A 24 hour patch to manage RLS?

[KBear]

Regarding the original topic of this post; I'm curious to hear about results from anyone who tries this patch, especially anyone who has previously experienced augmentation and/or rebound. I am very skeptical that this patch will be an improvement but I am willing to be proven otherwise.

[SquirmingSusan]

DH SWEARS that I have much, much worse hypnic jerks since switching to the methadone. . .and I know he's right because I can feel them. Last night as I was falling asleep and had that weird falling sensation in my brain, my whole body jerked as if I were a puppet. Sooooo, seems that this could be related. I wonder if Dr B has any info on it?

Ann, I usually don't get the hypnic jerks, but my other jerking can be as intense as hypnic jerks. I'm starting to worry that I'll injure myself jerking so violently.

So tonight, I'm conducting an experiment. No methadone. If it gets bad I'll take a hydrocodone. Otherwise just Valium. If the jerks start to lessen over the next couple days I'll know it's the methadone. And if the Valium controls it by itself, I'm back to where I was before the Requip. I took it for 10 years, I could probably take it again every night.

Gads I hate this condition!!!

[ViewsAskew]

I was wondering if my post made sense. . .wasn't trying to suggest that you were having hypnic jerks. . .just that maybe increased myoclonic action was a side effect, since hypnic jerks are a myoclonic thing. I think you go that. . .I hate this condition, too. . .I used to have a brain

[SquirmingSusan]

Well... I made it through the night without the methadone but it was very uncomfortable. The Valium didn't quite take away all the RLS sensations, but I had a lot less jerking. I took some hydrocodone and the jerking came right back. Sigh. It seems like I'm either stuck with crazy RLS or crazy myoclonic jerks.

[ViewsAskew]

I am putting head in sand. . .I just can't stand that thought that the Methadone is increasing myoclonic jerks in you or me. I know that they hypnic jerks are much, much worse. What I don't know is what is happening when I am asleep. I know I'm tired every day. I need at least 12 hours before I feel "normal." I can get by with 8 hours for a day or two, but by the third day I have no mental function left at all.

So, something is not right.

Your post is making me confront this. I truly do not know what I can do if I have to stop this. Of three or four opioids tried, it's the only one that worked. The DAs are completely out, the benzos are out, and Neurontin didn't work. I guess that leaves a couple antiseizure drugs I can try . <big sigh>

Then again, I've managed being tired for about twenty years. . .at least the RLS is gone. Maybe I can just pretend you didn't write that and I didn't read it.

[SquirmingSusan]

LOL, I'll pretend that I didn't write or read that too. But I don't like sticking my head in the sand - hard to breathe. I'll stick my head back under my pillow.

[turtlezen]

Hi,
I realize you posted a few days ago on the topic, but I'd like to add the little bit of info I know (and ask for info on a lot I don't). The sleep spec. I see treated me for severe PLMD. He didn't have much to say about my RLS since I have always had it and just tried to ignore it. Anyway he put me on Mirapex and Clonazepam (after a few tries of other combinations that did not work) I also take codeine or dilaudid for pain at night for my fibro. This combo works 60-70% of the time, which I consider O.K.

My questions are: I hear about the pain of RLS and would like to hear what kind of pain it is. I suffer from fibro pain daily, and I'm wondering if it could be RLS pain instead. What's the difference? Since I'm on my medication my RLS during the day is mostly under control. I still get some sensations of restlessness when I'm sitting....at the computer.

Long blog...sorry. Keep looking for that Doctor who knows everything about EVERYTHING. He/She must exist!!! Good luck
Val

[SquirmingSusan]

Val, I honestly don't know what the difference is between fibro pain and RLS pain. Both conditions are caused by a lack of dopamine in the brain. The main difference is that RLS is tied to the circadian rhythm, and in fibro it's all day and night.

Although RLS can be all day long. But usually, even if it is all day long, it gets worse at night.

[FidgetBoy]

Val- you pose a great question-- I've often wondered why most of the RLS literature you read don't mention the pain that can occur from this condition. I've even read that RLS "shouldn't be painful". My shins/calves/quads at times feel like a steady, dull drill is boring into them... someone said it felt like their legs felt like they were having a "migraine" and I thought that was a really good description.

Since RLS sufferers often have fibro and vice versa-- I would imagine it would be hard to figure out which is causing the pain. To make matters worse, I think the other symptoms of RLS/fibro are similar too-- fatigue, depression, etc.

Too bad we don't have a rheumatologist on this site...

[turtlezen]

Thanks Susan and Josh for your comments. Sometimes I think I'm just going crazy. Pain is pain, what when you have more than one thing going on it would be nice to know what is at the core. (not to mention I have osteoarthritis in almot all my joints.) But I am going to see my sleep doc tomorrow and I'm going to ask him every question I can think of to sort it out. (not expecting great results) Would be awesome to have a neurologist and and Rheum. on the site wouldn't it? One thing I do think is the immune system seems to be involved in all of these disorders?
Thanks so much for your imput....I have learnt so much from this site!!!
Val

[turtlezen]

Hi Josh...me again
Forgot to mention I loved your description of your shins,quads,calves feeling like a steady dull drill boring into them. Exacting how I would describe my situation as I sit here typing!!! I'm going to quote that tomorrow when I see my Doc. if you don't mind.
Take care,
Val

[abbycakes]

Hi guys,
Sorry it's been a while, since I'm the one who was the originator of this post!

Susan, I was so sorry to hear that the Baclofen turned out to be a major problem for you...hope I didn't jinx you!

Things have been going well on the oxycondone ER...I have to go in to renew my script soon, though, so we'll see what kind of run-around I'll get! I'm not sure if my neuro is going to push the new patch (geez, can't remember the name of it at this point in time). My only concern is that if he does, do I have to be "weened" off the oxycodone since I'm so use to it?

I've been dealing with some major depression issues, and have been on Wellbutrin, but am starting to wonder if my PMDD is getting worse (another condition, different board ). So, my GP is going to put me back on a low dose of birth control. Hope it doesn't affect my RLS and PMLs!

My summer "off" has still been a constant search for new doctors (can't find a stinkin' GOOD neuro or psych that's taking new patients--very disheartening!), but I did find a good orthodontist! Nope, can't help with my "jimmys," but is going to help my smile!

Take care everyone, and sleep well,
Jen

[Jan9222]

Hello!
I just started the Nuprin patch 6 days ago. I have had RLS for YEARS. I have been on EVERY med my neuro knows about (he also has rls, which is VERY helpful and he understands exactly what I'm going through!) and he just started me on the patch. I have been on Mirapex for years and it isn't as effective anymore and I'm getting agumentation again...I've had it many times and know what it is and what it feels like...NO FUN!!

Well, the first two nights using the 2 mg patch did nothing and I ended up taking my mirapex (along with all my other meds for rls/fibro/heart disease/depression and cholestrol). So, the last couple nights I used the 4 mg patch and am still taking the mirapex...I'm hoping the patch just takes a few days to get through my system and eventually get off the mirapex all together!! My doctor also told me that it's not FDA approved, but I have RLS so severe, he knows I'm willing to try anything! He is the best and most importantly, understanding doctor I have had (and I have had MANY doctors who just past me to a different doctor because I was the "worse case" they have ever seen and had no clue what to do with me!!) I did try the Requip and that made my legs 100 times worse!!

I also have been trying to get Social Security and have been denied three times...I even went to a hearing and I had a hard time sitting there without moving or rubbing my legs...but, the judge was a very hard judge and has NO CLUE to what people go through with this disease! She said that since I am getting LTD through my former employer since 2003 she stated in my denial letter that I "receive private disability benefits which would offer little incentive for her to return to work." I can not believe she said that....who in their right mind would not want to work and have a life and stay at home and go through what we go through?!!??! Also, she stated that since I moved from South Dakota to Florida (my husband got transferred and had to move with him....I guess according to her, I shouldn't be with him and stay where I was!!) that I can ride in a UHaul, I should be able to work....well, she has NO CLUE how many days it took us and how many times we had to stop (practically every rest area!) and how it was torture for me to be in there for so many days!!! There were also many other stupid things she had in there that she thinks I should be able to work! I am so upset about this...I do have a lawyer through my disability company which they hired and I still got denied! I think I have one more time to appeal which I will be doing...but, have little hope of getting it. This is the most frustrating thing and is very very very depressing!

I am so happy we have this website (thank you!! ) to vent and know that you are not going crazy and to see what other meds/advise other people are trying to get through this!!

Regarding the Nuprin patch, it really isn't helping for me, but I know some meds react different and effect people differently...so, if you can, just try it and hopefully it will help you!
Thank you very much and good luck to you all!!!

[Jan9222]

Hello!
I just started the Nuprin patch 6 days ago. I have had RLS for YEARS. I have been on EVERY med my neuro knows about (he also has rls, which is VERY helpful and he understands exactly what I'm going through!) and he just started me on the patch. I have been on Mirapex for years and it isn't as effective anymore and I'm getting agumentation again...I've had it many times and know what it is and what it feels like...NO FUN!!

Well, the first two nights using the 2 mg patch did nothing and I ended up taking my mirapex (along with all my other meds for rls/fibro/heart disease/depression and cholestrol). So, the last couple nights I used the 4 mg patch and am still taking the mirapex...I'm hoping the patch just takes a few days to get through my system and eventually get off the mirapex all together!! My doctor also told me that it's not FDA approved, but I have RLS so severe, he knows I'm willing to try anything! He is the best and most importantly, understanding doctor I have had (and I have had MANY doctors who just past me to a different doctor because I was the "worse case" they have ever seen and had no clue what to do with me!!) I did try the Requip and that made my legs 100 times worse!!

I also have been trying to get Social Security and have been denied three times...I even went to a hearing and I had a hard time sitting there without moving or rubbing my legs...but, the judge was a very hard judge and has NO CLUE to what people go through with this disease! She said that since I am getting LTD through my former employer since 2003 she stated in my denial letter that I "receive private disability benefits which would offer little incentive for her to return to work." I can not believe she said that....who in their right mind would not want to work and have a life and stay at home and go through what we go through?!!??! Also, she stated that since I moved from South Dakota to Florida (my husband got transferred and had to move with him....I guess according to her, I shouldn't be with him and stay where I was!!) that I can ride in a UHaul, I should be able to work....well, she has NO CLUE how many days it took us and how many times we had to stop (practically every rest area!) and how it was torture for me to be in there for so many days!!! There were also many other stupid things she had in there that she thinks I should be able to work! I am so upset about this...I do have a lawyer through my disability company which they hired and I still got denied! I think I have one more time to appeal which I will be doing...but, have little hope of getting it. This is the most frustrating thing and is very very very depressing!

I am so happy we have this website (thank you!! ) to vent and know that you are not going crazy and to see what other meds/advise other people are trying to get through this!!

Regarding the Nuprin patch, it really isn't helping for me, but I know some meds react different and effect people differently...so, if you can, just try it and hopefully it will help you!
Thank you very much and good luck to you all!!!

[ctravel12]

Hi Jan9222 and welcome to this group. It is a wonderful and supportive group. I have never tried the patch; however I do take mirapex (.125mg and just take half of this pill) and .75mg of clonazapem and so far it is working. I have just been on Mirapex this year and have often thought how long does it take before it stops working.

I am not glad that your neuro has rls, but sometimes that is a plus as my neuro has rls too so they do know what you are going through.

If you read alot of the different posts (not sure which ones they are) but some members tried to get ss disability and was not successful. We will keep pulling for you that you are able to get the ss disability. There are some people that are on ss disability and should not be so go figure.

I also took requip last year and it was a nightmare for me. I can certainly relate to that.

I am sorry about the judge's decision. Some people can really be very insensitive. I have often said let them walk in your shoes for a day, week or whatever and am sure they would see a different light.

Anytime you just want to vent, please do not hesitate. We are here for you as we do know what you are going through.

Please keep us posted on how you are doing and that you do find a med or meds that will work for you.