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Restless Legs Syndrome
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RL medication Disappointment!

Well, after another night with NO sleep I didn't think I could go another night so made an appointment at the doctors. He doesn't believe the severity of RL since I reduced/stopped is due to withdrawal. He thinks it may be due to not having the drug that was helping! His suggestion is that I take it back up to 50% less than it was and see how it goes then titrate it more slowly. As well as adding the Edronax. I'm so tired and disillusioned that I dont' know what to think. I was so proud of having stopped it but I cannot continue to not sleep at all. And have legs during the day as well so I can't even grab a nap in the daytime. He isn't keen on upping opioids and would rather increase the others.

I also remembered to ask him what my ferratin level was and he said 'normal' at 82. 82 is higher than it's ever been in the past but I've been taking extra iron so it should be more than that now. Had another blood test anyway so will find out on Tuesday what it is.

Where to from here... dry my eyes and reassess I guess.

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Good evening. I’m so sorry you have such an uninformed Dr. I would print off reputable articles on RLS/Augmentation to send her. You are absolutely right in seeking a 2nd Dr. I just wish you didn’t have to wait 2 weeks for help. Your Ferratin level needs to be above 100. My Dr recommends above 122. I’m on day 6 of withdrawal & just posted about it. Best wishes

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Thank you. Will read your posts too. Isn't it horrendous! Good luck to you.

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Good luck Zbirth and well done for getting to day 6. There are so many people on here who have been through it and I don't think anyone regrets coming off pramipexole in spite of all the horrors. You will feel so much better.

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Please research magnesium deficiency and symptoms of magnesium deficiency good luck

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Will do. Thanks.

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Only you can tell what you can endure, restlessstoz but for sure your GP does not know enough about rls and in particular about pramipexole withdrawal to be treating you for this. There are some articles by rls experts endorsing the use of opioids which may be of assistance in convincing the GP to provide you with some on a temporary basis. Lottem is usually good for providing links. Opioids are the only thing that will help when withdrawing from pramipexole. It doesn't matter whether you go back on the pramipexole now and try to reduce again later - you will have the same problems without opioids.

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I've been on Mirapex for more than 20 years. It always worked for me. My doc put me on Gabapentin for several other issues. I got augmented because of the conflict between the two. I started slowly reducing the Gabapentin and when I saw my doc again I told him I thought I was allergic to the Gabapentin. He told me to take it anyway! I shouldn't have listened to him. I wound up in the ER with congestive heart failure. I have damage to my heart now and may need a pacemaker.

I was able to get off the Gabapentin and reduce the Mirapex without opioids. It wasn't easy but I did it. I still need a replacement for the Mirapex but am waiting on an appointment with a different doctor.

I am really angry at the mess Dr. know-it-all caused. He didn't even know what augmentation is, and he's a neurologist.

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Really sorry to hear about your difficulties. You have done incredibly well to reduce your mirapexin. There is a stunning lack of knowledge amongst the medical profession about the treatment of rls which is matched often only with their insistence that their misinformed treatment strategy is followed. It is well worth informing yourself as fully as possible about the condition and the treatment drugs.

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I do as much as I can. I'm trying to stop taking Gabapentin completely but I have nerve irritation all over from MS. Of course it's worse now since I've been taking this a couple of years. I don't want to take Lyrica, Pregbalin or anything in this class. Idk what to do. My nerve endings burn like fire. I take L-Carnitine which helps, but I'm still miserable.

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Oh man, I'm so sorry to hear of this! You have done and continue to do so well, so be proud of that!!!! I will say with confidence that what you are going through is the hardest thing in the world. I don't care if someone argues with me on that, I will stand by that statement for as long as I live. They say that RLS is not a deadly syndrome. I say "it can be".

I don't know what to suggest here except to ask if you have the means to video tape yourself going through Hell? Your doctor needs to see what you go trough day in and day out. You have probably already thought of this, but have you told him how many consecutive sleepless nights you've had? If not, take that number and ask him what he would do for himself if he went through that.

Also, write down your situation and your emotions that come with it. I did this a couple years back at the request of my GP as a supplement to the application she was sending in to get me admitted into this special therapy program for those in crisis. What I wrote was not for the faint of heart, yet it was a testament to my exact situation. Once it dawned on me what a fantastic idea it was to have written this down, I used it to my advantage and showed it to everyone on my medical team. My therapist's reaction to reading it stuck in my mind the most. Once she finished reading it, she was very quiet for a few minutes. I asked her if she could go through what she just read. She said "no, I wouldn't be able to do this". My reply, "well, how am I doing it then?" She did not reply immediately, but I could tell that she was on the verge of tears. She took a moment, then said that the fact I was still going meant that there was hope somewhere in me.

If you are anywhere near the place that I was, that hope is quickly vanishing.

Recap: my suggestions for you

video-tape yourself and show to your doctor

write down your situation plus emotions and show to whomever cares for you.

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What wonderful ideas Jess. I think you must be pretty amazing to have done this. I will see if it's doable for me. Thank you so much. You're and inspiration.

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Sorry, I forgot the obvious way to increase ferratin levels is to take an iron supplement.

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Thank you! That is what I was going for (being inspirational), so it's good to hear! I bearably made it through my augmentation period, almost becoming a victim to this Hell that I say can be deadly, but I did and I am here to show for it. My ultimate goal is to help others through this awful time.

I am amazing to have done this and so are you!! I am a survivor and so are you (and you will continue to be a survivor)! Whether we have or have not been through augmentation, we all are survivors of this Devil-Incarnate Syndrome!!

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Thanks again Jess. :)

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Hi - so sorry for you. It is so difficult here in UK to discuss the ferritin level issue with doctors and unfortunately I can`t find anything written to show apart from the Dr Buchfurher papers. My ferritin was 59 and so it was deemed normal? I have read on here that it should be higher - up to 100, but can`t find any evidence to help my case. Do I buy ferritin and hopefully get some rest or do I continue to try to get a sympathetic ear from the doctor?

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'The tips below can help you maximize your dietary iron intake thus increase your ferratin levels.

Eat lean red meat: This is the best source of easily absorbed heme iron. ...

Eat chicken and fish: These are also good sources of heme iron. ...

Consume vitamin C-rich foods: Eat vitamin C-rich foods during meals to increase the absorption of non-heme iron.'

Be aware that 'calcium which is found in foods such as milk, yogurt, cheese, sardines, canned salmon, tofu, broccoli, almonds, figs, turnip greens and rhubarb and is the only known substance to inhibit absorption of both non-heme and heme iron. ... Oxalates impair the absorption of nonheme iron.'

The other way is to arrange for an iron infusion but from what I've read here, many people have a lot of trouble arranging one. Good luck whatever you do.

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I am between the 'devil and the deep blue sea' as I need to take iron and also calcium for my weak bones!

With the iron and magnesium supplements I find that I have been able to gradually reduce my Ropinirole dose (1mg) hooray!!! Still bewildered that I can though. Is my RLS spontaneously reducing? Can it do that? Wierd. But wonderful!

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Two things. First, separate the calcium and the iron intakes - at least by a few hours. If through food, through different meals. If through pills, e.g. the calcium in the morning, the iron before bed.

Second, yes, RLS can reduce spontaneously. Also, the ropinirole may have caused an apparent increase in symptoms. More people report that their symptoms reduce alteady with lowered doses of ropinirole (or an other DA). Well done!

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Thank you LotteM.

I did feel that my RLS had got worse over the last year so maybe there was a bit of augmentation too. I will try splitting the medication times. Thanks again. I feel very lucky at the moment!

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restlessstoz also included in hindsight taking an iron supplement; I wasn't sure if you saw that.

One thing I'll add is that iron needs to be taken with vitamin C to help with the absorption. I take mine with orange juice.

For the type of iron, lots of people on here recommend gentle iron (Iron Bisglycinate (sp?) ). Me personally, I take Amino Iron, gotten from a health food store.

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Thanks for passing that on Jess. It can be a bit of a trap the 'reply to' button!

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Buy ferrous bisglycinate ( gentle iron) and take pills and patch from PatchMD (USA based but cheap and quick post to Europe). Only take EVERY other night- studies have shown iron is absorbed more quickly if taken this way.

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Hi, Franklin, you may find it helpful to bring this article to your doctor. It's on clinical consensus guidelines for iron treatment for RLS:

sciencedirect.com/science/a...

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please read replay to franklin123

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hello franklin123 you can increase your iron level's but if sufficient iron is not getting to your brain it will not help your rls please research magnesium l threonate it is the only magnesium that crosses the blood brain barrier also look at website science direct ( magnesium and iron) good luck

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Hi, Robert, this is interesting. Can you please provide a link to any scientific study that discusses a link between iron and magnesium for RLS treatment? Also, any link showing that magnesium threonate is the only form that crosses the blood brain barrier? Thanks.

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science direct Chinese study (magnesium and iron)

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Hi, Robert, thanks, but I get so many results for that in a google search, and I don't know which one you're referring to. Can you please copy the link to the specific paper, and paste the link into a reply? Thanks!

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Dr Lauren Deville magnesium l threonate

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Okay, I did get to this page. The link to the actual paper is on Dr. Deville's website. I read through that paper. It is a study on rats, about restoring short term memory deficits using magnesium L threonate. It looks interesting. But two things stand out:

1. That study does not make any claims about that particular form of magnesium being more effective at crossing the blood-brain barrier. That is a claim that Dr. DeMille makes, with no supporting evidence.

2. The study is not related to RLS at all.

So let me ask you: have you found that this form of magnesium use your RLS symptoms? And have you tried other forms, and found them to be less helpful? Thanks.

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I take magnesium citrate also magnesium l threonate my rls has stopped it works for me thank god all i can say is its worth a try if you wait on the medical people telling you it works you will have a long wait. Goodluck

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Glad it's working for you! I may give it a try. What time of day do you take it? With food or empty stomach? What dosage of each form?

Long may it work for you!

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thankyou I take 400mg (2tablets) of magnesium citrate first thing in the morning when I started taking magnesium citrate I took 1aday for the first week then started taking 2 after that.i also take 1 magnesium l threonate before bed goodluck

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Withdrawal from pramipexole/Ropinirole is hellish BUT stick with it. Once off dopamine agonists you will be so grateful that you went through the horror.

It was the hardest thing I have ever done but I am in a much better place now.

Don’t go back on pramipexole- stick with the opioids to get you through this.

So many people have been in your position so we know what you’re going through.

Cannabis helps enormously- illegal but if you have young adult children- you can get hold of it. My son’s friend even came round to roll up some joints for me and showed me what to do! It was a life saver on those long sleepless nights with constant leg jerks.

Wishing you strength.

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I am still in the process of working out which way to go. I have another appointment with my GP tomorrow so will discuss more with him. I am SO grateful for all the information and support. What an amazing resource this forum is. Could get cannabis if it helps. My son! :) Thanks for the advice.

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Hi - I do appreciate all the information on here, however, what is likely to happen if I get off the ripinirole - I take opoids for my fibromyalgia so will I need some other drug to help with the rls as it isn`t going to go away is it? Is raising iron levels an absolute answer? Confused at the moment. :(

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Raising serum ferritin seems to make s big difference to RLS.

Some people have had brilliant results with iron infusions.

Once off Ropinirole, pregabalin is very useful and works well with opioids.

You could start taking pregabalin (Lyrica ) 2 weeks before last dose of Ropinirole and it will start to help 10/14 days thereafter.

Increasing the opioid dose during withdrawal will ease some of the leg jerks and help you get some sleep.

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I really feel for you having just gone through the same process - but withdrawing from Ropinirole, not Pramipexole. I'm still needing the opiods my sympathetic GP willingly prescribed as I gradually increase Pregabalin after a two week period on just opiods. Even so I've had nights of wandering round and suddenly coming to, standing somewhere, not knowing quite where I am, until I realise I've fallen asleep where I stand - for how long I have no idea! I almost feel guilty having got such a wonderful GP - who is now helping another patient, who happens to be a friend of mine, begin the withdrawal from Pramipexole.

I don't know what to suggest beyond what others have said. But I would urge you not to go back on what you have brilliantly and courageously achieved. DAs are awful drugs. They seem to work so well to start with but by then you are hooked into the augmentation process and the reverse journey is unbelievably awful.

RosieRow

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Will try again today for opiods! Thank you.

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Maybe u can get an iron infusion, iv, to get your levels up to 100. My husband got 2 infusions, 4 weeks apart. At first, it appeared to do nothing at all. But we now believe that was because he was in the throes of severe augmentation while on Ropinerole. He went off ropinerole all at once, going thru severe withdrawal symptoms for a hellish week, had to take off work, literally no sleep, muscle weakness, very brutal. No dr would give him opioids to assist. He has never been on opioids in past. He was also on gabapentin at the time, which he also stopped all at once. He did relent and try some small doses of gabapentin the first week of withdrawal, not sure if it was any help tho. Once the drugs were out of his system, about 2 weeks into it, he started sleeping better, and within 3-4 weeks he was able to sleep extremely well, sleeping thru the night, a king rested, with NO RLS symptoms at all. It is hard for us to fathom. He has struggled with RLS for his whole life, even mildly as a child and young adult, getting more severe for the last 13 yrs. He has been playing the med switch game since then. Has been on clonazepam and elavil combo and alternating with Neupro patch, gabapentin doses, and ropinirole...all in differing combinations and doses for 13 yrs. We believe that the iron infusion must have been the ticket, but the positive effect of it was being obscured by the augmentation going on. It just so happened that he was at his wits end with all of it that he stopped all of his meds at this time, regardless of the withdrawal process and its hell...he just wanted to get back to baseline and see what that was. And it seriously was miraculous. It's been 2 months now and he sleeps better than I do now. No RLS at all. He has been so low with RLS, suicidal at times. I hear it in your post. As a spouse, I can only watch the struggle from the sidelines, and I have no idea exactly how bad it to live it. I saw the despair. I got on this forum and learned a lot from these members who are so willing to help by sharing their experiences. Hang I there. Hopeful for you.

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Amazing that an iron infusion was all that was needed. If only there could be more studies into this and I'm sure it would be backed up. Then there could be a decisive plan for even the most basic GPs to follow- and we wouldn't be left with the hell that RL is in our lives. I hope it continues. Note that in something I've read, further infusions were needed after 2 years when iron levels had dropped again.

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USA is decades ahead of the rest of the world on this. They are doing studies on iron infusions and RLS and it seems clear that a large number of people really benefit from iron.

If you can get your doctors to explore this further you may be someone who would benefit.

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Yes. Thank you. We were told to re-check iron levels yearly. Best of luck. There most definately needs to be more research and standardized evaluation and treatments, with careful medication prescribing. I feel like ropinerole and other dopamine agonist drugs are prescribed far too cavalierly, without a good understanding of the symptoms of augmentation. All they did was to continue to increase the dosages, and then add in ever-increasing doses of gabapentin when the RLS kept getting worse.

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Thanks for sharing such a positive story.

Out of interest, what are your husband’s ferritin and iron levels post infusion?

I have read on here that they are usually above 500 for ferritin after infusion for people who have had the treatment.

I’m tempted to push my neurologist to refer me for an infusion. It’ll be difficult in the UK but there must be somewhere they will agree to it.

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Sorry your having an awful time

I too suffer day and night

I too have been to hell and back

I’m now on Ropinirole x3 day

It helps 30% I say

Rest I’m awake

Up half the night and miserable too

Cry 😢

So I feel your suffering

Go back to your dr ask him if he would like to be on the receiving end

Makes me mad drs hardly understand the disease

Hugs

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Good luck with you nights! It is so hard being awake when the rest of the world it seems is asleep. Nights are endless and by morning, the only thing to think of is 'how do I get through the day'. I feel for you too.

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Please research magnesium l threonate it's the only magnesium that crosses the blood brain barrier also look at science direct research on magnesium and iron

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I have been desperate like you until I found a Dr. who knows how to treat RLS. Here in the US, the RLS Organization list practitioners who treat this condition and that is how I found my Dr. Since May of 2018, I have been taking iron supplementation with great success; began 4x day, now down to 2 x day. My serum iron is 156 and ferritin level is 257. Important to have blood work monitored regularly. I have had rls since childhood off and on, but didn’t know what it was: worsened in the last twenty years. Have been on most of the meds used; would work for a while then stop. I think you need to find someone who is knowledgeable. Learn as much as you can from the experts, I..e. RLS Foundation . Brica

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Thanks Brica. I think that's what we're left with... to know as much as we can ourselves and hope we can find a doctor who will listen. Here, I'm in a small town that's quite isolated so only able to have a small population of doctors and it's vey expensive to get to the larger cities to access others. My neurologist flies in to consult periodically. I'm on a very limited income so cannot afford to do the flying in and out! It will limit my search considerably but I will keep trying. :)

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Sounds like your Dr. is compassionate; do you live in the US ? Johns Hopkins in MAryland and the Mass General Hospital in Boston Ma. are considered leaders relative to research and treatment of RLS. I hope you and your Dr. find a program that brings you relief. Brica

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Thank you Brica. No I live in Australia. Not very ahead as far as I can see in RL treatments or understanding. I will have another appointment with my neurologist soon so will hope for great things.

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