I took krantom for rls and now I want... - Restless Legs Syn...

Restless Legs Syndrome

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I took krantom for rls and now I want to stop but worried about withdrawal

Lola43 profile image
74 Replies

Hello you lovely people,

Well two weeks ago I thought I’d try krantom instead of starting ropinerole that the Doctor and consultant said I should try. So I bought some online and I’ve been taking around a teaspoon each evening. Thing it’s around 4g.

Anyway- I’ve been getting ringing in my ears and falling asleep at my desk when trying to work. I’m also worried as it’s has opioid qualities and I’m scared of being addicted.

Does anyone know if I need to gradually taper the dose? Or will I be ok just stopping it?

I must say that I think I have really silly trying this , I’m not even sure now that it’s legal in the UK (but bought it from a website based in Uk) . I’m frightened I’ll get into trouble taking this . I was so desperate and not getting help from the medical profession.

I should never have tried it - but not I’m scared of withdrawals and making RLS worse 😞

74 Replies
SueJohnson profile image
SueJohnson

Yes you should wean off it. But please do not start ropinirole. It used to be the first line treatment for RLS but no longer is because of the danger of augmentation. Search augmentation on this forum and you will see the horror stories. Instead the first line treatment is gabapentin or pregabalin. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Ask your doctor to prescribe gabapentin.or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Lola43 profile image
Lola43 in reply to SueJohnson

thanks sue. I’m really surprised the GP and consultant said to try the ropinerole. I already take the pregablin, but still get woken up with the rls at 2am. It’s seriously making me suicidal 😞 .

I have tried to book the blood test , but will only let me do this with the consultants letter (so hopefully the will get that soon).

I’m getting so desperate. I’ll gradually reduce the krantom (wish I had never ever started it).

Thanks so much once again for your advice - I really appreciate it x

Joolsg profile image
Joolsg in reply to Lola43

Reduce the kratom slowly to ensure no bad withdrawal effects but as you've only been on a teaspoon for 2 weeks, it shouldn't be too bad. And yes, it was made illegal in 2015 in the UK.

Treatment of RLS in the UK is barbaric and outdated. I started a campaign last year to get it taught at medical school and during GP training but they refused saying GPs would research and know what to do.That is clearly not happening and GPs are still prescribing and overprescribing dopamine agonists . However, raising ferritin above 100, preferably 200 should be tried before meds and several UK hospitals will do IV iron infusions.

Also ensure you're not on meds that trigger RLS.

Did you make an appointment to see Prof. Walker? If 300mg pregabalin isn't helping your RLS you may need to switch to a low dose opioid if an iron infusion doesn't help.

Shumbah profile image
Shumbah in reply to Joolsg

Hi Jools as you know I am happily enjoying peace in buprenorphine however a doctor I saw this week for another matter asked me if I had tried Sifrol for my RLS . I am serious sick of having these conversations with doctors.

I was thinking of you and you article in the lancet and I thought to myself who on earth would teach the doctors and what would they teach them.

So very few world wide that I would be confident in. If you asked me to name 3 who where actually qualified and that I did not have yo teach first I am not sure I could.

Gosh it is tough.

Joolsg profile image
Joolsg in reply to Shumbah

I agree. In the UK, I have been recommending Prof. Walker as he will consider iron infusions and low dose opioids. I'm shocked he mentioned Ropinirole to Lola. The Mayo algorithm only considers dopamine agonists if pregabalin and gabapentin are contraindicated ( obesity).I did speak at length to the head of Training at the ABN and he agreed knowledge of RLS was very poor but he said there was a shortage of neurologists and most were fully occupied with MS, Parkinsons, epilepsy and tourettes.

We really need to get GPs trained. RLS is not a difficult area & most GPs would learn all they need to in a 3 or 4 hour online course.

It's scandalous that we can't name more than 2 or 3 knowledgeable neurologists in the UK and Australia.

It's an uphill battle.

ircam2112 profile image
ircam2112 in reply to Lola43

Did you try it because you’d heard about augmentation with DA’s or something else?

Also wondering if the Pregabalin worked better when you first began taking it?

I completely understand people, including me, making decisions like this. I’ve tried Kratom and others OTC’s. We’re a desperate bunch generally because we have a medical system that is generally ignorant about RLS/PLMD and, worse, are generally defensive when we suggest treatments or explain why something won’t work for us.

It’s been a few years since trying Kratom but as a general rule of thumb, I always taper off slowly if I’ve been taking it for a while, >2 weeks.

Lola43 profile image
Lola43 in reply to ircam2112

hi, well I’ve heard lots about augmentation . On here also - many people have suffered it. I think it’s much more harmful than opoids when it comes to side effects . There is a crack down on opioid prescribing - which I can understand, but if it’s the only thing that works , much less harmful than DAs.

Well so far I’ve been 32 hrs since my last teaspoon of krantom and fingers crossed I’ve had no withdrawals (yet) I’m really hoping I escape.

Yes the pregablin did work first of all, then the menopause came and it all came back. As the years have have gone by - each year the RLs ramps up. Used to work fine with just a little bit of cocodamol. My GPS say that opioids cause RLS, so to come off them. But I know they make RLS better . It’s like banging your head against a brick wall. I’m scared now to even visit the doctor, as they always blame the pregablin and cocodamol and tell me to come off it all 😞

Lola43 profile image
Lola43

Hi Jools ,

Thank you so much for your reply. Oh my goodness! I’m horrified that it’s illegal! I’m a nurse and would be struck off 😞.

I think I’m going to just flush it down the loo - and suffer the withdrawals (hopefully there won’t be too many) .

Yes I did get a consultation from prof Walker over zoom because unfortunately I had covid so couldn’t go in person.

He has said to take more pregablin at night (the 300 dose) which I’m doing and get an iron panel done .

He said to start the ropinerole and gradually withdraw the cocodamol and if the rls comes back will try targinact.

Treatment for rls is awful here in the UK , I really cannot get my head around how they can leave us with this torture.

I’ve been awake since 2am and I feel like I would rather end it all than suffer this continuous torture. I have a 13 yr old son and don’t want to do this to him, but the way I am at present, I’m exhausted, can’t eat, can’t sleep and am on the edge 😞. I’m too scared to try the ropinerole sue to augmentation- but may try it tonight as I’m getting rid of the krantom. I thought it would be a harmless herb, but it’s illegal for a reason . But you know the desperation to seek relief.

However I would rather this to being in prison with rls - so could always be worse if I was caught with krantom. Thankfully I only have a couple small sample packs and will throw it away now xx

Joolsg profile image
Joolsg in reply to Lola43

I'm really, really shocked that Prof. Walker suggested Ropinirole. I really thought he was one of the more enlightened neurologists who realised that dopamine agonists have such a high rate of augmentation that they shouldn't be prescribed.He usually recommends low dose opioids.

I see he has suggested Targinact and that might be the better option.

If 300mg of pregabalin is not helping, you will likely respond to low dose opioids.

Targinact is given in 2 doses, 12 hours apart and that works well for many. However, if it doesn't help after a month, go back and ask for Buprenorphine.

I wasted 5 years on Oxycontin and it clearly caused mini opioid withdrawals during the day and night for me.

Tell Prof. Walker about your suicidal thoughts. RLS has the highest suicide rate of all neurological diseases because it is nightly torture.

Push for an iron infusion though as it can dramatically improve RLS.

I would not start Ropinirole. It is miraculous at first but augmentation is horrendous and withdrawal for most is brutal and hellish and you get ZERO help from the doctors that put you on the stuff. Very few people escape augmentation. Figures say it's 80% but as most patients never bother to report it, that figure is probably vastly under estimated.

Stay strong. Go back and ask for targinact and trial it for a month. If it doesn't help, ask for low dose Buprenorphine. The side effects can be managed if you experience any.

Lola43 profile image
Lola43 in reply to Joolsg

hi Joolsg , I was really surprised too. My first thought was perhaps his prescribing guidelines had changed, as the UK is against opoids. I think the people who write these guidelines just want everyone off opoids. Treated like addicts.

I’ve sent prof walkers clinc an email, saying how suicidal I feel and can we head straight for targinact. I hope I hear something. I’m really at my lowest point now. I just want these feelings gone and at present- the fight has gone 😞

Joolsg profile image
Joolsg in reply to Lola43

I have no idea why he suggested Ropinirole as most of his RLS patients have suffered horrendous augmentation.In the meantime, show the updated NICE guidelines on RLSto your GP. They clearly state ferritin should be investigated. They do NOT need a neurologist to tell them what is indicated in NHS and NICE guidelines.

I'm gathering evidence of poor treatment by GPs so may ask you to share your story if we go to MPs to push them to get the RCGPs to educate GPs on the basics of RLS.

Stay strong. You will find a solution. It may take a few months but it will happen. If kratom gave you relief, a low dose opioid will help,as they work on similar receptors.

cks.nice.org.uk/topics/rest...

Lola43 profile image
Lola43 in reply to Joolsg

Hi Joolsg,

I will print it out and show it to the GPs, it’s like they don’t believe me . Yes I would most definitely tell my story. I’ve lost so much due to this condition and poor treatment , I refuse to loose anymore.

We definitely have to do something- because if we don’t, the medical profession sure as hell won’t xx

Joolsg profile image
Joolsg in reply to Lola43

I couldn't sleep last night for hours as I was so angry about the treatment of RLS. I wrote another letter to the RCGPs some time ago formally asking the President to review the decision not to teach RLS. They never respond to emails so I used snail mail by Special Delivery.No response. Not even the courtesy of an acknowledgement.

Every day we see the suffering of patients and usually very poor treatment by GPs and neurologists.

I really hope to push through the next stage now which will involve meetings with MPs interested in health and hopefully we can then force another meeting with RCGPs.

Neurologists know very little but most RLS patients will only ever see a GP.

It's not a difficult area and GPs could learn all the essential knowledge they need to treat RLS properly within 3 or 4 hours. A short training course would be very effective.

I do feel I'm hitting my head against a brick wall.

I'll follow you and get in touch for the next stage when I compile evidence to present to an MP's committee.

I really hope Targinact works. The average dose is 30mg taken 12 hours apart in 2 x 15mg doses.

Lola43 profile image
Lola43 in reply to Joolsg

oh bless you Joolsg,

Definitely. I am willing to help teach them if I can . Tell me story at a conference or something and do a question and answer. I can take this forward into helping my patients, (when I ever get back to face to face nursing that is, as not sleeping means I’m not fit to do it ) but unfortunately the GPs are the gatekeepers. I have written to my local CCG to see if there are any Doctors in my area that deal or specialise in RLS.

It’s such a shame we have to fight like this 😞 xx

Shumbah profile image
Shumbah in reply to Lola43

Be the dripping tap LOLA ,that was the point my doctor started to at least take me serious when I said I was suicidal. I started going to see him 3 times a week so he could see my desperation I too an exnurse knew by doing this it was all my visits were documented and his duty of care had to kick in.

He eventually had tears in his eyes because he did not know how to help me.

Long story short apon my return from New York to Australia with my letter from Glen Brooks MD and Professor John Winklmen he was thrilled to prescibe me Buprenorphine so he did not have to see my 3 times a week for a double appoinment.

Ps dont panic about the Kratom a lot of medical staff take recreational drugs just for fun or instead of a vino.

Whymelord profile image
Whymelord in reply to Lola43

Hi Lola43,any of us on this forum knows exactly how desperate you feel,and the thought of anything that could take this horrendous feeling away is worth trying.please stop taking the Kratom,I too have ringing in my ears but I think that this is a side effect of a lot of meds.please look after yourself, I know too well how you feel but please get back to your gp and get your RLS meds sorted,😘

Lola43 profile image
Lola43 in reply to Whymelord

thank you. It’s all gone now and I will never touch it again . I wish there was more help for us with this RLS. You get desperate don’t you? But I think I’d rather have RLS at home than be in the clink with it or loose my job because I had something illegal.

I wonder how they get away with selling it in the UK? Wonders never cease xx

Whymelord profile image
Whymelord in reply to Lola43

Hi Lola43,ooh the desperation is indescribable, only an RLS sufferer can know,please look after yourself, you will feel better when you get your meds to work for you.we all praying for a miracle👍

ChrisColumbus profile image
ChrisColumbus

Frankly if your GP won't allow a full iron panel blood test without a letter from a consultant (and your doctor and consultant both prescribe Ropinirole for RLS) you at least need a new GP. myhsn.co.uk/top-tip/how-do-...

Bumble34 profile image
Bumble34

Don`t worry about the Kratom, I've stopped and started it over the last couple of years, never the slightest hint of a problem. As for the legality issue I don`t expect Plod will be knocking on your door anytime soon. If the Medical Community in the UK were up to date and able to offer us appropriate treatment we wouldn't have to risk taking such as Kratom/Marijuana.

Lola43 profile image
Lola43 in reply to Bumble34

Thanks Bumble ❤️

So do you think I’d be ok just to stop it? You are completely right. If the medical profession helped us, then we wouldn’t have to resort to these other drugs/herbs or supplement

Bumble34 profile image
Bumble34 in reply to Lola43

If my experience is anything to go by....Yes.

Lola43 profile image
Lola43 in reply to Bumble34

thanks bumble. I’ve thrown it so fingers crossed 🤞 x

Joolsg profile image
Joolsg in reply to Lola43

I used it for 5 weeks and just stopped and didn't experience any withdrawals.

Lola43 profile image
Lola43 in reply to Joolsg

thanks Jools. It’s in the bin now. I won’t take anymore . That’s really reassuring. Thank you so much

SueJohnson profile image
SueJohnson

The maximum dose for pregabalin in 450 mg so you could increase it by 25 mg every couple of days, but if you decide to come off it, do so very slowly to avoid withdrawal effects. If you do it slowly enough you won't have any.

RCHD profile image
RCHD

just wean off soon… your intuition is right. Best to not use Kratom, especially if you know you have addiction issues… it is Highly addictive and creates sadly a lot of the same problems…. 😢🙏🏾

Lola43 profile image
Lola43 in reply to RCHD

hello RCHD

It’s already in the bin - tried to flush it down the toilet but it was like a puff of powder every where ! It’s all gone, I didn’t have much just a couple of sample packs. I definitely don’t want it if it’s illegal . I thought as it was a herb and you could buy it online in the UK that it must be legal. But I don’t want to add to my problems so it’s well and truly gone now . If I get withdrawals will have to try and ride them out 😬.

Should never have started it 😞

Thank you for your reply x

What was your fear of ropinirole, in yhe fact you wouldn't take it? Just wondering and hope you get relief. It's a challenge finding what works for for you I wish you well.

Lola43 profile image
Lola43 in reply to

Hi

The horrendous horror stories of augmentation is stopping me taking it. Apparently it works very well at first, but you have to keep pushing up the dose as your own dopamine no longer works . You then end up with RLS everywhere and is harder to get off than heroin. So I’m not going to touch it I don’t think.

Do you take it?

Xx

in reply to Lola43

I do take it and have for sometime. It is the only thing that helps I have not had that much trouble. If the feeling comes where I need more it's usually that I ate sugar, or drank wine or iron is low. It's not the horror story everyone paints it to be atleast for me. I'm just happy something helps.

I wish you well.

Hsc

Lola43 profile image
Lola43 in reply to

yes I had a hot chocolate the other night and had a night of hell. So try to fast from 4pm onwards. Isn’t it miserable you can’t even have a hot chocolate 😂.

But I’m willing to do anything to stop this RLS. Medical profession obviously have never had it, otherwise they would know they torture and distress RLS causes.

Thank you so much for your reassurance 😊 it really helps reduce the anxiety

DogBella profile image
DogBella in reply to

For me, ropinirole is the horror story that is talked about. The augmentation of the pain had me talking more and more for relief of the pain. Now, I am off and still dealing with withdrawal. I cannot sleep, have little food and desperate for relief. Please don't encourage anyone to take ropinirole. I can barely function, lost 10 lbs in a month, tried 3 different opioids but cannot get over the pain.

in reply to DogBella

I don't believe I am encouraging. But different things work for different people. I'm sorry you have had such a dreadful time with it.

in reply to

There are more cranky bossy people here. I only state what works for me. Isn't that what the exchange on this site is about. ? So dogbelle, don't need to be chastised by you or anyone else.

I'm done with this site before it was Sue who bit my head off. Adios folks I have no need for your biting remarks.

discgolfrules profile image
discgolfrules in reply to

please stay, there are people here who can benefit from your experience. Some of us also have PD and ropinorle is the only thing that works so far. Their are peolpe who take gaba and can maintain a low dose of ropinorole who also have PArkinsons and take it succesfully. All experience is important. Ignore the board warriors, I also have run into plenty of them over the years. Take the good, ignore the bad.

TheDoDahMan profile image
TheDoDahMan

I've had extensive experience with kratom and think you're way too worried about the fairly small doses you've been taking. A level teaspoon of it is approximately 2 grams, not 4. Kratom is legal in a great majority of US states. The DEA has tried twice to make it illegal but failed both times because of the tremendous support of the leaf from users who have greatly benefited from it. At your low levels of use, don't worry about needing to taper off.

Lola43 profile image
Lola43 in reply to TheDoDahMan

thank you so much. That’s so reassuring. It certainly worked really well for pain . But I can’t risk it if it’s not legal here. It also made me feel quite depressed , but I’m not sure if that was my fear of reading things online about it. This forum is marvellous for support.

Thank you 😊

Lola43 profile image
Lola43 in reply to TheDoDahMan

well I think I’m getting the withdrawals- I’m so tired yet my legs are going madder than ever . My hearts racing and I feel awful . I think my body has a very addictive personality. How long do these withdrawals last?

TheDoDahMan profile image
TheDoDahMan in reply to Lola43

Hi, Lola,

I'm still quite sure that the kratom itself is not the cause of your symptoms. Quite the opposite: kratom is known as being useful for those trying to taper off by those who have used opioids excessively. If you don't mind, let me know for how many days, and how many teaspoons per day, you used kratom. Then I'll be better able to get a handle on whether I feel it was excessive. Remember that for decades, cannabis was thought to be the "killer weed", when actually it has never killed a single person in the thousands of years it has been used.

Kratom is botanically a member of the coffee family and not related to opioids. Don't give it credit for being more powerful than it is.

Hoping to hear from you soon; I'm sure you'll be fine!

Lola43 profile image
Lola43 in reply to TheDoDahMan

Hello, thanks so much for your reply . So I was filling empty capsules I bought, so often I was taking 2g in the morning and around 2g in the evening. Total days I was taking it was 17 days. Last night was terrible and I haven’t stopped on the loo with stomach cramps and constant diarrhoea.

I’m throughly miserable and feel very depressed this morning. I’m wondering if I restart but taper off perhaps?

discgolfrules profile image
discgolfrules

Stay away from Ropinorole at all costs. 15 years, coming back from 4 mg for fourth time. It will break your mind. I still don't know if some of the horrors I experience are real or not.

Lenma profile image
Lenma

Don't take dopamine agonists for RLS. But what if you have Parkinson's as well?

discgolfrules profile image
discgolfrules in reply to Lenma

For people who have Parkinsons, like myself. Ropinorole helps alot. However, it's not the augmentation that is the problem. When I don't have any ropinorole in my system, had to do it twice just to establish baseline testing. Now I am doing it a fourth time to try and get off completely. Nice and slow. My dystonia is a million times worse. But I get to a point where things get loud, then the voices. It always happens at 4 mg, after about a year of being on 4 mg. From what I understand the auditory hallucinations are a specific side effect for people with PD. It is nasty and scary. GOing through it right now.

Lola43 profile image
Lola43 in reply to discgolfrules

oh bless you. First of all - even with all you are going through, you have taken them time to try and reassure me. Thank you so much.

What you are going through sounds absolutely horrendous _ I’m sorry you are having to go through that . Is there anything the neurologists can do to help?

Lola43 profile image
Lola43

oh my goodness , I hope I don’t 😩

HipHop1972 profile image
HipHop1972

Hello Lola43. I know exactly how you feel. I’ve been taking Ropinirole 6mg / day prescribed by my GP for several years and it’s now making my condition worse so please please resist your doctors wish to prescribe Ropinirole. I am now having to reduce my dose by 0.25mg every 2 to 3 weeks depending on effects and it’s likely to take at least 10 months as I’ve been advised on this forum that it’s more difficult to withdraw from than Heroin or Cocaine, a cautionary tale.

But to address your original question about Kratom Red vein. To help in my withdrawal I ordered from a reputable (Yes I know) company in Holland was posted using Dutch Mail, and it made it through customs and was delivered to Royal Mail who delivered it to my home address, on the package it did say could be officially opened in transit. It was legal to buy in uk when we were in the EU but there is a bit of confusion surrounding the legality now but I have read on a Website that stated it’s a little known fact that it’s still legal in the UK, and of course the quantities purchased are small so cannot be seen as anything else but for personal use.

I think that you are taking a to high amount of Kratom, I only take 1g max as a tea an hour before bed for 2 nights leave night 3 and so on and have been experiencing good sleep lengths up to 6 hours straight but occasionally I do wake at 3.30am make a drink read the paper while standing then going back to bed and sleeping for another hour or so but it can become addictive when used constantly and irresponsibly over a period of time but it’s withdrawal is a far cry from other Opioids and leaves the system with reduced use over weeks rather than months. There are a lot of good informative articles on line concerning misinformation about Keatom. But to wind up as with all things you have to research the pros. and cons of Kratom and respect it’s use, it’s been around a long time and helps a lot of people. I AM NOT MEDICALLY TRAINED IN ANY WAY SHAPE OR FORM so what I write are my own views but as you all know living with RLS is on occasions and for many a living hell so if Kratom disgusting as it may tast, without the addition of honey and lemon and drunk as a tea before bed and is treated with respect then I as one am not going to. Ignore the benefits. My life is improving in quality and It also appears that my wife is coming round to accepting my using it.

I wish you all well in your journey to find rest

HipHop

Lola43 profile image
Lola43 in reply to HipHop1972

thanks Hip Hop- oh my goodness. Appears I was taking far too much. I was taking the advice on the forum on fb and they said just a teaspoon, when I first had a teaspoon I thought it was too much. So I weighed it as about 4g. To split them up.

I cannot stand another night like tonight , so will restart and taper . Dear me, I feel like a right druggie. No offence to anyone, I’m just joking. But it goes to show the relief we need and the lengths we will do to get it.

Just tried calling the GP surgery again for the blood test but no letter from the consultant. So I will have to make a GP appt - that will take forever. It’s either I do the krantom and wean or I kill myself . Can’t do the second option , so I need to try and fight 😞.

I’m glad u have found some relief and good luck getting off the ropinerole. I’m positive you will and be fine if you are doing it slowly

Lola

TheDoDahMan profile image
TheDoDahMan in reply to Lola43

I'm beginning to wonder whether you have a good source for your kratom. Buying it from head shops or small stores is not recommended. I use "mitragaia.com/", not sure if they deliver to UK.

As for worrying about your taking too much: I started at about 4 grams per day and, over a year or so, gradually increased to 8 gram doses, 4 x per day, for a total of 32 grams per day, so that I could sleep, until I finally got a prescription for low-dose (5 mg, twice daily) methadone which has allowed me to sleep 8 hours/day, for the last 4 years. I NEVER had any stomach problems, even at those inflated doses. I always took it in powdered form, mixed with 8 ounces of milk and a packet of Carnation Instant Breakfast powder. As you may guess, the increase in dosage was due to a build up of tolerance, which is why kratom is not a long-term solution for RLS-induced lack of sleep.

I hope you're not buying from a so-called fly-by-night source. Check out the website I mentioned above, for what an ethical retailer should look like. Don't give up - this crazy disease has given us all a rough time, but the more knowledge you accumulate the better your chances are.

Lola43 profile image
Lola43 in reply to TheDoDahMan

Hello

Thank you very much for your reply. It really means a lot. I took a look at the website and it only delivers to Canada . Unfortunately I am in the uk 😞. I order from krantom.Uk. It seems legit but when checking my bank statement - it says Teas.Uk. So I think that’s how they can sell it. I wish I could find a doctor who would prescribe me methodone as it opioid seems the only good thing to work for rls with minimal side effects.

I wonder if I flew to the US or Canada and saw a neurologist if a doctor back here would then prescribe ? If I thought that would work, I’d be on the next plane out of Heathrow

TheDoDahMan profile image
TheDoDahMan in reply to Lola43

Hi again, Lola,

I recognize that UK prescribers will not write methadone for RLS, but many in your country report similar results with some form of buprenorphine. Read up on it and, if you have no misgivings, that may be a way out for you. Best of luck!

Lola43 profile image
Lola43 in reply to TheDoDahMan

yes I’m hopeful. The consultant said they would try targinact but think I’m going to ask for the buprenorphine as I don’t want to mess about trying other things and then having to wean off etc. I think I am learning sometimes we have to be fierce and straightforward to try and get what we need . Thank you so much 😊

HipHop1972 profile image
HipHop1972 in reply to HipHop1972

Hello Lola. I can sense the desperation in your voice and so understand I felt like that at times and used to get in my car in the early hours of the morning and drive to an all night MacDonalds to give me something to concentrate on, a fast drive burger and drink then long way home. Probably not a very sensible thing to do while suffering from sleep deprivation, also that particular MacDonalds was the favourite stop off point for night duty traffic police but as my ex Son in Law was one and called in there also my being out at 3.30am was fully explained away.

I hope I’ve not put you off the benefits of Kratom especially in your desperate state. Sleep is so important and it benefits me so I will continue taking it until I’m free of Ropinirole. I listen to a lot of audio books as I walk around and find that can help to concentrate the mind, also any fiddly jobs, anything that you have to focus your mind on does help.

You’re not alone Lola although it often feel that way. Good luck with the GP and please don’t be fobbed off he needs to understand your desperation. I’m with you in spirit HipHop1972

Lola43 profile image
Lola43 in reply to HipHop1972

oh that’s so lovely.

Thank you so very much. I am very desperate but talking to people like you on this website really helps me. I’m so sorry your struggling with you Parkinson symptoms. I hope that your medication can help - even if it means taking kratom. You have to do what ever works for you.

I have a GP appt but the soonest they can get me in is the 1st December. If this gets any worse I will book an emery appointment, as I think it is an emergency when you are on the edge and so depressed you can hardly function . All from RLS.

Let’s see what tonight brings and I also want to let you know that we are all with you also xx

HipHop1972 profile image
HipHop1972

Hello again Lola43. I sent you a rather long reply and should have sign off as HipHop1972, and not just HIpHop as there are lots of us 🤣

HipHop1972 profile image
HipHop1972

Hi Lola43, i think there have been crossed wires somewhere as I suffer severe RLS and thankfully not Parkinsons. Take care and good luck with your GP

There is the saying (comrades in arms) but think it comrades in legs on this forum.

Lola43 profile image
Lola43 in reply to HipHop1972

ooh so sorry! Yes I think so .

Definitely crossed legs (that did make me have a little chuckle) the first time today.

I think perhaps I am catastrophising due to the lack of clarity (on my end) for not having slept. It feels very dark and horrible, but I will get to the end point in which an understanding neurologist will help fight my corner about this condition. It’s been the Bain of my life now for many years . (Even as a child going endless nights without sleep becuase my legs wouldn’t stop moving)!

Now my son also suffers from it, I have to fight for him also. The poor mite sometimes steals one of my cbd patches to make it stop.

I hope and pray we all get a bit of sleep tonight. I’d love a Big Mac now though 😂 so perhaps McDonald’s is a good idea

TeddiJ profile image
TeddiJ

Lola-yes, just use the kratom until you figure out your plan. There is no reason for you to suffer like this. Nobody is going to bust you with it! You (and your son) deserve restful nights and happier days-however you can get them. We are all lucky that kratom is even an option with the way things go with most doctors.

I use kratom almost every night and I have also used opioids. It is much easier to wean off of kratom than it is an opioid.

It is not an ideal long term solution but it is a huge lifesaver. Anyone mentioning suicide should not be worrying about anything but getting sleep and feeling better!

Lola43 profile image
Lola43 in reply to TeddiJ

teddi J

Thank you so much. Yes I agree, we shouldn’t even be having to consider suicide, but at present I’m in such a dark place with the insomnia caused by the rls . It feels so scary .

These messages really mean so much

TeddiJ profile image
TeddiJ in reply to Lola43

Yes, I have been there, too, which is why I wrote to you! It is SUCH a sad, lonely and miserable place. I just want you to get some sleep and don't worry about the kratom right now-which you have been forced to take, just as I was...along with many, many other RLS sufferers.

Sleep is so important to our mental health-consider keeping water and kratom next to your bed so you can take a bit more if you awaken and get right back to sleep. Let us know how you are doing! xo

Lola43 profile image
Lola43 in reply to TeddiJ

Hi Teddi

Thanks you, that’s such a good idea. I’ll put it by my bed. Well last night I slept well (could have stayed there and slept and slept but had to get up for the school run). I also popped an electro light drink by my bed and drank that throughout the night. It too me until midnight to sleep but I did and feel more positive today. I reinstated the krantom (divided my dose by 7 capsules ) and every 3 days will drop a capsule until nothing. Hopefully shouldn’t take long. Thank you so so much. I don’t know what I’d do without you guys. I really don’t

TeddiJ profile image
TeddiJ in reply to Lola43

You are welcome, of course-it is such a huge boost to have the support of this forum.

I didn't realize you were using capsules (or I forgot). They take longer to kick in and are not ideal in middle of the night. Maybe break them open and have some ready for middle of night; it helps sleep quality overall to go back to sleep as soon as you can rather than bouncing around for an hour or more.

So glad you got some sleep and that you feel better!! Woot!

Lola43 profile image
Lola43 in reply to TeddiJ

yes I have some capsules that I ordered , I then fill the capsules and weigh them - that way I know how much I’m taking and the percentage of the deduction . It’s also because I can’t stand the taste of it . It’s awful! I’ve tried drinking it with juice etc but it’s awful 😂 . On day 2 of 7 capsules .on day four I reduce to 6 and so on every three days . I’m hoping this staves off the withdrawals!

TeddiJ profile image
TeddiJ in reply to Lola43

Yes, it tastes just awful! Ugh! I am so sick of the powder around my bedside table. Congrats on your progress!

Lola43 profile image
Lola43 in reply to TeddiJ

ha! I know! It’s all over my kitchen table and trying to wipe it off, plus getting the powder Stuck in my nails. Thank you. I just hope I get some prescribed help and don’t have to depend on my own “off licence “ remedy. But got to do what we can to catch some zzzzs . Well here’s hoping anyway . Hope your doing well Tesdij

TeddiJ profile image
TeddiJ in reply to Lola43

lol-I hear you...sometimes it is all over my sheets, since I try not to get out of bed. I don't want to take it forever, either. and thank you! hang in!

Lola43 profile image
Lola43 in reply to TeddiJ

you too TeddiJ.

I currently contemplating going to the US to meet  Dr. Buchfuhrer. I will do anything to make this stop .

TeddiJ profile image
TeddiJ in reply to Lola43

I did fly to see him. You might want to choose the east coast instead-since it would be easier and closer to you. Plus you need to make sure you can fill the prescriptions in the UK. Shumbah flew from Australia to NY-perhaps that is an option, too...ck her story and info.

Lola43 profile image
Lola43 in reply to TeddiJ

Hi TeddiJ,

Yes I will do! Thank you so very much. I’ll do anything to get some help. I might have issues feeling the prescription here, but I think anything is worth a try . It would be lifesaving to have this treated . I’d eat dirt on toast if it meant it could work

TeddiJ profile image
TeddiJ in reply to Lola43

Well, that is what kratom is-dirt on toast! Lol!

Have you talked to Joolsg about the local (UK) help she received? She's doing great after much suffering and hell.

And PS: I went on methadone and later tried BUP and Oxycodone-if I have to take an opioid, I would prefer the BUP out of the 3. I did not like being on methadone even though it does work very well for RLS.

Just an fyi for you! It also means you could stay local and save yourself a ton of time and money as well as monthly pharmacy headaches.

Lola43 profile image
Lola43 in reply to TeddiJ

ha ha! Yes your right!

I have spoken to Joolsg and Shumba . I’m trying hard to get the same help, although they had to fight absolute tooth and nail for it, I’m going to do the exactly the same. Even I have to walk the four corners of the country and world to get it. (Would probably be able too when my legs are bad, they would just carry me weather I liked it or not 😂 xx

Heavyd65 profile image
Heavyd65

the withdrawal is nothing like opiates. Just tapper off. I/3 your dose every three days. That’s what my doctor told me. I’ve been using Kratom for several years. Every drug has side effects. Kratom in all natural. It’s probably a good idea to switch to something else just to give your body a break though.

Lola43 profile image
Lola43 in reply to Heavyd65

Hi Heavyd65

Thank you , I think we have to do what we have to do until the medical profession take us seriously. You guys have been more helpful to me than any medical professional and for that I’m so thankful to you all 😊

march1044 profile image
march1044

I've taken kratom for ten years, and it still works fine, although I've had to start taking a little more. I did have to stop for a week one time, before a surgery, and I didn't have any withdrawal, although I understand some people do. But it's a mild withdrawal, nothing like coming off a DA or a opioid.

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