Finally off Mirapex

[LisztLover]

Finally off the dreaded Dopamine Agonist, Mirapex and I’m suffering like crazy! I don’t even know how much Kratom I’ve taken tonight! I have my ice packs on and they’re not helping. I might as well bite the bullet while I’m sick and suffer through it. I think someone told me about 2 weeks of sheer hell...is this true? Please tell me!

[LotteM]

Oh, I am so sorry! How long since you have taken your last dose of Mirapex? And what was that lowest dose? 0,12g? I saw on your earlier posts that a month ago you were still on 0,25mg. Did you reduce slowly? Maybe you want add in another stap by taking half a pill for a week or so first, and then a quarter before you stop completely?

Otherwise you may try to see it through. However dreadful it is now. Know that many on here have been where you are now.

I trust you know about having your iron checked and raising ferritin to (well over 100) as it may help a little in this difficult stage. Although raising ferritin is a slow process and may not bring relief soon enough.

Do you have magnesium oil? Or epsom salts diluted in half water? It may help a little too. And anything so captivating that it diverts your mind. Although that will most likely in this phase when your want to lick your legs away/loose from your body.

Hang in there, you’ll make it. Thinking about you and sending you strength.

[LisztLover in reply to LotteM]

Thanks so much for your encouraging words LotteM! I took my last dose of 0.25mg last night and slept pretty good, but tonight is a different animal altogether! I know if I’ll just stick with it, it will eventually get better. I’m so tired of this wrecking my quality of life. No one gets it either, including my Doctors. It would not take them long to educate themselves, but nooo, that’s too much to ask! It’s just some twitching...yeah, right!!

[Hidden]

" I don’t even know how much Kratom I’ve taken tonight!" - I think that answers your other post about double vision!!

It can be quite rough and for some it can last longer than others. I cannot remember what way I was other than I stopped dead and things weren't great for several weeks, although I know a lot more now than then about self management and treatment.

Take care with the Kratom, like anything else it can be open to abuse and it is times like the one you are going through that can be a springboard into that.

Have you any other treatment options open to you at present - cannabis can be very useful with the added benefit of reducing the Kratom intake for example.

How long have you been off the Mirapexin and what way did you reduce, if you don't mind me asking?

Good luck and well done for getting off Mirapexin - I found a huge and I mean HUGE increase in functioning after getting off those bloody drugs, I hadn't realised how messed up they were making me.

[LisztLover in reply to Hidden]

No, the Lamictal has been causing double vision among other things...

[Joolsg]

It will take about 10-14 days for the worst of the withdrawal to end. I filmed myself in the 2/3 days after the last dose of dopamine agonist (Ropinirole in my case) and my legs jumped/jerked every 5 seconds. But IT WILL STOP and you will start to feel a lot better.

You’ll need new meds to control the RLS- pregabalin or Gabapentin are the usual next step.

It can take a while to find the right dose and combination of meds to work for you and ensure your serum ferritin is above 100 & that you’re not taking any anti depressants or anti histamines that are triggering the RLS.

Read all you can on this site- loads of us have gone through Augmentation and withdrawal and come through the other side. And all who have will usually say that they will never touch another dopamine agonist.

Stay strong- every day after the last dose will get a little better and soon you’ll be in a much better position with no leg jerking.

[LisztLover in reply to Joolsg]

Thanks so much! I needed to hear that after suffering all night...they’re still bothering me at 6: o’clock this morning...I’m standing lol! I do take Cymbalta in the morning, 30mg and Lithium 900mg at night. I’m transitioning to Lamictal to hopefully get off the Lithium as my kidneys are getting close to failure. Although my last BUN and Cr. was better than the last, drawn last week. I have to take a mood stabilizer, not certain about the antidepressant. I haven’t been able to take a antihistamine since I was a teenager!! I’m on Gabapentin 300mg in the afternoon and 600mg at night.

I got some ferritin in liquid form from work that had never been opened and they were going to toss. Need to have level checked and correct dosage given.

Thanks for letting me vent! It’s so nice to talk to an understanding person!! 🙂🌷🙂

[Joolsg in reply to LisztLover]

[e-mail]

Cymbalta worsens RLS as do a lot of bi polar meds like lithium (they block dopamine receptors) so you should discuss the interaction in detail with your doctor as you will need to balance the two conditions carefully.

Dr Buchfuhrer may be able to suggest suitable anti depressants and bi polar meds which do not make RLS worse.

His email is

[e-mail]

He doesn’t charge and is an RLS expert.

Take care

Jools

[Hidden in reply to LisztLover]

Damn, you are taking an antidepressant that sent my RLS stone mad after 3 days AND an antihistamine which are also well known to cause problems.

Can't say I know how Lithium effects RLS (or doesn't), however I assume that since it interacts or is thought to interact with dopamine and serotonin then it too could have some effect maybe positive since you are coping with the other two drugs.

Might be worth keeping a written record of your Kratom use until things steady off, (maybe even worthwhile doing it full time to keep an eye that dosages don't creep up).

Good advice from Joolsg on contacting Dr B.

good luck.

[LisztLover in reply to Hidden]

What antihistamine am I taking?

[Hidden in reply to LisztLover]

Sorry LisztLover, I misread your post my apologies, (blame my ME ).

[Hidden]

I’m so sorry that you continue to suffer! It will get better — I promise!

[LisztLover in reply to Hidden]

Thanks Jess! I certainly hope so!

[UpandDownallnight]

Hi

Yes sadly that seems to be about right...I suppose the critical factor is are you doing this and trying to function/ go to work etc or are you off sick/ taking some leave?

[LisztLover in reply to UpandDownallnight]

I’ve been sick for about 1 1/2 weeks with an awful respiratory illness that has been making me short of breath after simply walking across a room! They’re now going to make me work 96 hours worth of 12 hour shifts with only 2 non-consecutive days off in between. Starting this Friday I will work 4 12 hour shifts...I can’t do it! It will kill me, but hey, I’m into suicide, right? Sometimes I feel like nothing more than a paycheck...nothing more, nothing less.

[involuntarydancer]

Well done, LisztLover, fantastic work. You can collect your ‘I quit a d/a’ badge together with the acquired knowledge that you could withstand torture if you had to.

I know it’s really hard now but you are so close and will feel fantastic once you have that drug completely washed out of your system.

[LisztLover in reply to involuntarydancer]

What horrible circumstances!! I so dread the evening now when I used to love it! Thanks for your response! I’m waffling some today after experiencing withdrawal symptoms day and night...sometimes the suffering just makes me want to disappear...does that make sense to you?

[involuntarydancer in reply to LisztLover]

Yes; it is not for nothing that so many people describe it as torture. Sleep deprivation is a well recognised form of torture adopted by oppressive regimes throughout history.

I really feel for you, having been through it myself. You will get there and you will be stronger for it. While you may regret having started on a dopamine agonist, you will not regret discontinuing it. You will feel so much better once you get the vestiges of the drug out of your system - more yourself - and you can really take control of the treatment of your rls - rather than the drugs controlling you.

Please keep posting your experiences. It is so important for the continuing education of our community and in particular for our medical advisors. I despair of the number of people who come on here and cavalierly recommend ropinerole or pramipexole because it is 'working for them'. Very often it transpires that they are already suffering needlessly thanks to these drugs and if they are not doing so already, it is virtually certain that they will down the line. And as for the medical professionals (so-called) who recommend them - often in recklessly high doses - just don't get me started. I so wish that I had taken the time to email my sleep consultant (who refused to accept the level of suffering involved) repeatedly through the night on repeated nights over the three months of sleeplessness I endured when I was withdrawing from pramipexole.

Good luck, Liszt lover - I am thinking of you.

[lbrosa]

Stay STRON G LisztLover...it will be worth it when your body is finally rid of the Pram. It took me a couple of weeks and I must admit it was a trip...but I felt remarkably better after I was rid of it! I now take Low-Dose Naltrexone plus 600 mg. of Gabapentin before I go to bed and that pretty much takes care of the RLS and aching legs and I can "usually" sleep 6-7 hours! Prayers for you on this journey...keep us posted! Linda

[LisztLover in reply to lbrosa]

Thank you Linda! I appreciate your response!

[Wonko_TheSane]

Lisztlover, hat off to your courage! You did what I wasn't able to do on my first attempt. After some nights like you described, I didn't dare to fully stop the DA. I didn't have time off and just didn't have the strength to withstand the torture. I did manage to cut my dose down to 1/4 of what I was taking before.

How much kratom did you take? I luckily never had to go over 1 heaped teaspoon. I'm not sure how many games that is precisely, but probably around 3 or 4.

Best of luck to you and stay strong! You've come a long way already, with so little help from your doctor(s)!

[LisztLover in reply to Wonko_TheSane]

I have no idea how much I took that night as I was chasing my withdrawal symptoms without much regard! Last night I took around 2 grams without any negative consequences. I did throw up that morning after not sleeping at all! The things we do for a little relief! Geeze!!!

[Wonko_TheSane in reply to LisztLover]

2 grams really isn't that much, so did you get relief and sleep from it? I notice I tolerate it much much better if I drink lots of anything with it. Juice, water, doesn't matter. I assume it really doesn't dissolve unless you have a lot of fluid with it.

[TheDoDahMan]

Of all the drugs you've listed, kratom is the least of your worries. For several months, I was taking 8 grams per dose, every 8 hours, sometimes every 6 hours. Overdoses of kratom make you throw up, rather than stop breathing, like real opiods do. My 8-gram doses never even made me feel queasy.

[LisztLover in reply to TheDoDahMan]

I did throw up that morning, but luckily, really didn’t feel sick or bad...just threw up! Thanks for your response! I was careful last night in how much Kratom I took...2 to 2.5 grams...not bad!!

[involuntarydancer in reply to LisztLover]

I have taken a lot more than that - up to 7 grams a night - in the past with no ill effects - or none I am aware of 🤞🙂