Withdrawals: Does anyone know how long... - Restless Legs Syn...

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Withdrawals

Sarasneakers profile image
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Does anyone know how long these pramipexole withdrawals will last? I've just done two nights without and I'm miserable. Thanks for any replies x

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Sarasneakers profile image
Sarasneakers
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31 Replies

Sarasneakers have you been given any strong pain meds to help with the withdrawals.? Dopamine withdrawals vary from person to person on how long it takes to settle down. Could be just a few weeks to a few months. The higher the dosage someone takes it seems to take longer but having said that everyone is different. A pain med would help but you will still have some withdrawals to cope with. Thats why i now always tell people NOT to keep upping their dopamine dosage as getting off it when you have to, is pretty hellish.

Sarasneakers profile image
Sarasneakers in reply to

I've kept to 0.88 pramipexole because I previously titrated ropinirole and it was hell. I've done two nights with no pramipexole using 150mg pregablin and 30mg codeine the first night and 75mg pregablin and 30mg codeine last night. I fainted yesterday morning and felt dizzy all day yesterday. Wondering if I should take a quarter of a pramipexole tonight

in reply to Sarasneakers

So you have been only taking one 0.088 pramipexole. ? If so, then it shouldnt take long to get through the withdrawals. The pregabalin maybe is making you dizzy and made you faint. Dizzy being a side effect from it, the 150mg does sound like a high dose of that med. Taking a 1/4 of pramipexole might help by weaning off it rather than stopping altogether. You have to judge that yourself. Most doctors would give Tramadol or low dose of morphine to help with the withdrawals. I have stopped pramipexole before when only taking one pill, it took a few days to feel better, i think my 5th night was the worse then it started to settle. But, as i said we are all different.

Sarasneakers profile image
Sarasneakers in reply to

Thank you so much for giving me some hope. I've done two nights and knowing that it will get better is all I need to keep going. I think I'm going to have to take a quarter of a tablet tonight just to be able to function tomorrow because I'm a single mum with a 6 year old and bless her she needs me to be on form! I'll see how bad it is tonight when I wake up. Thank you so much for replying, it's difficult when there's absolutely no guidance anywhere x

in reply to

I did it one time by the tiny bite method to quit. I took a tiny bite of the pill less each week. I had to stop for various reasons several times. Omgosh, it was NEVER good without a heavy duty pain killer. RLS always started getting worse as I went down.

Then if you take that pain killer for even 10 days - you will have a hard time settling down to just your medicine for RLS - at least for some people that I have asked. Heavy pain killers tend to wipe it right out with a little dose of RLS medicine.

nightdancer profile image
nightdancer in reply to Sarasneakers

hang in there. There is nothing easy about getting off those dopamine meds, They compare it to withdrawal from cocaine, so like Elisse said, take the pain meds or whatever you have, but do not give in and go back to the Pramipexole. It takes a strong person, but you were on a low dose, so just stick with it, I know it can be total hell from talking to many other people.

MplsHope profile image
MplsHope

Dear sarasneakers- I was on .50 mg of pramapexole for 15 years for RLS. I am off of it entirely now but it took 6 months of horrific experimenting with every prescription available. What finally worked for me was CBD oil from Cannabis but with minute THC levels - NOT the kind that causes a psychidellic high but rather industrial hemp. I found a company in Colorado called RxCBD (RxCBD.co) that makes an edible version- a Gingersnaps cookie fortified with high levels of CBD oil but less than 3% THC. I had to experiment with the doses until I found what worked.....but it worked!! FYI- I am 5'4" 125 pounds, 47 years old.

My heart goes out to you. I have an 8 year old daughter -- and I felt so terribly guilty when I couldn't function enough to simply be there for her. Be gentle with yourself, are there people who can help you while you go through this. If nothing else, know that you aren't alone in this. This website has been an incredible resource for me. Hang in there! There's hope.

Sarasneakers profile image
Sarasneakers

Thank you. Would you recommend smoking pot? x

MplsHope profile image
MplsHope in reply to Sarasneakers

No- the THC in pot/ marijuana can cause hallucinations & anxiety. I don't have any personal experience trying pot specifically for RLS symptoms. I'm afraid that the THC would exasterbate the tickling sensation & anxiety. What I used was a hemp oil derived from cannabis. The psychedelic producing THC is removed in a medical lab that is heavily regulated so that you know exactly what you are putting into your body. What I used was developed strictly for health benefits and not for recreation use whatsoever. It's called Delta-9 Tetrahydrocannabinol (THC) concentration that does not exceed 3/10%. It's not marijuana/ pot though u find THC in that as well.

MplsHope profile image
MplsHope in reply to MplsHope

Below is a link to a good resource that explains it better that I can. Also, RxCBD.co is the company the produces the product I am using. You can email your symptoms & questions. They are familiar w RLS & pramapexole withdrawels.

CBD-Rich Hemp Oil: Cannabis Medicine is Back: Steven Leonard-Johnson, Tina Rappaport: 9781499533354: Amazon.com: Books

nightdancer profile image
nightdancer in reply to MplsHope

depends on the person and the strain of MJ you are using. Need to mention that we from the US can discuss this, but it is illegal in the UK.

Sarasneakers profile image
Sarasneakers

Well I've completed night three without any pramipexole and also without any sleep. It's 4:45am now and I've given up trying. I feel like I've got insomnia as well as rls withdrawals symptoms. How depressing x

Pete-1 profile image
Pete-1

Are you taking any other medication to help and how long have you been slowly taking less and less?

I suspect it could be a mater of a week or two rather than days.

When i tried to stop Pramipexole I lasted about 4 days before being glad to start again. It wasn't an objective to stop permanently anyway.

Sarasneakers profile image
Sarasneakers

My objective is to stop permanently. I've done 3 nights without by using codeine pregablin but ita not great

nightdancer profile image
nightdancer in reply to Sarasneakers

It is going to take more than days, weeks or months, but worth it in the end, just keep telling that to yourself.

Graffamj profile image
Graffamj

Sarsneakers, as Elisse has suggested, everyone is different getting off a dopamine agonist. I was on 9mg of Requip a day and when I stopped cold turkey, I didn't have any acute withdrawal symptoms, but it's now been 11.5 months and I have awful insomnia. Nevertheless, at least I'm no longer the scary version of myself that I was while on Requip. With you having been on a relatively low dose and you're already past 3 nights, I would recommend sticking with it and being off the stuff completely!

Best of luck!

Jerry

Sarasneakers profile image
Sarasneakers

Thank you Jerry, I don't feel as alone with the support of people on here and I've never been able to manage one night before so no going back now x

Pete-1 profile image
Pete-1

I once went for I think it was 4 days totally without any Pramipexole after slowly reducing the dose over about 3 or 4 weeks. At this point there were no signs of the misery subsiding into minor annoyance. You may have to allow for withdrawal symptoms to remain for some time more like weeks. Who knows? Maybe you could get some assistance from your GP.

Sarasneakers profile image
Sarasneakers

Tonight is my one week anniversary of being dopamine agonist free! In 4 years I never thought I'd reach this point. The nights are still unpleasant but not as miserable as they were and I'm just so happy to be free of those horrible drugs. Thank you for your support and advice xxx

Sarasneakers, so happy to hear that you doing well after a week off the dopamine med. :)

Sarasneakers profile image
Sarasneakers

As I suspected the rls isn't as bad as the symptoms with augmentation because I'm now on iron and levothyroxine. I wish they'd tried that years ago instead of putting me on ropinirole and pramipexole that I struggled to get off of x

in reply to Sarasneakers

Hi Sara. Glad to hear you are doing well. Have heard from many others that iron is like a godsend, even if they are not low on it. Are you taking it at night on an empty stomach? I have also heard that is the way to go in terms of taking it. I agree too about the dopamine agonists, they caused your RLS to be worse by depleting your dopamine receptors. Now you are doing just the opposite and restoring your receptors with the iron. Never again go down that dark road.

Sarasneakers profile image
Sarasneakers in reply to

I take it twice a day with vitamin c but during the height of the withdrawals I was taking one at 3am!

They got it all so wrong for me. I have always been low on iron and low normal on thyroid I felt sure they could be related

in reply to Sarasneakers

I bet within an hour of that 3am iron you were right back to sleep. Someone on here recommended a bio-available form of iron and that vitamin c isn't even necessary with it. The other strange thing with iron is that people feel great when they are on it, they get their stores way up, they stop and the RLS comes back??? I would rather keep my stores low end of normal and take a little iron every night if that really is the case.

Sarasneakers profile image
Sarasneakers in reply to

I've been on iron for the past 20 years and my gp took me off. I had to fight for recognition that my level was considered low normal for the population but staggeringly low for the rls population. They said that I should come off it again I'm a month or two without even testing me. They do not know what they're talking about

in reply to Sarasneakers

For people with RLS, iron isn't a supplement it's a drug. Our brains have little to none of it and can't call it up from our stores even when they are robust. So I truly believe the way to go is to always keep it in your arsenal when you have an attack. You should feel fine within an hour of taking it. If you want a break from the iron you can try some potassium in water when you have an attack.

Sarasneakers profile image
Sarasneakers in reply to

Absolutely completely agree. Without a doubt x

in reply to Sarasneakers

And yes, low thyroid is a known trigger. Spread the word, don't let others suffer the way you did.

Sarasneakers profile image
Sarasneakers in reply to

If I had known that dopamine agonists would have messed me up so much and been so hard to stop I never would have taken them. Now my gp makes me feel like an attention seeker. I've pushed for this and I'm satisfied I did the right thing x

in reply to Sarasneakers

Life is strange in that way. You HAD to go through that ordeal. It was your test in this life. You passed. You are out of the darkness of the cave now and can show others the light. I can almost guarantee that RLS will never darken your doorstep again.

Sarasneakers profile image
Sarasneakers

Also I have eliminated sugar wheat chocolate etc it has all helped

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