Does anyone have the experience of medication making their rls worse? My husband has tried it all (mirpex, gabapentin, requip, etc) and they make him feel fine for a few days, but then he says it makes his rls far worse.
Now he thinks it's worse than it's ever been because of the drugs, but I wonder if he's just more keenly aware of the problem because he now knows what it's like when he doesn't have it.
The drugs are for sure not working for him, but is it possible they've made it worse? Anyone else feel the same?
Medications makes rls worse?
Vanessa,
I've not taken medications for my RLS, so I can't speak from experience. But I know that several of the main RLS medicines have potential problems. I don't remember which thing means "it gets worse after it gets better for a while" but look in the Pharmaceutical section of this forum for discussions of "augmentation" and "rebound". I think that your husband might be experiencing one of those problems. Worth reading up on, anyway, maybe.
You may also be right, though, that he's very aware of his RLS after some relief. I have had RLS for more than 20 years at least, but it's gotten worse as I've aged, and also I go through periods of better and worse symptoms. Sometimes I think that the more I think about it, the more I "notice" it (and the more it bugs me!
)
But I also think that RLS gets to be a "subconscious" thing with us... it's going on a lot, but we can mentally "put it aside" a lot of the time, because we're keeping busy, trying to keep our mind off it, etc. Unfortunately, keeping busy doesn't make it go "away"... so sometimes it seems like "just thinking about it" is "making it happen"... when I think really it was there all the time, we just were able to forget it or function anyway for a while.
That's what's going on with me tonight. I had my RLS start a few hours ago, but then I got busy with my family doing a few things, and now that I'm sitting down at the computer, I feel it still there and getting worse (as it does most nights, the later it gets). I don't think I didn't have it the past few hours, I just didn't notice it beause I was busy.
I notice the same thing with periods of time, sometimes. If I'm having a good few days, then all the sudden I'll think about RLS one night, and sure enough I have it. And sometimes it feels more frustrating when it's "back" after a few better nights. Seems like your poor hubby may have a combination of post-med problems and fluctuations and frustrations.
You guys hang in there!!
Sara
I've not taken medications for my RLS, so I can't speak from experience. But I know that several of the main RLS medicines have potential problems. I don't remember which thing means "it gets worse after it gets better for a while" but look in the Pharmaceutical section of this forum for discussions of "augmentation" and "rebound". I think that your husband might be experiencing one of those problems. Worth reading up on, anyway, maybe.
You may also be right, though, that he's very aware of his RLS after some relief. I have had RLS for more than 20 years at least, but it's gotten worse as I've aged, and also I go through periods of better and worse symptoms. Sometimes I think that the more I think about it, the more I "notice" it (and the more it bugs me!
)
But I also think that RLS gets to be a "subconscious" thing with us... it's going on a lot, but we can mentally "put it aside" a lot of the time, because we're keeping busy, trying to keep our mind off it, etc. Unfortunately, keeping busy doesn't make it go "away"... so sometimes it seems like "just thinking about it" is "making it happen"... when I think really it was there all the time, we just were able to forget it or function anyway for a while.
That's what's going on with me tonight. I had my RLS start a few hours ago, but then I got busy with my family doing a few things, and now that I'm sitting down at the computer, I feel it still there and getting worse (as it does most nights, the later it gets). I don't think I didn't have it the past few hours, I just didn't notice it beause I was busy.
I notice the same thing with periods of time, sometimes. If I'm having a good few days, then all the sudden I'll think about RLS one night, and sure enough I have it. And sometimes it feels more frustrating when it's "back" after a few better nights. Seems like your poor hubby may have a combination of post-med problems and fluctuations and frustrations.
You guys hang in there!!
Sara
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Guest
hi vanessa,
I'm glad you are understanding of your spouses condition and trying to learn more about it. My husband is at wits end with these doctors. He has advocated for me many times to get them to understand what is going on with me and how it affects us.
My doctor's current "cure" is iron therapy but it's not working out for me... I've been up for 3 days straight on this stuff. I've read posts about it working for others so it may be worth a shot...then again i dont know whether men suffer from low iron like women do??
good luck to you and your husband... you've found a good place to get support..
hugs
mo
I'm glad you are understanding of your spouses condition and trying to learn more about it. My husband is at wits end with these doctors. He has advocated for me many times to get them to understand what is going on with me and how it affects us.
My doctor's current "cure" is iron therapy but it's not working out for me... I've been up for 3 days straight on this stuff. I've read posts about it working for others so it may be worth a shot...then again i dont know whether men suffer from low iron like women do??
good luck to you and your husband... you've found a good place to get support..
hugs
mo
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Butterfoot
- Posts: 43
- Joined: Fri Apr 15, 2005 3:11 am
- Location: Kissimmee, FL
- Contact:
Vanessa,
As Sara said, rebound and augmentation could be a possibility, although with a lot of people, it might take weeks/months/years before they experience these problems. With me, it took a couple of weeks on Sinemet. Doc told me to stay with the Sinemet if I could and added Permax to the mix. This week, I've started weening myself from the Sinemet and plan to keep it only for a drug holiday from the Permax if needed, and hope Permax alone will be enough.
If he's having no success with the dopamine agonists, maybe he should try another type of med. You'll find "sticky notes" in the "New to RLS" discussion area. Check those out. One of those has a list of all the different types of meds which have shown success for treating RLS. If nothing else, see if the doctor will prescribe a low dosage opiate pain medication such as Ultram or Tramadol. I don't think I've ever read a post from anyone stating that hasn't worked.
Best wishes to you and your husband on finding some relief and rest.
Margot
As Sara said, rebound and augmentation could be a possibility, although with a lot of people, it might take weeks/months/years before they experience these problems. With me, it took a couple of weeks on Sinemet. Doc told me to stay with the Sinemet if I could and added Permax to the mix. This week, I've started weening myself from the Sinemet and plan to keep it only for a drug holiday from the Permax if needed, and hope Permax alone will be enough.
If he's having no success with the dopamine agonists, maybe he should try another type of med. You'll find "sticky notes" in the "New to RLS" discussion area. Check those out. One of those has a list of all the different types of meds which have shown success for treating RLS. If nothing else, see if the doctor will prescribe a low dosage opiate pain medication such as Ultram or Tramadol. I don't think I've ever read a post from anyone stating that hasn't worked.
Best wishes to you and your husband on finding some relief and rest.
Margot
May only good come your way.
Trying Vicodin
Thanks all for the great moral and informational support!
He's been trying vicodin for a few days, so far so good, but that's the case with most meds for the first week or two before the side effects start kicking in with a vengence.
I'll keep you posted!
He's been trying vicodin for a few days, so far so good, but that's the case with most meds for the first week or two before the side effects start kicking in with a vengence.
I'll keep you posted!
Trying Vicodin
Thanks all for the great moral and informational support!
He's been trying vicodin for a few days, so far so good, but that's the case with most meds for the first week or two before the side effects start kicking in with a vengence.
I'll keep you posted!
He's been trying vicodin for a few days, so far so good, but that's the case with most meds for the first week or two before the side effects start kicking in with a vengence.
I'll keep you posted!