Drugs worse than condition- feeling hopeless

[ethan]

All,

One month ago I stopped Mirapex (I have another thread on this topic). I suffer from PLMD- not RLS. Mirapex worked for many years and then stopped being effective- unclear as to whether I augmented or not but I think so. Since stopping Mirapex my movements have been bad and I am up for a lot of the night. I am starting to wonder if the drugs themselves are worse than the condition- I don't see the point of using a medication if I feel worse the next day. I am starting to wonder if my situation is hopeless.

Here is what I have tried:

Horizant- 600mg and 300 mg. Both made me tired throughout the day and depressed
Dilautid 2 and 4 mg- no side effect but it's not really doing much
Gabapentin- 600mg- also made me tired and depressed
Oxycodone 5mg- doesn't completely control movements and I feel tired and a little depressed the next day

I was just given a presription for MS Contin 15mg and Klonipin .5mg.

Thanks,

Ethan

[stjohnh]

Well certainly the drugs used to treat RLS all have significant side effects and most people have at least some minor side effects. I think most people here feel that patients with mild RLS should not take medications. Most people with severe RLS have got it figured out that there isn't a good solution. There are only variations of bad and "OK" treatments. It can be very discouraging.

[mh380]

Hey Ethan,
At least it sounds like you have a doctor who is willing to work with you to find a solution, which is already a reason to feel lucky!
Here are a few of my thoughts, which are based on what I know about RLS, not PLMS, but I think they should be relevant:
1. Are all of these medications things you have tried within the last month? If so, you haven't given yourself enough time to know whether the long-term side effects are intolerable. Some of the side effects of gabapentin/horizant/lyrica get better within the first month, so if you were too quick to switch between medications, you might have had too negative of a view of their effects (I think the same is true of opiates, but I haven't looked at research to know for sure).
2. With opiates, sometimes it's just a matter of experimenting until you find the right one, with methadone seeming like the one that works most reliably.
3. You didn't mention iron (oral or IV). Those are an option if your ferritin levels are not already high.
4. Even if you try everything, giving each one enough time to see whether it is a solution for you, and find that nothing is a net positive, there are other possibilities, but I think this is enough to be getting on with for now. This is a complicated disease, which is made worse by the fact that what works for one person won't necessarily work for another. So finding what works for you might take a fair amount of experimentation, but plenty of people eventually find a solution. Though if you found your solution within the first month of searching, I'd be pretty envious
Hope this helps,

Marc

[Rustsmith]

I agree with Marc comment about your doctor. The fact that he/she is willing to work with you and experiment with the use of different opiates is quite rare. You definitely have a keeper and should let others know.

The only thing that I would like to add is to keep in mind that Horizant is a proprietary drug that was designed to improve the delivery of gabapentin to the blood stream. If you get any benefit from gabapentin, then there is no reason to try the much more expensive Horizant. But the same is not true of the other way around. Horizant can work for some people when high doses of gabapentin will not and that is simply because Horizant can deliver more medication to the blood stream for those individuals.

[ViewsAskew]

Great posts so far. I can only add that I really empathize with you - I've often felt the same. And, I also have had nasty reactions re. side effects, making it very difficult to find something that works. I've tried many drugs alone and in combination. My best times have been with low doses of things in combination and alternating, rather than getting dependent or having to deal with augmentation again.

[badnights]

I agree with Marc that side effects can go away with time, and something like 3 weeks might be the minimum time to give a new med. However, I will warn that gabapentin is known to cause suicidal depression in a small percentage of users (I was one) and Horizant is gabapentin encarbil, a prodrug of gabapentin that becomes gabapentin in the body. Since you felt depression with them, it might be wise to leave them alone. If you do take them again, I found it important to take them at the exact same time every day to avoid severe mood swings.

As the others have noted, there are numerous other medications you haven't tried yet so don't be discouraged. None is a magic bullet, but there is almost surely a medication or combination of meds out there that will give you back your quality of life.

I think you're on the right track with MS Contin. You might not even need the Klonopin/clonazepam. If it were me, I would avoid the Klonopin and just find out how much MS Contin I needed to control my symptoms. You might need some back and forth with your doctor until you find a dose that works. Then if your symptoms are controlled and you're still not sleeping, try the Klonopin.

An alternative to the Klonopin, if you want to avoid benzos, is to try a small dose of Lyrica/pregabalin. It will not necessarily have the same side effects as gabapentin even though they're both anti-convulsants.The anti-convulsants can help RLS/WED patients sleep, probably by countering excessive glutamate (an excitatory neurotransmitter) in our brains. You would be getting some benefit for the RLS/WED symptoms and enhancing your sleep. Klonopin can help with anxiety, though, and Lyrica won't do that.

But I think you're finally getting somewhere, Ethan. Your doctor is willing to prescribe medication that works, so here's hoping it doesn't give you unwanted side effects and you find a dose that keeps your symptoms at bay!

low doses of things in combination and alternating

I'm highlighting Ann's comment because it's a good strategy for avoiding tolerance and minimizing side effects. Good luck with the new medication!

[debbluebird]

I know exactly how you feel. I'm going through the same thing regarding drugs.

[ethan]

Hey Ethan,
At least it sounds like you have a doctor who is willing to work with you to find a solution, which is already a reason to feel lucky!
Here are a few of my thoughts, which are based on what I know about RLS, not PLMS, but I think they should be relevant:
1. Are all of these medications things you have tried within the last month? If so, you haven't given yourself enough time to know whether the long-term side effects are intolerable. Some of the side effects of gabapentin/horizant/lyrica get better within the first month, so if you were too quick to switch between medications, you might have had too negative of a view of their effects (I think the same is true of opiates, but I haven't looked at research to know for sure).
2. With opiates, sometimes it's just a matter of experimenting until you find the right one, with methadone seeming like the one that works most reliably.
3. You didn't mention iron (oral or IV). Those are an option if your ferritin levels are not already high.
4. Even if you try everything, giving each one enough time to see whether it is a solution for you, and find that nothing is a net positive, there are other possibilities, but I think this is enough to be getting on with for now. This is a complicated disease, which is made worse by the fact that what works for one person won't necessarily work for another. So finding what works for you might take a fair amount of experimentation, but plenty of people eventually find a solution. Though if you found your solution within the first month of searching, I'd be pretty envious
Hope this helps,

Marc

Marc,

Thanks for your thoughts-

1. I tried Horizant for a couple of weeks a couple of months ago. I tried Gabapentin once. Both caused some depression. My wife said she really doesn't want me to take either again- I am not sure whether I can even handle taking it for a month or not. I feel like it was worse with the regular gabapentin but its hard to say as I only tried it one night.
3. I haven't checked my iron recently; however, every other time I have checked it, it was normal

[ethan]

I agree with Marc that side effects can go away with time, and something like 3 weeks might be the minimum time to give a new med. However, I will warn that gabapentin is known to cause suicidal depression in a small percentage of users (I was one) and Horizant is gabapentin encarbil, a prodrug of gabapentin that becomes gabapentin in the body. Since you felt depression with them, it might be wise to leave them alone. If you do take them again, I found it important to take them at the exact same time every day to avoid severe mood swings.

As the others have noted, there are numerous other medications you haven't tried yet so don't be discouraged. None is a magic bullet, but there is almost surely a medication or combination of meds out there that will give you back your quality of life.

I think you're on the right track with MS Contin. You might not even need the Klonopin/clonazepam. If it were me, I would avoid the Klonopin and just find out how much MS Contin I needed to control my symptoms. You might need some back and forth with your doctor until you find a dose that works. Then if your symptoms are controlled and you're still not sleeping, try the Klonopin.

An alternative to the Klonopin, if you want to avoid benzos, is to try a small dose of Lyrica/pregabalin. It will not necessarily have the same side effects as gabapentin even though they're both anti-convulsants.The anti-convulsants can help RLS/WED patients sleep, probably by countering excessive glutamate (an excitatory neurotransmitter) in our brains. You would be getting some benefit for the RLS/WED symptoms and enhancing your sleep. Klonopin can help with anxiety, though, and Lyrica won't do that.

But I think you're finally getting somewhere, Ethan. Your doctor is willing to prescribe medication that works, so here's hoping it doesn't give you unwanted side effects and you find a dose that keeps your symptoms at bay!

low doses of things in combination and alternating

I'm highlighting Ann's comment because it's a good strategy for avoiding tolerance and minimizing side effects. Good luck with the new medication!

Beth- isn't lyrica another form of Gabapentin? Given that Horizant and Gabapentin caused me to feel depressed, won't Lyrica do the same?

In terms of the MS Contin and other opiates- my doctor seems unwilling to prescribe higher doses. I tried the MS contin last night and it wasn't great. I was up until 4:30 am.

[debbluebird]

Some people can take Lyrica. Prefer Gabapentin, reluctantly. I was suicidal with Lyrica. But, either way, I don't feel they cover the symptoms very well. Good luck.

[ethan]

Some people can take Lyrica. Prefer Gabapentin, reluctantly. I was suicidal with Lyrica. But, either way, I don't feel they cover the symptoms very well. Good luck.

Deb- just to clarify- some people can tolerate Lyrica but can't tolerate Gabapentin or Horizant?


Thanks,

Ethan

[ViewsAskew]

I have found that my reactions have varied over time. At the moment, I am not having issues with gabapentin and mood, nor did I the first time I tried it. But, a few years ago, I used it and definitely moved into depression quickly. BUT! I almost never take anything alone. It very well could be that what I was taking it with a few years ago was different from what I am using now and originally, hence it's the complex interactions between drugs that made it happen. Who knows.

I do not know many truths related to treatment; one that I do know is that what works or doesn't work in one situation may be very different in the future.

Oh - in studies comparing pregabalin to gabapentin, there are differences in side effects.

[badnights]

Hi Ethan
Lyrica/pregabalin is similar to gabapentin but not the same, and yes, I am saying that you won't necessarily experience the same side effects with one as with the other. So it's worth a try. I was opposite to Deb - the gabapentin made me suicidal, but I now take a small amount of Lyrica (75mg) 5 nights out of 7 with no ill effect.

Does your doctor seem to have much experience with WED/RLS? If he won't raise the dose of MS contin, then you need to explain two things to him: one, what your life is like (no sleep, being tortured, etc); and two, all the things you're doing to control the symptoms (eg, quit caffeine, stand up at my computer, do squats before bed, etc.) He needs to understand that you're doing all you can, and life still sucks. It is a medical problem, he needs to suggest a medical solution. And if that doesn't work, another one. And if he's in over his head, he needs to refer you. But you need to move with him gradually, not tell him what you think he should do.

Hopefully after you inform him of those two things, he will go back to the drawing board and learn more about treating refractory WED/RLS.

[ethan]

Beth,

He is experienced with RLS but I agree about the doses- all the media hype about opiods sure isn't helping. I started using kratom 2 nights ago and it has been INCREDIBLE. I have had almost no movements and haven't taken any pharmaceuticals at all. I am praying it continues to work (1/2 teaspoon twice per night).

[ViewsAskew]

Beth,

He is experienced with RLS but I agree about the doses- all the media hype about opiods sure isn't helping. I started using kratom 2 nights ago and it has been INCREDIBLE. I have had almost no movements and haven't taken any pharmaceuticals at all. I am praying it continues to work (1/2 teaspoon twice per night).

Excellent!