Getting off pramipexole etc.

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badnights
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Re: Getting off pramipexole etc.

Postby badnights » Fri Sep 09, 2016 7:30 am

Hi legsbestill
I have quickly answered some of your questions, much the same as the others have answered, but maybe a few different perspectives will be useful:
(1) Take a larger dose of oxycontin - if I took more in the evening would I get a longer period of sleep?
- yes, if you took more, you would probably get a better sleep. When you get too high, you may need (as I mentioned to David) a morning dose simply to prevent withdrawal when the evening dose wears off.

(2) See if I can change to methadone - - maybe it would be more long lasting in effect?
- methadone has a much longer half life and other benefits...

(3) Try taking mirapexin intermittently with the oxycontin - Could I see if a lower dose would work now and only take a couple of days at a time to overcome risk of augmentation?
- this is probably your best option. Experiment to find the right schedule and dosing. You could take 0.125 pramipexole plus your oxycontin every day; or you could take pramipexole and oxycontin 5 days out of 7, and on the other 2 days oxycontin with something like pregabalin (you could even eventually try to find a way of going a day or two a week without an opioid, in addition to a day or two without pramipexole). With a low dose of pramipexole, especially if you get a break from it every week or so, you are not likely to augment or experience impulse control problems.

(4) Try the neupro patch - I am VERY reluctant to return to a mono-treatment of a DA - can the patch be used intermittently? Am I likely to experience the same side effects as on mirapexin?
- side effect profiles can be very different, you won't know until you try
- I agree, DA monotherapy would be a bad idea. Neupro might be used in conjunction with an opioid, though

(5) Would it be worth reintroducing Lyrica? Maybe it would have some effect now that the symptoms have settled down somewhat - have to say that I didn't really like Lyrica and I gained weight and felt quite gloomy while on it.
- if you felt gloomy, stay away from it. There is a risk of severe depression, suicidal ideation, & even suicide, from pregabalin and gabapentin.
- no one that I know of with severe WED/RLS uses anti-convulsant monotherapy. It just isn't that effective in controlling the sensations. However, it can be a very effective sleep aid, combating the hyper-alertness of RLS/WED.

(6) My iron levels (?serum ferritin?) were low-ish 36 now up to 44 after months of taking oral iron. Would it be worth getting an iron injection?
- serum means blood. Ferritin is a protein that stores iron in body tissues. The amount of ferritin in the blood relates to the amount of iron stored in your tissues, including your brain. This can be different than the amount of readily available iron circulating in your blood, which is better indicated by the amount of transferrin (another protein, whose main job is to transport iron in the blood).
- You may have to keep taking oral iron for the rest of your life. I take 3 pills of ferrous sulfate that each contain 65 mg of elemental iron daily. This keeps my ferritin over 100. Months of taking roughly a quarter the amount of iron as ferrous gluconate didn't have much effect on my ferritin at all. So - before you look into the infusion route, what kind of iron were you taking, how much, are you still taking it? Vitamin C must be present in the gut for iron to be absorbed, so take each pill with vitamin C (no one could tell me how much so I just take a 500 mg C with every iron pill).
Beth - Wishing you a restful sleep tonight
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badnights
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Re: Getting off pramipexole etc.

Postby badnights » Fri Sep 09, 2016 8:21 am

Hi David

You're in a difficult situation and there's still some rough terrain ahead.

I feel like I am in withdrawal, but it doesn't make any sense to be in withdrawal after skipping one dose. While my legs are fine on my current regimen, and I sleep well, I don't feel well. I am very tired, yawning constantly, sleeping a lot during the day and I have no energy.
Your fatigue can definitely be a side effect of the oxycodone. All opioids can have fatigue as a side effect. More importantly, you can definitely go into withdrawal, not just after missing a dose but before it's even time for your next dose. In fact, at high enough doses, using a "12-hour" formulation, it's inevitable that a person will experience withdrawal if he's only taking the medication at 24-hour intervals. You go into withdrawal when your last dose wears off. The higher the dose, the more extreme the withdrawal. It's a bizarre thing to wrap your head around, and not something my doctor warned me about! but she confirmed my thoughts after the fact. It took me months to realize why I felt like crap every afternoon.

So don't dismiss the withdrawal thing. Pay attention to how your body and mind feel in the mornings. you;ve said "I wake up around 5am to 6am feeling that I really need my next dose of oxycontin". In what way do you need it? Do you feel shaky and nauseous and know that the oxycontin will make that go away? Or is it something more elusive than that? I am still worried that you were on such an extremely high dose for so long; your body might be out of kilter from that and you have to figure out how, if so.

I'm glad you've gone ahead and tried the combination therapy with pramipexole. ( I do it too, despite having augmented on pramipexole and ropinirole. I use hydromorph contin combined with pregabalin 5 days and combined with pramipexole 2 days. For breakthrough symptoms I use another dopamine medication, notorious for causing augmentation (levo-carbidopa/Sinemet), but never take it more than 3 days in a row.) I think you should keep experimenting with how best to use the two medications, and if need be, an anti-convulsant as well, to enable you to reduce your oxycontin dose to something that dosen;t cause withdrawals when it wears off. The anticonvulsant might help extend your sleep past that 5-6 AM wakeup. If you can reduce the oxy dose enough to eliminate the withdrawals, you'll have the added benefit of suddenly being able to eliminate at least one of the daytime doses, reducing your total oxy dose substantially, and re-gaining your energy (and ditching the anti-depressant).

I admit I don't know why you still feel the need for oxycontin after reducing your evening dose by half for three days, so there maybe more going on. And reducing is going to be difficult when you're forced to use 10mg increments. But don't give up yet! I think you're onto something good with the combination therapy idea,
how have the last few days been?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

legsbestill
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Re: Getting off pramipexole etc.

Postby legsbestill » Wed Sep 14, 2016 1:23 pm

Thank you so much to Steve, David, PolarBear and Beth. I was incredibly moved when I logged in and realised that you had each taken the time and effort to post such detailed, considered and helpful replies and I can't tell you how much the various advices and suggestions have assisted as I formulate my post-mirapexin strategy. I have also now received my copy of Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening (2nd Ed) and also Dr. Buchfuhrer's own Clinician's Manual on Restless Legs Syndrome. In addition, I posted on the Southern California patient's question page and received a wonderful detailed lengthy reply from Dr. Buchfuhrer with follow-up replies when I emailed in response. Truly that man is the epitomy of professional generosity and kindness. I am conscious that I am embarking on another lengthy post and apologise for long-windedness. In my defence I would say that I find it very helpful to read the detail of other people's experience and every small piece of information is helpful in one way or another.

I am exceptionally lucky that my General Practitioner (G.P.) is prepared to prescribe OxyContin and I really feel for PolarBear in Northern Ireland - it is the first time I have seen an up-side to the fact that visits to a G.P. in the Republic of Ireland are not state-assisted - we pay for every visit - and accordingly we are perfectly free to move from one G.P. to another. I am also lucky that my symptoms do not appear to be so severe as those of PolarBear or many others on this site - even though, when unchecked by medication, they do make my life close to unbearable with little or no sleep at all. Also, my symptoms appear to respond reasonably well to medication - it's just that what with augmentation and side-effects, I am finding it difficult to find the most effective means of medication. I am also slightly anxious about my G.P. - he is not really interested in increasing his own understanding of the disease and is relying on what I tell him. It is a bit daunting and I am pretty sure he is not all that well-informed. For example when I first suggested Oxycodone, he corrected me and said it was called 'Oxycontin' and went on to suggest that I cut the 10mg pills in half to see if a lower dose would work. OxyContin is a slow release version of Oxycodone and I understand that it is extremely unwise to cut a slow release pill in half.

Since my last post I have increased my dose of OxyContin to 30mg all of which I take in the evenings. This completely resolves my RLS/WED symptoms - hooray! I have encountered problems with 'alerting' - which I would not have identified if Steve had not flagged them - thank you Steve. 'Alerting' is a walk in the park by comparison with suffering restless legs (arms, back, chest etc) and does enable me to enjoy the rather pleasant senstations of 30mg of OxyC. Unfortunately it can mean I am tired in the daytime but again I am prepared to put up with this not to have the RLS at night. However I have started to notice similar problems to those documented by David in his most recent post of tiredness, 'not feeling well', general discomfort/discombobulataion, aches and pains in joints and a nebulous panick-y feeling in the afternoon/evening which I am pretty sure are withdrawal symptoms from the OxyC. I don't like to feel dependant on any substance if it is avoidable and like David I would aspire to a solution that would achieve a daytime in which I can operate with reasonable normality.

In the meantime my sleep consultant has been in touch and has set up a prescription with my pharmacist for neupro patches (rotigatone). She prescribed 2mg but they only had 1mg patches so gave me double quantity of those. Because of the trauma of coming off mirapexin I have been very hesitant and put off starting neupro until yesterday morning when I had work which required me to sit for some time and the legs were troublesome so I decided to try a 1 mg patch and since I had it on I decided not to take the OxyC overnight and see how well the neupro worked. I was very pleased and surprised to find that I had no restlessness in legs (although obviously one night is not a significant trial run) but I was troubled all night with the symptoms documented above which I associate with withdrawal from OxyContin. They are at last starting to abate now in the early afternoon nearly 40 hours after my last dose of OxyContin. Obviously it would be fantastic if 1 mg of rotigatone daily were enough to settle my symptoms but I am pretty sure that is unlikely to last (I was on 1.5mg of mirapexin when I finally stopped taking it). However, to give it the best shot I have decided to try the following system: between 3 and 5 days on neupro at 1 mg and then 2 or 3 days off taking OxyContin instead. I am hoping that breaking up the neupro intake in that way will keep my RLS happy with the lower dose. I am so grateful to Beth for her comments about pregabalin (Lyrica). I really did not feel good when I was on that medicaion and she has given me the confidence to decide to avoid it at least for now. I am hoping that taking OxyContin for only 2 or 3 days together will mean that I will not experience so much unpleasantness when I stop taking it.

More generally, I watched Dr. Earley's webinar presentation on opioids. I am left wondering if Methadone would be preferable to OxyC given that Dr. Early says for RLS/WED treatment one quarter of the amount of Methadone will typically replace equivalent OxyContin. Obviously a lower dose is greatly to be desired and may lead to fewer or less appreciable withdrawal symptoms. I have an appointment with a new neurologist next Monday which in some ways seems unnecessary as I am pretty set on my new plan (thanks in no small part to the feedback I have received here and from Dr. Buchfhurer), but it would be interesting to see what he had to say about Methadone - most likely he will show me the door but - hey - I haven't anything to lose now - except the not inconsiderable fee and am determined to view expenditure on resolving my issues and increasing my understanding at this juncture as a potential long-term saving given the loss of quality of life I have experienced with WED. If he proves particularly helpful I can pass on his details to you, PolarBear, if you are interested. I am not sure whether it would be possible for you to attend a consultant in Dublin?

In view of the various comments about iron I plan to exercise greater diligence in taking my oral iron to make sure it is on an emptly stomach and with vitamin C and see how my ferritin serum levels perform over the next 6 months before I commit to injected iron. I hadn't realised that there were different formulations of iron - thanks Beth - and I think I might change from ferrous fumerate which I am currently taking to see if up-take is improved.

I am so grateful for all the replies. I'm not sure if anyone else is posting about taking a low dose rotigotine (neupro) interspersed with opioids so I will update as I go along - hopefully a little more succinctly!

Rachel

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Re: Getting off pramipexole etc.

Postby legsbestill » Wed Sep 14, 2016 1:29 pm

BtW Beth, I thought your post on page 1 of this thread about what to say to your health provider when seeking assistance up to and including opioids was masterful and I have consulted it on the last two visits to my G.P. on each occasion of which I was seeking an increase in the dose of OxyContin he had previously prescribed. It is ridiculous that a middle-aged professional with no history of drug abuse should feel such a discomfitting mixture of shame, anxiety and embarrasment when looking for a well-documented treatment for a debilitating condition but that is how I felt and your suggestions were really helpful.

Rachel

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Re: Getting off pramipexole etc.

Postby Rustsmith » Wed Sep 14, 2016 3:24 pm

Rachel, thank you so much for the followup. :clap: We really do care about how our members are fairing with the treatment of their RLS. The RLS Foundation has a motto "You are not alone" and it really is true! It is a battle for us, not only against the disease but also against the ignorance shown by so many physicians around the world. It is truly wonderful when we get reports, such as yours, where we have helped improve the life of one of our members AND have succeeded in educating just one (or more) doctors about the issues that we face.

So, thank you very much for getting back to us with your story and I am sure that we all not only look forward to more successful updates to your progress, but also so that others can get an idea of how your combination of Neupro and an opiate is working.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
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Re: Getting off pramipexole etc.

Postby Polar Bear » Wed Sep 14, 2016 5:33 pm

legsbestill - Isn't Dr B wonderful. Indeed on more than one occasion I took a printout of Dr B's email to my GP which happily my GP was willing to note.

I'd be glad to have details of a Dublin specialist - if you found him to be knowledgeable and interested. Always good to have. I'm not sure how any rules/possible limitations in the prescribing of medications would compare between Dublin and us up here but that would be something for the future anyways.

We are delighted that you have found us to be informative and wish you well with your medication plan. :thumbup:
Betty
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legsbestill
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Re: Getting off pramipexole etc.

Postby legsbestill » Wed Sep 14, 2016 8:41 pm

Thanks for your reply PolarBear. Yes, as I say, my family is blown away by how generous, kind and responsive Dr. B was to me individually and is in general. Although the replies I received on this site have been equally generous and affirming.

I haven't been to see the neurologist yet - appointment next Monday and of course he may well turn out to be relatively limited in his knowledge re RLS - I am prepared for this ... but just on off chance he turns out to be good it may be useful to you. Like you, I am not sure how the prescribing of medicines would work cross border but it seems so hard to think of you struggling to get someone to prescribe drugs that could help, especially when your symptoms are so severe.

I am conscious of teaching my grandmother to suck eggs but on this subject, in Dr. B's most recent communication 5 days ago he says:

'a group of doctors (5 USA national RLS experts and me) [modest to a fault on top of all his other recommendations!] are preparing a White Paper (to be published in a major medical journal) discussing the appropriatness, safety and efficacy of using opioids to treat severe rls patients.'

Maybe this would be of assistance for you with your GP when it is published. Also, I am sure you already know that Targin (oxycodone/naloxone) has been granted a licence in the EU for treatment of RLS. Not sure what the significance of this is for G.P.s generally and in particular in post-Brexit Britain but it surely has to be of pesuasive value.

Having said all that, it is now nearly two days since I took my last dose of OxyContin and I continue to experience unpleasant withdrawal symptoms as I type. I would say that it is definitely a drug one would quickly become dependant on in other ways than just for alleviation of RLS. I hate the idea of being on that sort of medication indefinitely. Am hoping my neupro/Oxycontin alternating strategy will help to deal with problems of dependence. I am about to embark on my evening yoga/stretching routine preparatory to going to bed, with some anxiety as to whether 1mg of rotigotine will suffice to quell symptoms a second night in a row. I hope that you get a good night tonight and wake refreshed tomorrow after many symptom-free hours. Thanks again for your reply.

Rachel

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Re: Getting off pramipexole etc.

Postby legsbestill » Wed Sep 14, 2016 9:14 pm

Sorry, Steve, I just saw your reply above PolarBear's. It is so nice to get your positive feedback - it made me feel great. Thank you very much. After I submitted my lengthy post, I was looking through other subjects and came across your awful struggles this summer with depression. I could hardly believe it; you are clearly a very important presence on this site to keep everyone else cheerful and upbeat, I so hope that you are getting to grips with the offending medication and feeling a lot better. What a lovely tribute to your wife that thoughts of her kept you going; I would love to think the same would be true of my husband. I am thinking of you tonight with your very complex medication regime and hoping those pesky drugs are granting physical relief without mental distress.

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Re: Getting off pramipexole etc.

Postby Rustsmith » Wed Sep 14, 2016 11:56 pm

Thanks for the concern legsbestill. Just two days after I spoke with my doctor and we changed my medications, I completely snapped out of the depression. Now, I not only feel great (except for the limited number of occasional RLS breakthroughs), but I even get to enjoy a bit of an emotional pickup each afternoon as my methadone kicks in. I wouldn't quite call it euphoric and it is definitely not something that would cause me to take the drug otherwise, but it makes life truly a joy. I go for walks in the park in front of my flat each afternoon after lunch. There are some days that I feel so good I could almost break out skipping down the path if the sight of a 64 yo doing that wouldn't draw the sort of attention that would attract the men in white jackets. :D
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Polar Bear
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Re: Getting off pramipexole etc.

Postby Polar Bear » Thu Sep 15, 2016 6:51 am

Steve, I can feel your lightness of mood leaping... indeed skipping.... off the page.

I really do want to imagine you as you skip in the park - making people smile.
It's nearly 8am here and I've been up all night, but you've managed to make me smile.

And sure... you'd outrun those 'uns in the white coats.

I'm very happy that you feel so good. :clap:
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Re: Getting off pramipexole etc.

Postby legsbestill » Thu Sep 15, 2016 3:52 pm

Am so happy to read your post Steve and can very much relate to the pleasure methadone brings - if my experience of OxyContin is anything to go by. We might as well take pleasure in the enforced use of these drugs!

Am conversely really sad to hear of your bad night Polar Bear. That is really cruel.

I got a call from the secretary to the consultant neurologist that I thought I was seeing on Monday to say that in fact he was declining to see me and she had sent the appointment by accident. That is two neurologists who have declined to take me on on basis that they don't know enough about the condition. I suppose at least they are honest. I was wondering though, if you went to a G.P. here in Dublin and got the prescription made up in a chemist here - how could anyone challenge that? You would have to pay for the G.P. which is about €60 or €70 and also for the drugs and come back once a month to pick up renewed prescription but maybe it would be worth it to get something stronger than your G.P. will give. At least you would be able to establish if OxyContin was any good for you. My G.P. was very willing (almost too much so) to take my word that RLS experts in U.S.A. would consider OxyContin in my case and I would be very happy to pass on his details by pm if that would be any use to you.

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Re: Getting off pramipexole etc.

Postby ViewsAskew » Fri Sep 16, 2016 7:04 am

[quote="legsbestill"It is ridiculous that a middle-aged professional with no history of drug abuse should feel such a discomfitting mixture of shame, anxiety and embarrasment when looking for a well-documented treatment for a debilitating condition but that is how I felt ...

Rachel[/quote]

I still feel that way after about 12 years using opioids - and with NO issues during that time. I had a dentist assume I was a heroin addict...I had a pharmacist refuse to fill a script...and it goes on.

On another note, I think you mentioned the concern of physical dependence. Almost everything we take comes with that - some worse that others. BUT - you can potentially take two things alternately and then you won't have that happen. For example, I currently take an opioid part of the time and a dopamine agonists (pramipexole) part of the time. I don't augment because I don't take it long enough without a break, nor do I become strongly dependent on the opioid. So, another option for you. It's a bit harder to do that with rotigotine, though, because it takes 3-4 days for it to build up completely in your body. You could, I suppose, take it for 2-3 weeks and then take an opioid for a week.
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.

badnights
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Re: Getting off pramipexole etc.

Postby badnights » Fri Sep 16, 2016 8:13 am

BtW Beth, I thought your post on page 1 of this thread about what to say to your health provider when seeking assistance up to and including opioids was masterful and I have consulted it on the last two visits to my G.P. on each occasion of which I was seeking an increase in the dose of OxyContin he had previously prescribed. It is ridiculous that a middle-aged professional with no history of drug abuse should feel such a discomfitting mixture of shame, anxiety and embarrasment when looking for a well-documented treatment for a debilitating condition but that is how I felt and your suggestions were really helpful.
I am so happy I've been able to help. I know exactly how you feel, but you put it in words much better than I could have - shame, anxiety and embarrassment indeed! and a bit of anger that we're somehow made to feel that way.
I posted on the Southern California patient's question page and received a wonderful detailed lengthy reply from Dr. Buchfuhrer with follow-up replies when I emailed in response. Truly that man is the epitomy of professional generosity and kindness.
There are many of us here who feel the same way about him. He spends a staggering amount of his personal time helping people like us, and I will forever be grateful for that. Forever.

Ann has already said this, but I like your idea for alternating the oxy and Neupro. I don't know if 3 days is short enough to avoid opioid withdarawl but if it is, you have it made, and hopefully can enjoy the best of both worlds. However, if the alternation doesn't work, a daily low dose of each would be a reasonable alternative, and might avoid the worst of the consequesnce of long-term higher doses.

(Another nasty side effect of long-term opioid use is lowered levels of the sex hormones, testosterone in particular. This is a problem in women as well as men, and the most noticeable and distressing effect for me was an almost-total inability to orgasm, for about 5 years!!! and I wondered if it was all in my head, but since I managed to drop my dose, that ability returned, like magic.)

It would also be wise to not aim for total relief. Whenever our symptoms are completely resolved, it seems they will ramp up a bit, and to chase after complete resolution becomes a losing battle of increasing medication doses. This is something Dr B has noticed in his clinical practice, and a number of us in our personal lives.
am determined to view expenditure on resolving my issues and increasing my understanding at this juncture as a potential long-term saving given the loss of quality of life I have experienced with WED
perfect attitude.
Beth - Wishing you a restful sleep tonight
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Re: Getting off pramipexole etc.

Postby Polar Bear » Fri Sep 16, 2016 8:40 am

legsbestill - thanks for your suggestion regarding using a GP and Pharmacist in Dublin.

I guess it's always an option. However, just at present I prefer that my local GP is aware of my medication regime.

When it gets to the stage of needing a medication review I will be well armed with information about how to proceed from Dr B, the Foundation Brochures, and the Dr B's Management of RLS Book. My GP, in the earlier days, had an eyebrow lift at some of the stronger medications indicated for the treatment of RLS. Nowadays I think he has been treating me long enough to trust me in the medication management, I don't ask for extra, I haven't asked for anything stronger. If that time comes I hope he will appreciate that I have been as cooperative as he has been helpful and willing to learn.

Rather frustrating that two neurologists have decided that they have nothing to offer you.

On a happier note, last night I slept for 7 hours solid, yes it was a medicated sleep, i.e. double dose sleeping pill. I can recall my husband turning me onto my side - he said 'the walls were rattling' :)
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

legsbestill
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Re: Getting off pramipexole etc.

Postby legsbestill » Fri Sep 16, 2016 12:56 pm

This Board is a life-saver and the positive contribution you mods make to helping me cannot be overstated. It is like returning to a calm supported place just logging in here.

All my plans are in disarray: I took my last dose of OxyContin on Monday, planning, as I have said, to alternate with my Neupro patch which I started on Tues a.m. Started experiencing withdrawal symptoms on Tues and was surprised at how significant they were - sweats, aches and pains, a sort of compression in the chest and an anxiety similar to how I imagine a claustrophobic would feel if confined to a small space. They disturbed my sleep on Tues and Wed but did manage some sleep and had only very light RLS even though only 1mg neupro. Last night however, not unexpectedly, legs put in a protest at this low dose and acted up with a vengence so I applied a second patch but of course that takes a while to kick in. Eventually at 4am after no sleep due to combined RLS and withdrawal symptoms I cracked and took 15mg OxyContin and was rewarded with 5.5 hours delicious sleep.

Unhappy with the idea of being on a drug that causes such an immediate sense of dependency and in spite of lingering OxyContin happiness, I spent the morning googling withdrawal from OxyContin and torturing myself with the awful stories that are out there. Then I logged in here to find your lovely, supportive comments and calm words of wisdom. I think I will have to let go of my plan to alternate - I don't think it will work so well with neupro anyway; as Ann points out it needs a few days to build up - I will park that for now while keeping it as an option for down the line, possibly using mirapexin (pramipexole) instead of neupro. As neupro is what I currently have, I think I am going to use it - not going above 2 mg and top up with OxyContin as needed and see how I get along with that. All of your comments (and the feedback I got from Dr. B) have made me feel more relaxed and comfortable with that decision. The motivation to keep OxyC to an absolute minimum is augmented (dare I use that word in its more usual context on this site?) by the side effect you mention Beth which I had noticed but had thought it was more due to lack of sleep. Also very interested in 'don't pursue total relief' policy - it entirely accords with my own experience now I think of it. My RLS seems to have a personality of it's own - merely residing in my body as a form of possession and absolutely determined to find ways to make my life miserable.

I feel so egocentric and slightly embarrassed posting every detail of my attempts and plans but it is so helpful even just getting them out of my head and into the ether.

Am so happy to hear of your good night PolarBear and laughed out loud at your rattling walls.


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