How many nights should I try going wi... - Restless Legs Syn...

Restless Legs Syndrome

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How many nights should I try going without tablets?

Bkc1777
Bkc1777

Hi again,

I wanted to try sleeping without using pramipexole and see if I can cope. My first night was terrible but it will take time for my body to get used to not having a tablet,won't it? How many nights does it take to wash out from my system?

Thanks in advance.

B.

40 Replies
oldestnewest

It really depends on what dose you're on to start with.

If you are on the lowest .088mg then just a few nights would wash it out of your system.

Higher doses will take longer and will probably need some help- see loads of posts on this topic.

Good luck.

Might be worth talking with Nick the Turk:

healthunlocked.com/rlsuk/po...

As madlegs says, look at other posts. It will be difficult without meds like tramadol/codeine as you will not get much sleep and the RLS will be 100% worse as body withdraws.

Hopefully you will manage but look at the posts on Augmentation and withdrawal,

Good luck,

Jools

According to Dr Buchfuhrer it takes at least 14 days and sometimes a couple of months to get to to pre Dopamine Agonists levels (you must also allowfor natural progression especially if you have been on the med for more than a couple of years )

Pippins2

Thank you all for the replies. I was on a 0.88mg for about 3 weeks. Then last night, i just stopped and had a terrible night. Fell asleep around 4am! Luckily not working due to school holidays so I can cope with the sleepless night. I have just started taking feroglobin and magnesium tablets. Using decaff stuff so hoping that makes a difference! I was nearly giving up last night but I thought I lasted that long I can't give in :)

Don't look forward to bed time but I will try to beat this devil! :))

Thanks

Hidden
Hidden in reply to Bkc1777

Also, if you do decide to have an emergency med handy, such as codeine, I suggest that the first thing you take in the evening before bed is the iron. If after one hour you still have any symptoms of RLS left, then of course, take the emergency med. In terms of RLS, I truly believe that pain meds and Lyrica are the last act of a desperate person. Would you give pain meds to someone with Anemia or would you give them iron first? Would you give pain meds to someone with Type I diabetes or would you try insulin first? I believe the same should be true with RLS - a highly bioavailable form of iron FIRST. Might you have to take iron every night...maybe? Our brains just don't seem to be able to store iron within it's cells the way the non-RLS world does. And I guess the same is true for Type I Diabetes - they have to take insulin everyday because their pancreas just doesn't produce it the way the rest of the world does.

On a brighter note, RLS is more like a cross between Type I and Type II diabetes because in a lot of cases people are able to control their RLS with other supplements (such as b12, methylfolate or magnesium) and/or diet alone. And that is true for people with Type II diabetes wherein they can often control their blood sugar levels via diet and exercise. Remember, iron first, pain meds last.

Alyson66
Alyson66 in reply to Hidden

Er no, sorry but after 36+ of severe rls you would take anything

Hidden
Hidden in reply to Alyson66

Too long to suffer. Do you know that people with primary RLS have "anemic" brains? What do you have to lose by trying a very bioavailable form of iron (such as ferrous bisglycinate) on an empty stomach about an hour before bed. Only works for one night. If you tried iron but took it during the day, or even if you took it at night, but it was ferrous sulfate say then you didn't give the iron a fair chance.

I use Solgar's Gentle Iron - 25mg capsules. You have nothing to lose but your symptoms of RLS. If you like the iron then after a few nights you have to let your doctor know what you are doing so that he can monitor your iron stores.

Muchas suerte.

Hidden
Hidden

Hi Bkc, I find it helpful to take the iron on an empty stomach before bed. Your formula of iron contains ferrous fumarate (17mg) which I'm sure is fine but I use ferrous bisglycinate and believe it is the most bioavailable of the non-heme (plant based) irons. I also have a heme (animal based) iron tablet in the house.

Anyways, there is a certain percentage of people who take iron (especially the bisglycinate) and will get immediate and complete relief from RLS for one night. And then there are others who only get relief once their iron stores are high. And for a few it seems to not make a difference. My iron stores are high, over 100, yet I still get RLS, though not every night. And when I do get an attack the bisglycinate takes care of it even though clearly my bodily iron stores are quite healthy. We with RLS have anemic brains, not really bodies, so I feel that I am literally sneaking my brain some iron at night when it needs it most because the unbound iron in our bloodstream drops at night, as well as dopamine...supposedly.

Your kind of iron also contains b12 and folic acid (wish it was in the form of methylfolate) and recently one man posted here about how b12 and folic acid affords him complete relief from the RLS.

You can put the name Bganim1947 in the search box and read about her story withdrawing from the DAs. Good luck, you will get there one way or the other.

Hidden
Hidden in reply to Hidden

My point with the heme versus the non-heme iron is that for people who don't get relief with the non-heme iron they might want to try heme iron since it is absorbed in a completely different way in the GI tract and of course, in general, historically speaking, we humans probably got most of our iron from red meat.

As you have only been on the lowest dose for 3 weeks it may not be too bad to withdraw after first couple of nights, good luck c

Hidden
Hidden in reply to Pippins2

No, I think Bkc has been on a DA for a year, but increased it in the last month and now wants off altogether...I think?

Bkc1777
Bkc1777 in reply to Hidden

I have started with 0.25mg in August then decrease to 0.088Mg. For the last month. I wonder how long I will be awake tonight!

tredlight, I take my iron and magnesium tablets in the morning. So shall I change it to night time?

Thanks

Hidden
Hidden in reply to Bkc1777

Yessssssssss!!! Take the iron at night on an empty stomach. Magnesium I would stick with anytime before dinner...for now. If I took the iron during the day it would do nothing for my night time RLS. NOTHING! And a couple of times I tried ferrous sulfate and it did NOTHING.

If your iron doesn't seem to do the trick then think about buying the bisglycinate. If you hunt around a little bit you can find it for about $10 for 180 capsules. I use a brand called Solgars Gentle Iron in 25mg capsules. Some people actually take 50mg at night but I only use 25mg. If you like the iron (either one) please let your doctor know that you are taking it.

Bkc1777
Bkc1777 in reply to Hidden

So I shall start that tomorrow as I have already taking one of my feroglobin this morning! Thank you so much. I will have a look for bisglycinate too. My leg is already playing up so god help me tonight! :)

Hidden
Hidden in reply to Bkc1777

Well, I believe that the feroglobin contains only 17mg of iron in the form of ferrous fumarate. I take 25mg of a much better absorbed iron and I figure I get about 10mg of iron actually going into my bloodstream. At the most I figure (but you could research this) you're getting about 5mg going into your bloodstream with the fumarate.

Not to be rude and crude but orgasm has been known to provide great but temporary relief. Also, if you have potassium in the house you can try taking the recommended daily allowance before bed. Lastly, some people find it helpful to sleep almost on their stomach rather than their backs.

Hidden
Hidden in reply to Hidden

Potassium should NOT be taken on an empty stomach. I consider large doses of potassium before bed to be like a natural DA. In the right form, it is supposed to provoke a release of dopamine, much like orgasm. And sadly, both will likely lose effectiveness over time.

Bkc1777
Bkc1777 in reply to Hidden

Thank you so much. I will get new iron tablets and start tomorrow night. I agree about the orgasm!

Hidden
Hidden in reply to Pippins2

Pippins, have you noticed any improvement in symptoms with the ferrous bisglycinate? Less breakthrough symptoms?

Bkc1777
Bkc1777 in reply to Hidden

Hi,

Do you think I should take 2 tablets of feroglobin?

Thanks

Hidden
Hidden in reply to Bkc1777

I would take one to start and if after an hour the symptoms are not gone I would take another. But that's me and me is not a doctor. Did you order the bisglycinate?

Bkc1777
Bkc1777 in reply to Hidden

Thank you. I haven't ordered it yet. I took 300mg magnesium after dinner and I thought I will try with feroglobin tonight and if it makes no difference then I am ordering bisglycinate. I am ready for bed as hardly had any sleep ladt night. Wish me luck! :)

Hidden
Hidden in reply to Bkc1777

Luck, much much. You don't really need luck when you have iron. After you take the iron can you put on a movie or the news and relax in bed? You don't really need to walk around to get rid of RLS. What should help is anything that requires balancing such as standing on one foot. Even kneeling requires balance. People have fallen asleep on their knees bent over an ottoman or the foot of the bed. You will never read this anywhere but I believe that the reason standing and walking relieves RLS is because our brains release dopamine in a nano-second when we stand and walk because dopamine is necessary to balance us when we stand and to coordinate movement - that's a fact. But I think that fact is what relieves RLS. Not quite sure why stretching seems to help people. Anyways, one time I was watching a movie and had RLS and stood up and leaned on the wall. I still had RLS at a low level. Not that is a bizarre feeling, to have RLS while standing.

Bkc1777
Bkc1777 in reply to Hidden

Hi tredlight,

Thank you so much for the support. I went to bed, watched a bit of TV then fell asleep around 10.30pm. Then woke up around 12.30am with a headache and rls... took another iron tablet with milk then lied down a while. It took me about an hour to settle back but I did it! Woke up just before 7am! Have a mild headache since this morning (assuming all the side affects coming off from pramipexole?)

I am going to look around the web for the iron you suggested and buy some. Any specific place you but yours from?

Thanks again,

Bx

Hidden
Hidden in reply to Bkc1777

I like Amazon but I've even heard people on here buy the bisglycinate off of Ebay and save a few dollars. The headache shouldn't be from the iron because you took it during the day for two days without that effect? By the way, milk might interfere with complete absorption of iron. Any food will except vitamin C.

Welcome to the Ironman club. I'm happy for you!

Bkc1777
Bkc1777 in reply to Hidden

I have no idea why I had this headache (probably little sleep?) all day.. can't move my head but apart from that i am ok! :)

Anyways I just wanted to let you know that my house looks like holland and Barrett now! :) got b12, folic acid, magnesium and of course solgar iron bisglycinate! :) let's see how I go tonight. :)

I will have the iron with orange juice tonight! I am all prepared! :)

Hidden
Hidden in reply to Bkc1777

Wait, wait, don't open that b12 or folic acid just yet. Nutritionists these days like b12 to be in the form of methylcobalmin and folic acid in the form of methylfolate. Don't get me wrong, I know there are a couple of people on here who got relief with plain old b12 and folic acid. Supposedly up to 40% of the population can't "methylate" b12 and folic acid into a useable form.

Feeling lucky?

As far as the headache goes your iron formula includes b12, folic acid and b6 in addition to the ferrous fumarate. Is it possible that one of those did it? I don't know/? Time will tell.

Keep us posted!!!

Bkc1777
Bkc1777 in reply to Hidden

I have already taking some half hour ago!

I have now stopped taking feroglobin cause I started individual tablets.

I shall just carry on magnesium and iron then. :)

Thanks

marsha2306
marsha2306 in reply to Bkc1777

Just FYI, I take magnesium with my lunch.

Bkc1777
Bkc1777 in reply to marsha2306

I feel I have benefited from iron but not sure about magnesium yet! Thanks though. I take at dinner time and it seems to be ok.

What saved me was one 28-mg. Dose of iron bisglycinate a half hour before bedtime. It's an OTC med, also called Gentle Iron. Take with an 8 oz. glass of orange juice. That will help as you wean off your meds. Take with a few crackers or some thing very light to prevent a tummy ache. I'll post more about this later--how I came off Ropinerole.

You can't just stop taking these dopamine agonists--all RLS meds--you need to reduce VERY slowly with iron every night. Reduce by just a few mgs. Once a month until you are off.

More later about how I am getting off my meds. Feels like freedom. IRON BISGLYCINATE is the key!

Bganim1947

Bkc1777
Bkc1777 in reply to Bganim1947

Hi.

Thanks for your reply. It has been 3 nights now I haven't been taking pramipexole and I am not going back to it after having a terrible nights! :)

I have started with magnesium and feroglobin but will buy bisglycinate today as feroglobin has only 17mg iron in it.

I look forward to reading your post about how you are getting on with no medicine.

B.

Bkc1777
Bkc1777 in reply to Bganim1947

Also I was on the minimum amount of pramipexole. I started with 0,25mg then started taking 0.125 for about 3 weeks. I have been off completely now for 3 days.

Bkc, I applaud you. You are most likely saving yourself the pain of a much more significant withdrawal from pramipexole down the line. At the minimum you are educating yourself about your rls and what it responds to. I wish I had done that years ago.

Even if you decide to reintroduce pramipexole at some stage, you are increasing your understanding of the effects of it on you. I eliminated it about a year ago and swore I would never use a dopamine agonist again. Unfortunately, nothing else has the instant, silver bullet, impact for me. My consultant prescribed neupro which is a slow release version of ropinerole and I do take it for a few days from time to time depending on what is going on in my life. Nothing else works as well. But I am determined only to use it intermittently. I am anxious that if I ever had an illness or accident that required me to be in bed for a prolonged period, I would have something that would make the rls bearable in that situation and for me that is neupro. Even after taking it for a few days, I find that my rls is worse for a while when I come off it again.

I really hope that you find taking iron bisglycinate in the evenings works for you. There are at least three or four people on here for whom it works wonders. You can get it in Holland and Barret if you are in the UK. Even if it does not work immediately on your symptoms (it never did for me), it is well worth raising you serum ferritin levels as this has a positive impact on the majority of rls sufferers.

You may find that you need some substances to fall back on from time to time. Other things that work for me are codeine (although it is usually not man enough for the job alone), kratom (which you will have to order illegally if you are in the UK but which is great as an as-and-when treatment to deal with symptoms which won't go away - tastes awful though) and oxycontin which unfortunately has side effects including alerting at night and (in me) central sleep apnea and also causes rapid dependence so obviously it is preferable if you can survive without it. Obviously even better if you can manage without any of these. Keep posting, it is great to read of your experiences.

Well done again and all the very best,

Rachel

Dear Rachel,

Thank you for your reply. After reading everything on this site I thought I better come off pramipexole before it is too late! Believe me I do wish I didn't! :) I am now 3nights and 3 days without pramipexole and hoping many more!

I am stocked up with all the vitamins and irons so I will see if I need any codein/tramadol etc. for the future. I am fed up with all this stuff inside me making something better and doing the worse in a long run!

Thank you again for your lovely words and wish me luck!

Bx

Sorry, just to respond to your original question, I would be inclined to try and stay off it for at least two or even three weeks. After two or three weeks the drug will most likely be largely eliminated from your system. At that point, given that you were on a low dose prior to eliminating and you had only been on it for a few months, you will probably have achieved your baseline figure for your rls symptoms and then you can start really working out what your rls responds best to.

Long wait then! :) but I will stay strong! I am through hell ATM! And after putting up with this I WILL NOT give up! :) thank you.

I was on pramipexole for 2 weeks last summer. .125 mg. I didn't want to be on it because of the side effects so I went off cold turkey (at the lame advice of my ref doctor) and it took 5 days of living hell to get off it.

Bkc1777
Bkc1777 in reply to marsha2306

3 days of hell! I am now feeling like I am a newborn! :))

NoMoRLS
NoMoRLS in reply to Bkc1777

Woot woot. So glad to hear this. 🤓🤓🤓 happy dance

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