my meds never work

[peanut1]

I've been on Ledopa (simment), gabapentin, clonozepam, vicodin with gabapentin, and requip. All of the meds work no longer than 2 months if I take it on a regular basis. If I take it sporadically it works for about 4 months. Using requip sporadically worked only 6 days. I'm very concerned about keeping my job since I've been known to average 2-3 hours a night (all fragmented of course) for weeks. And none of these damn meds seem to be working!!!! Worse yet, they make the symptoms worse if I take them on a regular basis.

[rthom]

Are you taking anything else for sleep?

[ViewsAskew]

peanut1, I had similar problems - not nearly as severe, but often meds would stop working over time - tolerance, I suppose.

Over a year ago we hit on the idea of alternating two that worked for me in the past - Mirapex and methadone. I take each every other day. In over a year - heck, maybe close to two years now? - I've had at least 80% of my symptoms covered and can usually sleep at least 6 hours, and often 8. here and there it doesn't work so well, but those dips are to be expected.

Just a guess, but trying something similar to this - a day to a week on one, then a day to a week on another - might be effective.

Also, I'd write to Dr Buchfuhrer - rlshelp.org for the website, somno@verizon.net for email.

[peanut1]

I'm taking a lot of supplements and that seems to help some. Last night was a little better with sleep- 4 hours-and I didn't take a damn thing. Just good diet, no grain, sugar or caffiene or excitoxins. In the past, I tried the mirapex and I was up all night vomiting from it. Doc told me to cut it in half and eat a good meal, but I still had a bad headache the next day which felt worse than being sick to stomach from no sleep. But thank you for Dr. Buchfuhrer's email!

[ViewsAskew]

Mirapex can make people nauseous. I had significant side effects initially. My doctor told me to take .25 mg to start. I did a bit of research a few days later because of the nasty side effects and learned that many doctors suggest .125 and Dr B will tell people to cut one of those in half if they want. I cut one of the .25 in quarters and tried it - no problems. I can definitely say I still had weird lucid dreams and odd sensations in my fingers (like tremors) for a week or two. Once I was used to it, however, those things did go away.

I tried to manage mine with diet, exercise, regular bed-times, and supplements for 20 years. When I finally was too exhausted to do much and I lost a job (I had my own business) because a client said I looked tired and sick, I figured I had to try something different.

[peanut1]

I would definately be open to meds if they could work. I still have some mirapex and could try cutting the half in half. Perhaps I can get used to it where I don't get ill. Thanks for the recommendation. Too bad there isn't a drug that people can take for this that works indefinately.....

[ViewsAskew]

Too bad there isn't a drug that people can take for this that works indefinately.....

I hear you on that!

I haven't a clue on how long it will work, but so far me alternating two drugs has worked better than anything. I don't get tolerance, I don't augment, I don't have the worst of the "build-up" side effects. Very nice. To get here, I've tried at least 15-20 things, alone of in tandem. I wonder how long this can work? I hope it is on of those "indefinitely" things.

[rlsidaho]

I've been down the same road. At present, hydrocodone is the only med that works for me. I'm a bit concerned about tolerance but without taking any meds I am a complete wreck... Pacing all night long. Good luck on finding something. Have you tried tramadol/ultram?

[peanut1]

Have I tried tramadol? No. Went to doctor today and he wants me to increase the clonazepam as he stated there would not be the same effects as getting off the other meds, but I'm not so sure. I could probably still get a prescription for Tramadol since I'm working with multiple doctors here. And none of them seem to know what the bloody hell they are doing!!!!!!!!!!! (can you tell I'm riding on 1 hour of sleep?) Any way this doctor (after thyroid test is done and clear) is going to send me to a sleep expert who handles "weird sleep issues" such as mine (his exact words.) Maybe then I can get on a decent drug. I'm leary of mirapex since it makes me sick, but the tramadol and anything else that anyone has been successful with I would love to hear it!

At least I know there is hope that if I keep trying that maybe something will work for me someday...... I just don't understand how the RLS has went from very bad to very severe within a short period.

Also, viewsaksew, I posted something about this histamine issue on the zen post. Would love to get your feedback from it.

[ViewsAskew]

I think there may be something to the theory that taking drugs for WED can increase symptoms in some people - as if a switch were tripped. While it certainly doesn't happen to the majority, a sizable number of us escalate intensely once we start using drugs. Of course, could just be that it's the disease progression and that we're using the drugs because it's escalating.

Not sure what the doctor meant by not having the same effects stopping the clonazepam. It can be easy...or very, very hard...and everywhere in between.

Hope you can get to a new doctor soon.

[Polar Bear]

peanut: with regard to Tramadol I take it to supplement my requip and generally speaking it works pretty well.
Everyone has days/nights where for some reason the symptoms just have a mind of their own.
Taking a drug cocktail means that it keeps the requip within the limits and the tramadol at moderate limits. The only thing is that I wish the Tramadol would also relieve the pain of arthritis.

[peanut1]

Do you think for some the drugs progress the RLS/WED or it's just a temporary escalation? I have wondered, in the past, if the drugs, for some of course, make the RLS/WED symptoms permanently worse.

[Polar Bear]

My understanding is that the only medications that can cause augmentation are Sinemet, Requip, Mirapex, and less often Tramadol.
I am assuming that you are asking if augmentation can make rls/wed permanently worse.
Some folks would say that after augmentation their symptoms never ever got back to the base line but I think that it is more likely that worsening is temporary and the previous baseline could be achieved. There are a few members who feel augmentation permanently worsened their rls/wed symptoms.

[ViewsAskew]

Do you think for some the drugs progress the RLS/WED or it's just a temporary escalation? I have wondered, in the past, if the drugs, for some of course, make the RLS/WED symptoms permanently worse.

Supposedly, augmentation only happens with dopamine agonists (and very occasionally with tramadol) and it's always supposed to be temporary.

And, maybe it is.

But, I sure don't think it was with me, Susan, and a few others here. I think either a) it was permanent, or b)taking the drugs in the first place tripped a switch that change the WED in some way.

But, that's just my hypothesizing. I don't believe I could go from 25 years of very occasional symptoms to 24/7 symptoms in natural progression in a short period of time, when my mom's and sister's were just like me and they've never had an increase.

[badnights]

Peanut, have you had your ferritin checked? I forget if we've been through this already. You know that augmentation is way more likely if you have low ferritin (<50)?

Another thought is that if the Mirapex is making you nauseous, don't take it.

As for permanent worsening: I am convinced my WED was permanently severly worsened by taking WED meds. For me it was either ropinirole/Requip or gabapentin/Neurontin. I can't be sure which because I went off (almost) all meds for a month only after I had tried both of them. I initially worsened on ropinirole but I improved when I stopped it; then after 10 months on gabapentin, when i went off it, I had it 24 hr/day in arms and legs. Prior to all of that, I had symptoms that increased so gradually from childhood onwards that I barely noticed I wasnt sleeping well anymore. Then within a year after taking meds, I have it 24 hr/day in half my body. I don't think it would have progressed like that without some assistance from bad medication (by which I mean, it was bad for my body at that time).