Going cold turkey on mirapax

[Krickets]

Took my last mirapax last night , I’m using a homemade rub with cbd and thc, I have no idea what I’m doing but ready to try whatever it takes to get off this med!! Any ideas would be much appreciated!! I’m 57 female and been on rls meds for over 25 years now. I have Hemochromatosis which is way to much iron in my blood so it doesn’t have anything to do with low iron. Thanks

[Hidden]

Hi Krickets - its not advised to go cold turkey with a DA like Mirapex - slowly slowly catchy monkey.

Have you a replacement drug - you need one normally to perform 2 actions - 1) help the withdrawal from the DA and, 2) replace the Mirapex with something that is going to work on RLS.

Not sure what the cannabis rub is - I'd imagine for it to work well you'd want to add some DMSO. Me? I'd smoke it - a quick and easy (with a little practice) to titrate the dose to the correct level.

Look into Yoga stretches (free 'classes' on Youtube) I found them helpful along with HOT showers and baths (oil/gas bill might take a hit but damn it does help).

DISTRACTION and plenty of it. We sometimes underestimate the effects of distraction. Sometimes I can barely get 8-10 hours out fo my supposedly 12 hour drugs, however IF I manage to keep myself well distracted (moving about doing things as opposed to sitting doing something), I can manage to distract myself until I am next due a dose (this is a fantastic opportunity to ask your significant other for loads of sex, what better distraction ).

Not really RLS help here but Vit D deficiency can cause a lot of problems and it is very common in places that don't have oodles of sun or in people who don't get out a lot. While not directly effecting RLS it effects many other areas that may prevent you keeping your mind and body away from RLS symptoms.

Good luck.

[Krickets in reply to Hidden]

Thank you for the response, I’m very overwhelmed by all this! I had absolutely no idea that these drugs were so complicated! My mind is Just whirling and I’m more confused, lol I had no idea that this med would do this to me! I do get b-12 injections monthly and started taking my prescription vitamin d3 , I don’t know what dmso is? I have someone in Colorado checking to see what would help in the way of cbd which I know nothing about, if there is something that you think would help in that way could you give me a name of it? It’s not legal in Nebraska yet so I have to get it in Colorado and do I wean off mirapax in your opinion? I also take Zoloft and vyvance and zanex , I’m ready to just flush it all! I haven’t been able to have a orgasam for years by the way ! Lol

[Hidden in reply to Krickets]

It can be a steep learning curve - I've been reading for years and am learning regularly.

I am sorry I can't advise on the dopamine withdrawal - when I was on it my GP, knowing as much as me, stopped me cold turkey, (it was during an awful time and I don't even know if I felt any worse/better. On the bright side there are those here who can give you all the info you need - if you don't get an answer on this thread, start another.

No orgasm in how long? Nope that is not right and I seriously think it needs sorting - a good 'ride' and orgasm can do wonders for the body, mind and soul. Zoloft could be the culprit there AND could be exacerbating the RLS. Cards on the table time - I don't agree with antidepressants, the research on them is tainted, they are not as good as made out, have loads of side-effects AND WORSE OF ALL they generally don't cure the problem at best they are a sticking plaster solution.

They have their place as a short term drug used while waiting for or accompanying therapy. If you can get off the Zoloft safely I would advise that too. I know depression and anxiety can be crippling - I've been there since I've gotten unwell and lost my career along with only being able to function at a fraction of my old rate.

There is LOADS of info on here along with very caring and knowledgeable people this is a time for Mathew 7-7 - seek and ye shall find!!! Or on here ask and you shall receive.

DMSO is used to carry medicines through the skin easier, apparently DMSO aided chemotherapy means less drugs are used with the DMSO aid a big absorption through the skin. I just thought if you were using cannabis oil on your skin the DMSO might make it work better, although stick it in a water pipe, light it and suck deep - those legs will soon start to quiet!

[Hidden]

As raffs has said just stopping any dopamine med is not a good idea, the withdrawals can be horrendous, you should wean down slowly from your Mirapex.

[involuntarydancer]

Great response by Raffs. I would second everything he says. It is considered optimal to titrate slowly off dopamine agonists - although rls experts in the US such as Dr. Buchfuhrer and Dr. Earley do suggest that once the really bad symptoms set in there is not much point in prolonging the agony and at that point discontinuation is justified unless the dose is still quite high.

There are quite a few posts about the benefits of orgasm (specifically on rls in addition to the general desirability) so even in this regard Raffs is correct.

Just to enlarge on his suggestions re distraction (sometimes significant others just run out of steam) - I find a really distracting activity such as a computer game surprisingly effective in dealing with rls symptoms. 20 minutes of an absorbing game online can give me up to two hours of symptom free sleep. Reading, watching tv or paper puzzles are not sufficiently distracting however - it has to be something super absorbing.

I also agree about yoga - 20 minutes of yoga stretches can also afford about 2 hours of sleep.

Magnesium, particularly applied as a rub is also helpful, as are support tights/stockings.

Finally, I would give caffeine a shout, Believe it or not there is scientific evidence that caffeine can help rls symptoms. There is also much anecdotal support on this site. It works on the adenosine receptors which are implicated in rls.

However, it is likely that none of these tips will afford much relief during the initial hellish phase of dopamine agonist withdrawal. It is important not to get too sleep deprived as that can also exacerbate rls symptoms so that a vicious cycle occurs. For this reason, I would suggest that it is important to have access to an opioid or kratom to allow sleep at least from time to time while withdrawing from a dopamine agonist. Nothing else will deal with the greatly exacerbated symptoms during the early period following discontinuation of pramipexole.

Good luck.

[Dogdoo in reply to involuntarydancer]

From my understanding, orgasm produces 'chemicals' ( idk the technical term) that work on opiod receptors.

I believe it is similar to how morphine works on the brain.

So, it makes sense to me that orgasm woukd help quiet rls in the same way oxycodone and methadone do.

Gotta love biology and the human body (sans rls and other dysfunction).

[Hidden in reply to Dogdoo]

It's endorphins!

[1234kids in reply to involuntarydancer]

So coffee can help RLS?

[involuntarydancer in reply to 1234kids]

Yes. Try putting it on the search bar (or just try it). You should find a few threads by people who notice their symptoms settle after a cup of coffee.

[DisneS in reply to involuntarydancer]

I find a definite improvement after a cup of coffee and especially with swirls of squirty cream on the top (to increase dopamine!!)

[Krickets]

My dr wants me to start requip? I was on that years ago and had bad side effects but she wants me to try it again. I’m so frustrated

[Hidden in reply to Krickets]

Let them want on! It is not advised to go from one DA to another. Damn it - it is like saying that Carlesberg is causing liver cirrhosis so better start drinking Fosters (Coors and Budwiser for our American kin ).

You need to withdraw slowly off the DA then titrate up another replacement drug, (unless you can manage without). Please make sure and go armed with more knowledge before your Dr does more harm. have a wee read at this:

ncbi.nlm.nih.gov/pmc/articl...

[Krickets in reply to Hidden]

So I called my Dr yesterday they still insist I give the requip time to work in the meantime I was sicker than a dog! Rls started in at 11 am severe headache brain zaps nausea and my whole body was trembling, I went to urgent care for a second opinion only to be told he doesn’t know much about rls but he upped my zanex for five days , I went to the pharmacy and the pharmacist came out to talk to me , as I was crying my eyes out she went and searched the drugs and told me to take a small dose of pramipexal along with the requip and titrations myself off the pramapexal . I slept great last nigh but still have some withdraws. The dr did offer to refer me to Mayo Clinic, should I go ahead and take the referral or wait and see if this works? Thank you all for all your feedback!

[LotteM in reply to Krickets]

Take the referral. Which Mayo Clinic? Meanwhile, get yourself informed thoroughly about augmentation and its treatment and non-DA treatments for RLS (alpha2delta ligands and opioids). Bring copies of the relevant papers to the appointment. And stand your ground!

Also, check the rls.org website for doctors knowledgeable of RLS. You are in the US, right?

[Krickets in reply to LotteM]

The Mayo in Minnesota?

[LotteM in reply to Krickets]

I did a web search. Make sure you get to see Michael Silber there. He publishes often about RLS and should be able to treat you according to the latest insights.

[Krickets in reply to LotteM]

Ok thank you

[LotteM in reply to LotteM]

Still, make sure you know as much as you need to know and more too, so you can have an equal discussion about your situation.

[Krickets in reply to LotteM]

Ok I’m trying but my brain is so screwed up! I’ll do my best

[LotteM in reply to Krickets]

Good! And don’t hesitate to ask for help and pointers. We can always summarize and copy in links again.

[Krickets in reply to LotteM]

Everything is in the works , I just hope the waiting time for Mayo is not very long! Hopefully my insurance will pay. For it!

[involuntarydancer in reply to Krickets]

I despair. In your shoes I would not take requip - or any other dopamine agonist.

[Casinogoer]

I am sorry, I just got your message. You never go cold turkey off of your meds like that. It is very dangerous. I just went off of one of my meds , Klonapin, over a 5 week period and it was not easy. Mirapex is not easy either. What MG are you on? Many doctors don't know what to do about these drugs. What doctor is telling you to go on Requip?

[Krickets in reply to Casinogoer]

My primary dr is wanting to put me back on it , we live in a small town with one clinic and pretty much screwed if we aren’t compliant with what they say. I am searching for a specialist but they are hard to find , and getting a appt is months out! I’m so ready to find a place where they sell mj and or cbd oil. My head is so screwed up I can’t think straight , this is just insane!

[Dogdoo in reply to Krickets]

I have heard folks on here that have emailed Drs Buchfurer or Winkleman and they have been helpful with suggestions and resources you can bring to your docs.

I'm sure someone here can give you more details.

I was on requip (for a short time ) and it didnt work and my dr switched me to mirapex.

I was resistant but he refused to prescribe methadone.

I take the lowest dose and its been a month now.

Surprisingly, i have had zero rls since day 1.

I'm hoping it works forever at the same dose.

I will not ever increase my dose.

If it stops working, I'll pay out of pocket to go into Boston to see Dr Winkleman.

[Casinogoer in reply to Casinogoer]

What does of Mirapex are you taking?

[Krickets]

I’m on .5

[involuntarydancer in reply to Krickets]

.5mg is quite a high dose. I think it is twice the recommended daily max. I would definitely reconsider stopping that dose cold turkey if I were in your shoes. I would not go cold turkey from anything higher than 0.125mg. In fact I would probably even stay a few days on half that dose before dropping it completely. If you drop suddenly from a high dose there is a risk of DAWS (dopamine agonist withdrawal syndrome) which is not something you want.

I know it’s not what you want to hear - your desire to get off this drug is understandable and laudable but it would be much safer to reduce gradually before discontinuing.

[Krickets]

The med they switched it to is ropinirole, I figure screw it I will give it a shot!? I’m so frustrated, if I don’t try it then the dr won’t even try to help me.

[Hidden]

Hello Krickets, I see you've had a lot of good responses and advice.

I thought I'd just chip in with some my own thoughts.

I may have missed it somewhere, but I don't see your reason for weaning off Pramipexole. The usual reasons are because it's stopped working or augmentation.

In that case, I think most RLS sufferers who've experienced these would say, stop taking the Dopamine Agonist (DA). ANY DA.

These drugs go under different "brand" names in different countries and even in the same country. You always need to !ook up the internationally "approved" or "generic" name which is the name of the actual chemical. Mirapex is Pramipexole. It's a DA.

Other DAs include Ropinirole and Rotigotine. Requip is one brand name for Ropinirole. They're all DAs.

I think most folk on here would agree, if you're having problems with one DA, don't switch to another.

Something else about your case. Again I may have missed it, but I note it appears nobody's commented on Zoloft - generic name Sertraline a Selective Serotonin Reuptake Inhibitor. SSRIs are known to exacerbate RLS, so if the Pramipexole's not working, (the brake) it's because you're taking Sertraline at the same time, (the accelerator).

Vyvanse, generic name Lisdexamfetamine. This is also a possible complication as this drug is a stimulant and raises dopamine and norepinehrine levels. I'm not clear whether thats good or bad, but if you're taking something which boosts dopamine AND a dopamine agonist, it could potentially cause augmentation.

The good news is that Xanax, generic name Alprazolam is a benzodiazepine and is OK for RLS. I'm not so sure that it goes too well in conjunction with a stimulant however, (brake and accelerator).

It may be that you need to review ALL your medication with a knowledgeable physician , NOT just the DA.

I hope this helps

[Ert223]

They do have a drug LDN it is a low dose of another drug that gets folks off of opiods.

It partially blocks the opiod receptors then the endorfens build up break through and

give relief. I cant take it because they have me on 60 mgs of norco...and if I go on it..it blocks

the norco then I am like a one legged chicken hopping across the floor. I wish my

doctor or I knew about the LDN before he prescribed the Norco. I use Bumble Bee

Kratom that will take care of the pain...according to researcher that has been studying it

for like 20 years states getting off of Kratom is like getting off of coffee..The problem is getting a doctor to prescribe the LDN...got it off the internet. I use NIR light 800-900 nm

red box or joove. When the norco quits working stand about 1 foot away turn it on for

ten minutes and it works for me about 90 percent of the time. and am on the benzos.

As soon as i think I got it all figured everything goes to hell. Good Luck.

[Lapsedrunner]

As a bit of an aside, re lack of orgasm, presuming it wasn’t always a problem?

Have you considered talking to your dr about HRT? Lack of sexual response is often hormone related.

I found that coming off DAs affected me massively, a bit of time and adding testosterone to my HRT mix have sorted things 😉

[Krickets in reply to Lapsedrunner]

I had a complete hysterectomy at age 31 was on progesterone? For several years , now I’m 57 and Gynecologist isn’t worried about it.

[Lapsedrunner in reply to Krickets]

You should have been on comprehensive HRT for a surgical menopause.

If you find it distressing then your gynaecologist should be worried!

Where are you?

[Krickets]

Nebraska, I guess with everything that’s happening between all my problems it seemed that was the least of my problems.

[Lapsedrunner in reply to Krickets]

Only it’s not, is it?! There’s a UK website called menopausematters that you might find interesting.

Having effectively your menopause so young can have a big impact on your bone health and your cardiovascular system (lots of people think it’s only about hot flushes and vaginal dryness!)

HRT was given a bad press, that’s thankfully changing certainly here in the UK now.

[Krickets]

I will definitely check into it! Thank you!

[Lapsedrunner in reply to Krickets]

You’re welcome!