Rls augmentation looking for advice

[Dasymoo]

Thank you for adding me.

I am really struggling with augmentation rls

Looking whether to go cold turkey or come off my meds slowly.

[Hidden]

If you are taking a dopamine agonist then the best advice is to withdraw slowly and add in an opioid. I stopped them cold turkey in the past due to ignorance on mine and my Drs side.

If you take a benzodiazepine then withdraw slowly - cold turkey can kill with these ones. If its a problem with opioids then you can stop cold turkey but one of the side-effects of withdrawal is restlessness so things could be bad for a while but you get over it quicker.

Hope you get some relief soon. Have you looked at diets? People have got benefit from a low fodomap diet and I have had tremendous success with a vegan diet - in my whole life my body has never been so quiet.

Take care

[mantel in reply to Hidden]

Hi raffs, how long have you been on a vegan diet for? I have dropped meat from my diet but still eat dairy eggs and fish. MY son became vegan a year ago for several reasons. concerns about the environmental impact of farming etc, not wanting to harm animals but also to see if it would help his dermatitis . Unfortunately there has been no change in that. He has seen a change in his general health though and at Christmas meeting some friends he had not seen for 6 months they could not stop saying to him how different (in a good way ) he looked. He has also given up alcohol and any substances he was taking. I find Ocado the best place to buy Vegan convenience foods from. They have the biggest range. This is best time to be a vegan as there are far more choices than ever before. My son was a massive burger fan before and it is one thing he really misses.He was also a cheese addict and as yet we have not found a good alternative although Violife are pretty good. Things are changing though and they are about to launch a synthetic plant based milk (Perfect Day) in the US that they say tastes just like the real thing it will first be launched in products like yoghurt and cheese but will be sold by the pint later and also the Impossible Burger , also stateside, apparently tastes and looks just like the real thing. I have contacted them to see if they plan to bring it to the Europe and they said they do but want to get it in all of the US first. There is also the Beyond Burger again America and also is supposed to taste like the real thing. I think it may be a year or two before we get any of them here in The UK but they will come and as more and more people are turning their backs on meat and animal products we should get some good plant based versions of these things of our own. Exciting times ahead .perfectdayfoods.com/. beyondmeat.com/ impossiblefoods.com/

[Hidden in reply to mantel]

I had planned to start on 1st Jan but was ill so started 1st of Feb. I can't for the life of me remember how long it was until I noticed results, I was just sitting watching a movie when I realised I was SITTING watching a movie! I normally sit, stand, jiggle and squirm.

Yeah tried the cheese and it would be an acquired taste, the Voilife one is by far the best; I had a mozzarella and Red Leicester that are best forgotten about, I can't remember what brand they were. There is a vegan event in Belfast this weekend and if well enough hope to attend to get some ideas and tips. I hear they will have some quite tasty goodies and a friend intends to spend a small fortune so should be worth a look.

The states are way ahead of rural Ireland on many issues, not so much on others, so will have to wait it out for another while. I am also gluten free which hampers things significantly, oh I miss you my little proteins

I've had a bad night with pain and what I thought was RLS starting in again, (there were Wispas on the table what was I meant to do!!!!) but it seems to be sciatic and the pain is causing a restlessness type thing in that leg, Jebus but it makes me so glad to be at peace this little reminder is not welcome. I have a rotten toothache as well so that was adding to my ill ease but with morning comes relief

Sorry to hear it didn't work with your son. My daughter has just turned vegetarian as she saw a video of how animals were slaughtered and couldn't eat meat after. Reminded me when I watched a video of a cow being slaughtered as per kosher rules, (not that I eat kosher just happened to be what it was) I was gutted and couldn't eat meat for years after. This time however I do miss a few things, more so than when I was vegetarian but that will pass in time. Onwards and upwards from here.

[Dasymoo]

Hi thank you for answering my question.

I am on pregablin a very high does twice a day it doesn’t work any more

I have it in my legs arms shoulder neck fingers toes and recently it has went to my vagina I’m devastated as don’t want this.

I don’t think continuing with meds will benefit me.

I can’t live with this much longer.

I will look into a diet.

Thank you for your advice.

I am so embarrassed and devastated

[Hidden in reply to Dasymoo]

No need for embarrassment, this is a difficult condition and your treatment is working against you. If I were in your position, apart from diet, I would just stop cold turkey and try and get it over with quicker - that said the info from here:

recovery.org/topics/lyrica/

it says Lytrica acts like a benzodiazapine - the proper way way would be to wean off rather than stop cold turkey as a benzo withdrawal can cause seizures if stopped suddenly.

It is obviously exacerbating things so come off it and get your Dr to prescribe something like Targinact which will help with the withdrawal

[Hidden in reply to Dasymoo]

Hi there, I'm replying though I don't usually about augmentation as the questions are usually about dopamine agonists. But I was on Pregabalin too and the same happened to me. Most folk say Pregabalin doesn't cause augmentation but I'm convinced it does.

I think cold turkey would be impossible. Also I don't think it would be safe. I came off gradually. One of the side effects of withdrawl is 'restlessness' so that's tricky. I don't know of any information about what can be added in to help, sorry. I think it's a much less well researched field.

My max dose was 150mg once at night. I found, though I must stress this is not official guidelines, that cutting down wasn't too bad at first but trying to get off the final 50mg then 25mg was hardest and i had several attempts and it had to be really really slow.

There might be some advice out there about how to cut down Pregabalin when prescribed for other conditions.

I was a Dr ( GP ) in the UK. I used to find when I wasn't sure about things that the 'Medical Information Dept' of the relevant drug companies could be very helpful as they often had info and advice which wasn't widely disseminated. You can only access if you are a Dr. I used to look up the phone no of the relevant drug co - you can see who makes it on the data sheet inside packages, then phone their switchboard and ask for the medical info dept. i would suggest you see your GP or neurologist, ask him/her if they know how to cut down and if not ask them to call that dept. A decent Dr should do this for you.

There is nothing to be embarrassed about. It's a dreadful condition and augmentation makes it even worse to deal with. I think Pregabalin will be known about re augmentation before long. It;s just been used less frequently and for less years than the DA's. I discovered the effect on RLS by chance when I was given it for another condition and called the drug co ( I was still working then ) to ask if they were aware of the effect. They were and were about to start trials. I bet they'll know about augmentation too and hopefully will have info and advice about what to do.

Will be interested to hear how you get on.

And sending you my sympathy

[Hidden in reply to Hidden]

I came off Pregablin cold turkey, think I was at a high dose but only on it a short period as it was no good for me but I know at that time I was in a dreadful state and wouldn't have noticed much difference.

THAT SAID I am very lucky in coming off drugs - stopped tramadol cold turkey and was on max dose for several years - not a pleasant time although there were a few spacey days that were strangely enjoyable!!!! Research would say the best way to come off and stay off these sort of drugs is through a gradual reduction worked out with your GP. Any difficulty could be addressed through the local addiction centre as some people may find great difficulty coming off and need extra support.

Can I throw in the suggestion that you look into your Iron levels with your Dr and maybe consider gentle Iron, (check in the search bar here for some very interesting threads on it) and I will re-emphasise - look into a vegan diet, best decision I ever made, (if the wife is reading this obviously the decision to marry her was the best ), a little planning might be enough to change your life dramatically for the better.

Good luck.

[DisneS in reply to Hidden]

Hi Raffs

I was interested to hear that the vegan diet has helped you so much. Guess you are the kind of person that made sure other factors weren’t contributing to the success so think I might read up about it and have a go!

Thanks for the Info

[Hidden in reply to DisneS]

I have done a hell of a lot of reading and info gathering on RLS and have tried EVERYTHING that includes some drugs bought off the net before they were made illegal. I have tried most types of drugs bar the benzo's but I have had sleeping pills from similar families that left me tired and restless anyway so not to bothered about them. I have looked at epigenetics to see if there was a viable option that way, (couldn't find one) and tried everything else except Madlegs1 favourite - bar of soap in the bed

I have at my worst not been fit to leave the house with my arms and torso effected and random spasms in crowds is embarrassing. I have suffered my entire life so its not a secondary thing that I have. I know diet does a lot but am still surprised at how good its been. At one stage recently I was using Targinact, tramadol, Neupro patch, gentle iron and cannabis - and still squirmed, there was some relief but man did the Neupro and tramadol do a number on my cognition thank God I can think that bit clearer now.

I don't like the vegan diet, there is more work and you can't have all the goodies but it is a small price I gladly pay to feel so good. I still take Targinact and at times cannabis but that is for pain issues not RLS. I am so glad I made the change and would wish that all here would give it a go and even if a couple got better it woud be a great thing. I never thought there was a solution outside of medicine and am happy to say there is - TRY IT.

[Dasymoo in reply to Hidden]

Try what?

[Hidden in reply to Dasymoo]

Vegan diet, mentioned at start of the last paragraph!

[DisneS in reply to Hidden]

Oh! Meant to ask you how long it took before you started to feel better?

[Hidden in reply to DisneS]

No idea - ME has left me with a sieve of a memory sorry!

[Dasymoo in reply to Hidden]

I will look into it.

What is targinact?

[Hidden in reply to Dasymoo]

It is a mix of Oxycontin and naloxone that is prescribed in UK for RLS and it is pretty good.

[Dasymoo in reply to Hidden]

I have just looked it up

Does that cause constipation

As I have chronic constipation and need to irrigate everyday.

[Hidden in reply to Dasymoo]

Opiates can cause constipation the nalonoxe helps with that. There is one mention of a contra-indication relating to bowels and it is an obstructive disorder:

medicines.org.uk/emc/produc...

Any drug of this magnitude would have to be got through a Dr who would know your history and take that into account.

[Dasymoo in reply to Hidden]

Raffs you are very knowledgable.

Having low iron being borderline anemic, pre diabetes and hypoglycaemia and restless legs in most off my body and chronic constipation.

I’m in and out hospital with blockages and it’s hard to shift

So I irrigate every day.

I also read one of your posts saying that antihistamines are a big factor of rls

You seen so caring and knowledgeable

Thank you for helping me.

I hope you are well.

[Dasymoo in reply to Hidden]

That medication sounds perfect for me I’m going to ask my consultant to give me this

Can a go prescribe this medication. X

[DisneS in reply to Hidden]

I do have quite a lot of other health issues. I suffer from ME and have problems with blood sugar and seem to need a lot of protein to help me feel as normal as possible. However, you have inspired me! Will have to try and find an eating plan for myself. By the way I HAVE tried Madlegs 1’s bar of soap and added it to the list of treatments which you didn’t think would work and don’t work!!

Thanks Raffs

[Hidden in reply to DisneS]

lol Madlegs1 and myself believe I think a special place in hell exists for that bar of soap

I too suffer with ME, had to retire early because of it and has been a rough few years. The diet seems to be helping with that too. I am sure you know how to monitor your blood sugar so that should let you keep check on your diet, obviously if you are taking any medications discuss with your Dr first. This might be of interest:

pcrm.org/health/diabetes-re...

[DisneS in reply to Hidden]

Actually it’s not a ‘real’ problem with blood sugar according to the doc’s measurements but I think it’s something connected with ME and I’ve found that protein seems to help with the shaky feeling. Anyway, maybe I can get enough protein on the diet. Have sent up for a vegan cookbook and am now looking forward to starting the diet.

Thanks a lot for your information😀

[Hidden in reply to DisneS]

Have you looked into Vit D - decency is common in people with ME and it can cause a whole lot of horrible symptoms.

[DisneS in reply to Hidden]

Thanks. Yes I do take vit D

[Dasymoo in reply to DisneS]

Lol I have tried the soap. Lol

I’m so sorry to hear about your ME it’s awful

Thank you for your kind words.

[Dasymoo in reply to DisneS]

Lol x

[Hidden]

I should also add that the augmentation effect with Pregabalin was similar to what folk describe re DA's. I started with 50mg which was very effective, then stopped working, then needed more and more to have the desired effect and the symptoms came on earlier in the day and spread to other parts of the body. I hope eventually the advice will be that if it stops working or the above other things happen, do not increase the dose. I only got as far as 150mg as I got other side effects. 50mg at first was like a miracle. I don't think I've ever returned to my pre pregabalin baseline though - it can be very hard to tell what is natural worsening and what is augmentation but I'm convinced it was aumentation.

[Dasymoo]

Thank you

[Dasymoo]

Thank you

I am in pregablin 75 in the morning and I was on pregablin 300 at night

I have stopped the 300 at night and I am now taking pramiprexole 88 mg I have to up this to 2tabs at night

I’m so so tired and stressed.

[Hidden in reply to Dasymoo]

I very much feel for you. I have no knowledge or information about swapping over to Pramipexole but many others on this site are familiar with the drug though maybe not the swap over?? ( not sure about that). I wonder if it will be hard to tell how effective the pramipexole is till your augmented state from pregabalin has subsided which might take some time in my experience. Take great care not to become augmented on Pramipexole. There is a maximum dose for RLS I understand and don't be tempted to go above it.

I understand how awful it is to feel so tired and stressed.

[Dasymoo in reply to Hidden]

Thank you for your kind words

[18jeffries]

I used pregabalin liquid to wean off in smaller doses towards the end of the weaning off period. It was much easier to control as I could reduce by dose in smaller increments.

[involuntarydancer]

Going from 300mg of pregabalin in the evening to none is a very big step. I understand there are people who can come off pregabalin with no ill effects but Alison is correct when she says that withdrawing from pregabalin can cause whole body restlessness very similar to Rls. When I reduced my dose from 250mg to 150 over too short a period (about 10 days) I experienced an awful whole body restlessness, particularly at night, for about 3 weeks. I don’t think pramiprxole would have been very helpful for it. There is a reasonable chance that that is what you are experiencing now. If so you should experience an improvement in symptoms in due course as the effect of the withdrawal recedes.

I would strongly second the opinion that you should get your serum ferritin levels checked and focus on getting your iron levels as high as you can. Current expert opinion is that over 100 is recommended.

Alison has given some very good advice and I would second her words of caution about the pramipexole. I would be very cautious about increasing the dose of that drug above 0.16.

I hope you find some relief. This condition is hard enough without that the treatment drugs bring so many additional problems.

[Dasymoo]

Thank you for your advice.

I was going to get an iron infusion but the doctor said no in case I take a reaction with it

[Hidden in reply to Dasymoo]

That's a tricky one as it is recognised that IV Iron can cause allergic reactions requiring treatment. That's one of the reasons why I'm not asking for it - yet.

[involuntarydancer]

Dasymoo, be very cautious about taking too much pramiprxole. In your shoes I would not be inclined to increase much beyond the two 0.088 tablets. You end up in a never ending spiral of upward titration which can seriously exacerbate your RLS through augmentation and ultimately you will have to undergo an extremely painful reduction/elimination.

Much better to find a back up med - maybe an opioid - and use it to treat any break-through symptoms. I have often wondered also if one might get a longer useful span out of pramipexole if instead of increasing the dose when they ceased to be effective, one actually reduced it temporarily.