? Maybe you should ask your doctor about a small increase to give you an extra dose for the daytime, to see if it helps. And maybe that will help you start to ween the Klonopin if you aren't thinking about your RLS as much.
Take it from me, if you are really in that situation you need to get off that stuff as soon as possible.
methadone?
Helen -- I discovered RLS hell when I was pregnant 40 years ago. No sleep 'til 6 in the morning. I watched my daughter do the same thing with her recent pregnancy. If you didn't have it with the first -- that's wonderful!! I guess it's anyone's guess what happens with a second. But I think it's typical for women to have an increase in RLS with hormone changes -- going through menopause was a nightmare.
Zach: Tell me more about dosage. I hadn't thought about taking it during the day because I don't want to get zonked. In the day, unless I'm trapped in a car, I can usually leave a meeting, stand up, or do lots of things to distract myself. But I'd really like to sleep at night! Couple of questions: how do you think I could get the Methadone to work better at night and 2) how would you suggest getting off the Klonopine? I used the Methadone to get off Mirapex, did it slowly and it worked well.
Zach: Tell me more about dosage. I hadn't thought about taking it during the day because I don't want to get zonked. In the day, unless I'm trapped in a car, I can usually leave a meeting, stand up, or do lots of things to distract myself. But I'd really like to sleep at night! Couple of questions: how do you think I could get the Methadone to work better at night and 2) how would you suggest getting off the Klonopine? I used the Methadone to get off Mirapex, did it slowly and it worked well.
Doety- I HAVE read that sugar makes it worse. I can't decide if that is true for me or not. HOwever, the anxiety about the possible increase in RLS produced by eating something very sugary like cake with frosting or a jelly donut - produces enough anxiety that I can't disentangle it from the actual sugar effect! I still eat an occasional jelly donut and I'll eat cake but I don't eat the frosting any more. I still eat ice cream once in a while. I also have another reason to avoid sugar, so that is helping me stay away.
Yes, the RLS came on during my first pregnancy at about half way thru, and never went away. I've been discussing getting pregnant again and ended up investigating and choosing methadone after many discussions with Zach and Ann and others.
Yes, the RLS came on during my first pregnancy at about half way thru, and never went away. I've been discussing getting pregnant again and ended up investigating and choosing methadone after many discussions with Zach and Ann and others.
Helen, I didn't read your posts carefully enough. I'm sorry to hear that you had RLS during pregnancy. I was lucky enough not to be working, so it didn't matter if I ran into things during the day, but I hated watching my daughter not sleep and have to be at a job all day.
It's infuriating, no doubt about it.
It's infuriating, no doubt about it.