Advice needed please

[Banjo1]

Hi. I started with RLS about 10 years ago. It was getting worse with time so 8 years ago i went to my GP. Explained i couldn't sit, sleep, get in the bath, couldn't basically do anything. Then fortunately at the time, my GP understood and researched it, give me a prescription and said try this. I went back a week later and after the tablets (mirapexin) had worked, one at night 0.088 mg, she admitted i was the first person she would try the tablets on. Over the last 8 years I've been back and forwards to the house, increasing my dose as they stopped taking effect. I am currently on 5 x 0.18 my, apparently 4 is the maximum daily dosage. I went back to see a GP as they wouldn't prescribe me any, as they said i was taking too many. He actually prescribed me more and said 3 x a night. That night was unbearable. Went back to go and they then said 4 x daily and give me 2 mg clonnzepam, then reduce to 3 mirapexin after a week. The clonnzepam, absolutely sedated me. I had memory loss, couldn't walk properly, people thought i was drunk. I've had to stop taking them, so i went back to 5 x mirapexin, as i couldn't handle just taking 4 never mind 3. I have very bad side effects too now from the mirapexin. The GP referred me to a neurologist, but he was just corresponding with my GP and advised something stronger than the clonnzepam, if that doesn't work, they are to arrange an appointment. I can't go on any stronger, i work full time and self employed. I have lost alot of income zlready as I've not been able to work. This wasn't explained to me at the time, it was a doperine drug. I've ran out of tablets as my prescription is not being allowed. I am going to have a night from hell. It goes into my shoulders and occasionally my hand. I'm going to my GP tommorow and beg him for the prescription, again having to loose income because of these drugs. I also have side effects from the mirapexin. Over the years they have also tried ropineral, which knocked me out completely too. I don't know what to do, there must be an alternative to get me off these tablets, i can't function with them and certainly not without them. I'm so aggitated ATM, do i phone out of your drs or do i go to casualty. I'm a type 1 diabetic too, which my sugars go high Wen I'm stressed. I hope someone is online who can answer me asap, as all RLS sufferers will know what I'm going through. I'm currently sat on edge of my bed desperate to get some advice.

[Queenie7]

Hi Banjo, I am laying on top of bed kicking legs up and down and feel like I'm going crazy.Don't think casualty dept would be much help unless your diabetes was affected. All these drugs they give us to try never seen to be monitored to closely, seems to be a case of try it and see. I see the neurologist but he just sends lists of medication to try.Was on 4mg Ropinerole but never lasted through to next dose,then went on Requipxl ,24hour slow release tablets.....side effects were horrible,compulsive obsessive behaviour and have put on almost 3 stone in just over a year. I eat constantly in the night and so tired and depressed with the sleep deprivation. Now using the slow release transdermal Rotigotine patches, sometimes they are brilliant but other times not so good .like right now. I am trying to reduce dose from 4 to 2 mg but struggling

Think you right in saying can't function with them can't function without them. Good luck whatever you decide on.This horrible illness just controls our lives and so hard for people to understand

[mwsteele in reply to Queenie7]

Hi,

Well it's just gone 5am and in the last 6 hours I've had 2 asleep...I know it's probably 2 more than most, but that'll be it now until mid afternoon when my body gives up and I get another 2 hours. I'm pretty new to this horrible illness and the lack of sleep is just as bad as the 12 hours of constant leg twitching. I have no idea how my fellow sufferers have coped for years...I'm 3 weeks diagnosed and ready to find a bridge to jump off.

I'm trying to stay positive, reading other people's experiences here sometimes helps, but it seems that everyone has different triggers and treatments...why couldn't there just be one proven drug for us all?!

[Lavagna1 in reply to Queenie7]

right now it is 3.55am ..u can't sleep my legs are all over the place.... I want to scream and shout ..cry I am so frustrated... I have been like thus for approx 20 years .... as yet nothing either herbal or from the Go has worked.... pramipexole madd me fain weight very quickly... not what I want I struggle as it is to lose weight... quinine did nothing..... I just do t know what to do next ... the whole rls thing exhausts me..... pkeas e will someone cone up with something that works.

[NoMoRLS in reply to Lavagna1]

I had many of the same side effects like you. Like we need weight gain on top of everything else. Right? Pfft

Then the same with neurontin in addition to hallucinations and crying spells. Lordy be. Lock me up and throw away the key.

Some nights my spasms had my torso and legs lifting off the floor like I was levitating. Should have kept my fitbit on for exercise time. The pain was awful. For 2 weeks only 2 hours a night sleep. Then Dr pur me on sleep aide klonopin. It works but it scares me. Super addictive. Watching myself closely.

This group has some wonderful suggestions. We are all so different.

I'm sorry you're going through this. Keep going back to your Dr and explain side effects. Eventually we all hope to take nothing but vitamins and simple things.

Best to you. You will like this helpful feed.😎✌

[Pramipexoleaddict]

Hi Banjo1,

Firstly, you're in the right place! This site has more experts than the entire national health service, I'm not one of them though. I've only been on here since the useless Chanel 5 documentary but, in this short time I have learnt a great deal about this crippling syndrome.

It may help, although I'm sure you already know, Mirapexin is just a trade name for Pramipexole. For which there is much discussion and advice in previous posts. It's a good start. I'm usually up most nights as Pramipexole knocks me out in the evenings, it helps to know that you're not alone and those walking hours are handy for searching for advice.

All the best, help is at hand.

[Madlegs1]

I'm heartscalded at your story.

I'll be brief.

You have augmentation from the Prami.

You need to get of it slowly - by 1 tablet every week - BUT - you need an opiate medicine as well to help with the withdrawal symptoms. Tramadol (100ER twice a day) .

Check out in rls-uk.org

And rlshelp.org

These are the only rls sites worth researching.

Also follow " nick the turk" on this site who has gone through a similar situation to you and come out the other side.

Google " augmentation - Mark Buchfurer" and print out the article to bring to your Dr.

You will get through this - others have been through this hell and survived.

I know you are feeling shattered and desperate but there is a way through and you will get out the other side.

Good luck and keep in touch.

[Madlegs1 in reply to Madlegs1]

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

[Madlegs1 in reply to Madlegs1]

Just print out the section on treating augmentation, with the opioids in it. Drs wont have time to read the whole article.

But if you read the whole article yourself , you will know more about rls than most doctors.

Cheers.

[Bkc1777 in reply to Madlegs1]

And me! I have gone into dark tunnel and seen the light at the end.

It will be hard to wean off but you will feel it was all worth it in the end.

Good luck. And stay strong. You can do this.

B.

[macewan13]

You are probably suffering from augmentation from the dopamine agonists. It won't get better. I've been through that. I came off Ropinirole slowly, as I had done with the Mirapexin, with the help of codeine/paracetamol. I then tried a combination of pregablin and codeine/paracetamol. This worked mostly but I put on weight quite quickly. I am now on the Neupro patch (2 mg) which I supplement with slow release Tramadol (both taken at 6 pm, so that they can be active before the RLS starts between 8 and 9). Sometimes I have to take a fast release Tramadol during the night. I do feel a bit woozy in the morning if I have taken the second Tramadol but 2 mugs of strong tea fixes that.

I do hope you find some relief. It's taken me a long time to find something which works and it may not work forever, but you do have to come right off the dopamine agonists. The patch is one but I was off those drugs for more than a year before I went back on. Apparently the patch is less likely to cause augmentation than the other of that family and there are fewer side effects as it dies not go through the digestive system.

Good luck.

[Graham3196]

Dear Banjo

There is another approach that works for many people. They finds that their symptoms are triggered by foods they eat. There are quite a few posts about a diet called the low FODMAP diet. There is another diet called the low chemical diet. Both developed by respectable research institutes in Australia. The FODMAP is accepted worldwide as a treatment for IBS and has a success rate of 50 to 70% for that ailment. For some reason it also seems to be helpful for many RLS victims.

Please search this forum for FODMAP and read up on it. I was pretty bad with a similar problem of how to feed the family on one or two hours sleep every second night. Now I have trouble remembering how bad it was. With the diet I often get 10 or 15 nights in a row with zero RLS

The diet MUST be strictly followed at first but the result might be very rewarding. It was 12 weeks on the most restrictive diet before I saw a significant improvement I wasnt trying to give up drugs at the same time but I don't know of any reason why you should not start the diet today and at the same time slowly get off the drugs.

If you have any queries after studying the other posts please feel free to ask questions.

Read as much as you can in this forum so you get ideas about non-drug "cures" that have worked for many. The syndrome has many variants and so it has many treatments that have worked for someone.

My recommendation would be to start today on ferrous biglycinate (search the forum for it) and the diet. Search also for the combination of Vitamin B12 and Folate. I haven't seen any reason not to start on that pair today as well. This may not be a well planned scientific approach but you sound pretty desperate.

Good Luck Keep in touch.

[NoMoRLS in reply to Graham3196]

I'm glad you had good luck with fodmop. Shoot I only made it a week but it wasn't bad.

[Graham3196 in reply to NoMoRLS]

Hi I am interested to hear what happened after a week?

[NoMoRLS in reply to Graham3196]

I didn't see much diff for me. RLS same. Some reflux calmed but that's it. I have had better luck with all raw in week. Whole body calm down and RLS not as severe. Now if I could only do it for over 2 weeks....🤓

[Jeanniebeannie]

Hi certainly if you have too much it makes you worse i been on pregablin and pramipexole for years now also did have mirapexin years ago and stopd workn so changed to what i get now as i work all day i just take at night. Did take in day but was too drowsy . Does not always stop it but best so far . The more you increase the meds the worse u will be .

[Joolsg]

Hi Banjo,

Pippins has said everything you need to know. It is definitely augmentation and you have to get off the mirapexin. It is hard and very upsetting to do but there are lots of us who have gone through it with the help of the good people on here like Pippins and Elisse. Nick-the-Turk was the most recent. The 4 weeks going through it is very, very tough BUT once through it, there is definitely light at the end of the tunnel. You need your GP to prescribe the tramadol or an opiod like oxycontin during withdrawal, then you can consider Gabapentin or pregabalin as long term replacement drugs to control the RLS.

Some people find ferrous bisglycinate ( gentle iron) also helps during withdrawal.

You will get there and you will get some good days and nights in the future,

Stay Strong,

Jools

[Jaywell]

Hi Banjo 1, I am so sorry to hear how bad your symptoms are. When I first went to my doc he didn't prescribe anything or sugget any way to alleviate the symptoms. That was 25 years ago. It's only recently that he prescribed clonazepam but I can only take half the 500 microgram tablet or I'm out of it and unsafe to drive until the afternoon. I also have had rls in my shoulders and hands. It's horrible. A call to the out of hours doc or going to casualty would at least get you looked at by someone else which is often helpful. You might havevto wait for a long time in casualty. Clearly you can't continue as you are. I truly hope you get the help you need and some relief from this awful problem.

[Herve]

Hello Bajo 1

I can't quite understand the lack of knowledge of the Neurologist in terms of treating your obvious severe RLS symptoms.

A good neurologist would have undertaken a more in depth assessment of your symptoms and other medical history.

It is common practice to change dopamine agonists every 6 months or so as you will build up a toleranc e when continuing on same medication. Adding Gabapentin at increasing dose until appropriate level reached is also an option.

Prescribing Tramadol at night can also help in calming legs and can take edge of severity off symptoms.

Don't give up but insist on seeing a specialist who already deals with RLS.

Good Luck

Pierre Herve.

[Banjo1]

Thank you all for getting in touch. I ended up giving in and taking a clozapine and 20 mins later i had to phone the out of hours drs. I became very confused, talking slurred and couldn't walk properly. They assessed me over the phone and sent an ambulance. They took me to A &E where i was kept in over night until the effects wore off. The next day i demanded to see my GP and he said try these again, they are stronger than what you are on now. He said he will see me in 4 weeks and if they don't work he will get in touch with the neurologist again. I went to my pharmacy and he asked why i was prescribed this medication. I didn't know until then, they were slow release of mirapexin. I couldn't believe it. I don't need slow release i need to get off them. I don't want my body to get used to having this drug released into my system slowly but all day. The pharmacy is having trouble getting hold of them, so I'm back on my 5 tablets as usual. I'm phoning my GP up again tommorow to demand another appointment and ask him to prescribe something else. I can't take tramadol as i drive for a living but i have wrote down all the different advice you have all kindly given to me and ask what his opinion is of what i should take. Thank you all so much for your advice, I'm sorry you all seem to be suffering with this. It's a horrible feeling and just wish more more medical staff were aware of how this effects people's lives xxx