Trying to get off requip but can't

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stitch
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Trying to get off requip but can't

Post by stitch »

Here we go again. Yesterday around 2 or 3 in the afternoon my legs started to bother me and it was way too early to take the Lyrica. So I would get up and do things and when I sat down they would start up again. I took the Lyrica and requip early around 6 and was ok for the evening.

Later when I take my meds before going to bed I just took the Lyrica and Clonzapan and went to bed. I was there for about 15 mins and the legs started so I knew I was in for a bad nite.

Not only both legs but both arms were restless and I walked until about 4am and then got dressed and drove to the 7-eleven and got some cigs. Now I have not smoked for over 3 yrs but i knew it would help(all in my head) and I watched it get light out.

I couldn't take it any longer so I took my Lyrica and requip at 6am and fell asleep in my chair. So I can't just make it on 1 requip a day.

I did call the neuro dr and I will see him on May 16th and at that time I hope I can change to something else. When I see the pain dr I will tell him I can't stop the requip until I see the other dr. I don't even know how well the Lyrica is working , but I don't want another nite like last nite.

I HATE this thing called RLS. I want it to be the way it use to be when I had them under control. Back pain was pretty bad today because of the rain.

I am getting sleepy so I am going to bed and sleep I hope. Take care, Jeannie

micked
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Post by micked »

I just read your posting tonight; I started on Requip end of February and withing a month, my RLS was earlier and worse. My daughter was home and could not believe how hard my leg jerked. It shows what may work for one will not for another. I really thought Requip would be the answer. I amback on Klonopin.It is so frustrating; never did I think it would last so many years. :?

Polar Bear
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Post by Polar Bear »

On the subject of reducing requip. I have been on 2 mg for about 5 months. Haviing read so much about the side effects, and also finding that altho I was sleeping at night (more or less), I found the symptoms to be more frequent during the day.

So, I got the restless legs oil, and started using it a week ago, at the same time slightly reducing the requip from 2mg to 1 and a half mg. I am now back to walking the floors, going to the spare room and dreading going to bed at night in general. I am wondering was I foolish to try to reduce when I was at least sleeping at night.

My general doctor decided I should be referred to a neurologist but the waiting time is one year (things work different here in the UK) We don't pay insurance for health care but waiting lists are long. So I have decided to pay privately for the first consultation and see what he has to say. Also I assume that going privately.. considering the appointment will cost around £150 ($300) means I won't be trying to cram everything into 10 minutes. The Neuro will discuss matters and then presumably advise my general doctor regarding management. However my general dr did not know of any neuro who specialised in rls here in N Ireland. I await this appointment with anticipation but don't know what to expect in the way of actual help. Reckon I might know as much about rls as him... Well.. I don't exactly mean that, I am being flippant.. but I just feel that its hard to be optimistic.

Anyway.... Its 3.30 am, I have to get up at 7.00 to go to work. Having reduced the requip I have been badly twitchy for 4 nights in a row and getting very little sleep. I took 4 mg diazepam an hour ago to help me sleep... Am I crazy, should I just take the 2 mg requip and forget about trying to reduce it. I feel I was doing not bad in at least sleeping at night on the 2mg.

If I stay on the reduced dosage what happens do I continue like this, back up every night?? I have read where people take opioids to help at a time like this, but I don't have pain just the crawlies. Also, since reducing my dosage, my arms in particular are playing up more than usual.

Is it worth trying to reduce. Perhaps I am trying to get off it, and sort of pre-empting the time when I have to because it doesn't work any more.

What does anyone think, from their own experiences, about the pros and cons of reducing, or continuing on my prescribed dosage and let the future take care of itself.

Sorry for ranting on here, but it is so late, I am fed up, it is cold cos the heating is off in the middle of the night. I am wearing my dressing gown, a fleece, a pair of socks and my feet are resting on a cushion on the floor cos the wooden floor is cold!!! I got up so I wouldn't disturb my husband, who never complains, but I feel bad when I wreck his night's sleep.

I will go back to bed now, my arms and legs feel a bit calmer since I hve been up and about for nearly two hours, and the diazepam is probably starting to work. I only started to reduce the requip cos I got this oil and thought it would help in the process.

Thanks for listening folks, what would I do without this site, I check it pretty much every day. Again... sorry for going on,... and on... and on.
Boy, when I look back at this, it's like an essay.

Goodnight, let's try and get some sleep...
Hope you are all getting as rested as is possible.

Take care folk, Betty
Betty
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Polar Bear
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Post by Polar Bear »

Well... I went back to bed at about 3.45 am... and immediately the twitches started so I went into the spare room where I could thrash about and disturb only myself. My legs were ok (no idea why), it was my arms and hands that were so bad. I was feeling pretty sorry for myself and had a few tears. The time just dragged on tho I reckon I dozed for about half an hour cos I woke from a really crazy and emotionally upsetting dream at around 6 am. I then went back into our bed and hubby sort of woke and cuddled me but it was difficult cos my body was in overdrive and my right leg was jerking all over the place and I couldn't stay at peace. The tears came again and hubby suggested I took the day of work sick and have a rest , but I just never be off work sick, and anyway, how could I rest!! when its impossible to lie still. Eventually at 6.30 am I just got up and got ready for work, way too early.

Lord help us, you'd think there would just be a pill we could take. I don't know how to deal with much more of this.

So... here we go, another day, another dollar!! I love my work and I have a wonderful family life.... Is it possible that everyone has to have a cross to bear. I had spent 22 years married to a paranoid and psychotic schitzophrenic - he is now in a secure ward - before reaching the end of the line and divorcing him, and When I met my (second) husband 10 years ago, we are married 3 years, I thought life was perfect, and in just about every respect it is, but this awful cloud of rls is just getting worse...

Oh well, up and at it.... hopefully that's all the ranting I will need to do for some time. At least now I am up and about my arms and legs are at peace.

Have a good day everyone. Betty
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ViewsAskew
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Post by ViewsAskew »

Betty, you mentioned opioids...these are not just used for pain. I have no pain, but I take them. They work for some of us.

You are in a tough spot because you don't have an RLS specialist. I'm not a doctor, but it seems that people that don't respond to the dopamine agonists, the benzos, or the anti-seizures, end up doing one of two things.

A - they take a cocktail. But you are already doing that. So, you can try to find a new "blend".

B - they take an opioid, sometimes alone, sometimes in a cocktail. I take mine alone, as my RLS is daily, but not 24/7. Without meds, it would be about 12-14 hours of the day.

I can only imagine how hard it is not to have many choices for doctors. In some ways, even though we can get an appointment more quickly, those of us in the US are in the same boat - our docs don't know. You may find your neuro is willing to learn and you can educate him with Dr Buchfurer's book, the algorithm, and other items available from here. Or, it may turn out that you are better off at the GP's office, if he or she will listen to what the experts say.

I just hope you can find some peace, soon. I don't know the average time to peace, but it isn't very fast for most of us with more intense RLS. Heck, it took me 20 years before I even bothered to go to the doc. Then about 3 years to find the right approach. In the meantime, it is so hard to hang on. I just remember my gran - she had it all her life with no help - every night pacing, hitting her legs, soing the sewing machine leg thing to keep it at bay. She never slept before 4 or 5 AM. She made it to 86. When I'm thinking I just can't make it, I picture her, day after day, with little or no choice over making it. I hope you can find a picture to help you through until you find a better treatment option.
Ann - Take what you need, leave the rest

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Polar Bear
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Post by Polar Bear »

Thanks for your quick comment. It helps to hear from someone who knows 'what you mean',
I do have some codeine 15mg, just a few, which I had to plead for a couple of months ago for a long air journey. I also have codydramol (don't know what you call it in US) but it is paracaetamol with 8mg codeine. Tho I have been sort of using them. I'll maybe make a point of adding a little codeine to my requip at night and see if it helps. Thing is, that recently I've had about 6 weeks of regular nightime sleep tho the days were a bit iffy. Then Wham!! the whole thing has gone to pot, and who knows why?

Thanks again, I will now go to work and try and function as a normal person. Feel not to bad at the moment, considering the lack of sleep, just kinda shaky... I'm a legal secretary so let's hope there is nothing too demanding today.... I'd be liable to speak my mind!!

Bye for now, Betty
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micked
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Post by micked »

This is just my opinion, but I say off the Requip. I was so much worse on it. After being off it, I am back to "normal" for me. I have used codeine and still do sometimes. the first help I ever had was from a neruologist, who had the same problem. He is the one who got me going on the codeine and the Klonopin, when the codeine did not work anynore (I was on a low dose of codeine). I saw him before there was ever an RLS foundation. Might add I was one of the first to join it. We had typed newsletters at that time.

Klonopin gets me sleep most nights; my legs can still thrash around, as my husband tells me so. He thinks there should be a support group for the spouses.

It is hard and hard to imagine someone can't come up with a "cure".

Polar Bear
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Post by Polar Bear »

Thanks Micked,
I've got a private appt with a Consultant Neurologist on 5 May, two and a half weeks away, a Saturday so I don't need time off work. It will cost £150 ($300) for a half hour consultation. It remains to be seen if this will be worth while.

In the meantime I reckon I will tonight take a really strong sleeping pill that I have been saving for an emergency !!!! What sort of a way is this to have to talk.... I don't know, maybe I'll go back up to the 2 mg requip till I see the Neuro in 2 weeks. Cos since cutting down to 1 and a half mg, it has been really bad, and today the worst daytime ever. I have been standing at my computer desk since 12 noon, it is now 4.30 pm, and my legs are still 'jumping'. I don't know what to take for during the day. don't want to take an extra dose of requip. Course now my back is sore as well cos I'm working at a bad angle.

Micked, how did you come off the requip?

Ta, Betty
Betty
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cornelia

Post by cornelia »

Betty, when you lower the dose, you are likely to get worse RLS for a few days to a week and then it settles again, tat is what happened to me.

Corrie

Polar Bear
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Post by Polar Bear »

Thanks Corrie
Last night in desperation, I forgot about reducing the dose, took my prescribed 2mg requip, plus as a sleeping aid 6mg diazepam. I had a fabulous night's sleep (prob from built up exhaustian as well) slept from 10 pm to 7 am. The alarm woke me.
I will see neuro. Then I may try reducing requip with the help of a sleeping aid. That might assist things. Or is that out of the fat and into the fire, as we say over here :lol: Betty

sugbrendas
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Post by sugbrendas »

I'm sorry you're having problems.
I knew my RLS was taking a turn for the worse when my arms started getting involved.

I didn't have any luck on Diazapam.

My RLS med of choice is Klonopin. Before my surgery's they put me on the valium,took away the Klonopin and it was pretty bad.

talk to your new Dr about other meds.

good luck!
Finally able to sleep on average 9 hours a night!
Brenda

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Post by Polar Bear »

Ta, I read up on the Klonopin and thought it was pretty scary. but suppose they all are.

Difficulty is that this neuro I am seeing is a private appt, i.e. a one off at a cost of £150 ($300) for a half hour, for an opinion, I wont get to see him again, unless under our health service which has very long waiting lists of over a year. I don't have private insurance, it is not the norm in UK. He will discuss with me and then advise my GP. Tho my GP is very willing to work with me, he is just not too familiar with the rls.
When I see the neuro I will be talking 'like a washing machine' to cover as much as poss in the time limit.
Ta, Betty

ViewsAskew
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Post by ViewsAskew »

Betty, just as an FYI - most of us have found that when you reduce Requip (or Mirapex) you can't "cover" the increased RLS with a sleeping aid. FOr some reason, some of us get worsened RLS when we stop or reduce the dopamine agonists. Not all of us, but some of us, like Corrie, me, Brandy, and others who have written about it.

We have all found that you either have to live with it, or take an opioid. Living with it is hard and you won't sleep much, but the RLS reduces within a few days to a few weeks and is back to "normal." Taking an opioid will help you get through that period and let you get some sleep. When it happened to me, I tried three different opioids. One was too weak, the other made me ill, and the third (very strong) worked. I tried to stop the Mirapex three times before I was successful.
Ann - Take what you need, leave the rest

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Polar Bear
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Post by Polar Bear »

Thankyou Ann, I'll discuss the possibility of taking an opioid while trying to reduce, with the neuro.

Are you willing to tell me what you are actually taking as medication at the moment if you are not on requip/miripex etc. If I recall from the threads correctly, I think maybe an opioid it all you are taking.
Don't feel you have to say anything you don't want to.

Betty

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Post by ViewsAskew »

I don't mind at all. I take methadone, once a day. It works for about 14 hours for me, but it also has taken away almost all the afternoon stuff. I can even nap now. I take it about 7-8 PM and can easily sleep until 9 or 10 AM most days without symptoms (usually don't go to sleep until 1-2 AM). Some mornings they kick about 8-9 AM but that is rare.

I tried to take less strong ones and it didn't work. I tried to take less of it, and still had RLS. I started at 10 mg, but it wasn't quite enough. So, I tried 12.5, then 13.75 - all the while I was prescribed 15. I was so afraid I was needing to increase my dose. After about 10 months of breakthrough and lousy sleep, I finally broke down and took the whole dose. I've been on the same dose now for two years, with the same effects. I wish I would have taken all of it sooner.
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.

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