Recap - Been suffering severe RLS for over two years since stopping pregabalin very abruptly in February 2020 (which I regret) for anxiety. Prior to that had adverse reaction to Lorazepam (January 2020). Was also on Mitazipine (stopped May 2020) and Venaflaxine ( stopped July 2021) at the time. Prescribed Ropinorole for RLS (September 2020) and suffered severe augmentation 5 days after dose increase in January 2021. Which I was unaware of until May 2021 (thanks to this forum). Which I believe has left me permanently damaged. I then had an Iron infusion in June 2020 ( which didn’t ease any symptoms )
Anyway back to pregablin. I have a clear fear of medication, and since coming off venaflaxine in July 2021, I have been only taking tramdol 100mg on those really bad intense nights. Advised In September 2021 to start pregablin @ 50mg x3 daily. Then to 100mg x3 daily.
To me it seemed (no evidence behind this) stopping this medication triggered RLS. I’d be a fool to start it again. I have tried every other alternative including diet and lifestyle changes. More recent taking iron nightly and with orange juice. Still no relief.
I took the plunge and grabbed the box of pregablin a few days ago.
1st night - I took 50mg pregablin at night about 11pm. (It was so hard to take that first step) within 30 mins I felt instant relief. My symptoms being 8/10 to now being 1/10. Dare I say 0/10. I even slept till 7am. A whole 7hours. I havnt done that since May 2020.
2nd night - After waking up in the morning feeling a bit Groggy, I felt an instant twitch and burning. Which eased once I was up and about. I got to say no daytime symptoms at all until around 7pm. Which eased again. I still take my iron and vitamin C at night. I didn’t take the pregablin this night and my symptoms were tolerant 2/10. I had 6 hours sleep. Which is still good as last year been having 1-2 hours nightly.
3rd night - waking up 6am, feeling good apart from legs feeling a bit numb. Symptoms persisted throughout the day but tolerant 2/10. Around 11pm I plucked up the courage and took another 50mg pregablin. Within 30 mins I felt instant relief, and I had 8 hours sleep. No Symptoms.
4th night - quite a good day. No symptoms. At night 1/10 symptoms. Fell asleep gradually had 7hours.
5th night - today I have taken 50mg of pregablin and same felt a instant relief and now I’m typing on here with no RLS Symptoms. The odd burning and crawling, but I mean very odd. Compared to before.
I guess what I am asking is, is it dangerous taking the pregablin at very low does every other day then every day. Im under the assumption it’s not like tramadol or codeine which I was advised to take if and when required. I’m supposed to be taking pregablin 50mg X3 daily. Instead I’m taking 50mg every other night. Is that dangerous or is it ok?
Thank you I’m advance.
Ps I most definitely won’t reply till the morning as I’m making the most out of this for sure.
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Go for it! You're sleeping and ultimately that's what you probably need for your dopamine receptors to repair. This enables you to exercise and do that long nightly fast which is quite difficult if you're awake for most of the fast. Exercise and fasting and sleep will help repair your receptors, supposedly. Besides, Pregabalin is not a "life-saving" drug like insulin or anti-rejection meds or even anti-psychotics which you must take as your doctor tells you to. Look at how little Pregabalin you need which tells me your receptors are not far away from baseline. With that said I would continue to check in on myself nightly before you take the Pregabalin. If it's a 3/10 then maybe take tramadol. If it's a 6/10 go for the Pregabalin. Think of yourself as a person with a temporary, but bad flu. The important thing (I think) with the flu is to let that fever ride as long as you can stand it, but then bring it down at night if you can't sleep. Sometimes that might take one aspirin, sometimes two. Sometimes you don't even need aspirin but instead some of that cough medicine with a sleep aid in it. So have that mindset, the mindset of healing yourself, and actively look for and do things that stand the chance of up-regulating your receptors. Please continue to take the iron only drop the OJ. Literally the day after I told you to take it with OJ I read that juice has polyphenols in it which block the absorption of iron. Tea and coffee are the worst in terms of polyphenols so don't take those around the same time as iron either. Good luck!
I thought the same, I havnt slept this good for over 18months. So ultimately that is the main thing.
I was a bit apprehensive with feeling the affect of the pregablin straight away, as many say it takes weeks. However on all 3 nights I felt the affect after 30mins and symptoms ease almost straight away after that.
On the 6th night now, and I’ve got to say I’ve had quite a good day with no symptoms. Let’s see what the night brings.
With tramadol I found taking it at 50mg, every other night for over 7 days, the last day of taking it didn't offer much relief., and the affect lessened the more I took it. The same with 100mg tramadol, taking it everyday then to every other day didn’t help too. However when I go without tramadol 2-3 weeks and then take it again, god it’s amazing.
So far this is working for me and I’m going to continue with it, being sleep deprived has obviously not helped.
I guess what will determine my approach is how long will this 50mg every other day be affective for. When will I have to increase the dose because this seems inevitable. I’m hoping I do not have to do this for a long time to come.
The point of taking pregabalin is to prevent RLS symptoms, not to relieve it.
It's true that some medicines can be taken "as necessary", that is take it when symptoms occur and not when they don't.
This means that the symptoms are "intermittent".
In the case of RLS, it's classed as intermittent when it occurs less than twice a week.
In that case you can take a medicine only on the nights you need it. However, pregabalin is not recommended for intermittent RLS.
This is mainly because you'll only know if you're going to have symptoms after they start. The problem with pregabalin is that once symptoms start, pregabalin probably won't relieve them.
Pregabalin is a preventer, not a reliever.
For intermittent RLS then you need something that will relieve the symptoms.
The recommended drug for this is levodopa. This is because it it acts quickly and is short acting. It is very effective.
Look at the section on "Intermittent RLS" in the link below.
Unfortunately it causes augmentation very quickly and hence must not be taken more than twice a week.
Alternatives are a benzodiazepine or a low potency opioid, e.g. tramadol.
When RLS occurs more than twice a week, then it's known as "persistent". In this case pregabalin is prescribed EVERY night.
Look at the section on "Chronic Persistent RLS" in the link below.
It is also recommended the same dose be taken at the same time every night, 2- 3 hours before symptoms usually start.
NOTE, taken every night, it usually takes up to 3 weeks for it to fully work. Also during that time you can severe side effects. These are usually dizziness, drowsiness and difficulty walking.
It's therefore a good idea to take it only once a day in the evening to to reduce the risk of falking.
These side effects usually wear off after a few weeks.
If you take it irregularly, you may never get the full effect and side effects may never wear off.
Is it dangerous to take it every night? No it's not. Every drug has risks and pregabalin is no exception. However this doesn't make it dangerous.
Is it dangerous to take it irregularly, different doses, different days and times? No it's not. However, a) you won't get maximum benefit from it and b) you may have continuing risk of falling.
If you previously suffered augmentation, you may have experienced symptoms earlier in the day. Once augmentation and DA withdrawal have settled, this shouldn't happen so much. In which case there should be no need to split the dose.
Doctors may prescribe a split dose because the guidelines for pregabalin are for nerve pain or epilepsy, which can happen any time. RLS shouldn't.
You should also read the section on "General Considerations" in the link below.
You will see there are two main ones.
One refers to the role of medications in RLS. This is about other medicines which can make RLS worse.
The main ones are -
Antidepressants, most of these worsen RLS after taking them for a while.
Sedating Antihistamines - the effect of these is almost immediate, within a few nours.
These are VERY bad for RLS.
Obvious ones are anti-psychotic drugs.
Unfortunately they are also found in many common over the counter medicines.
These include -
Cough medicines
Sleeping aids
Anti-allergy remedies
Some motion sickness/anti-nausea remedies.
Do NOT take any of these.
Dopamine Antagonists, these can make RLS worse within a few hours. They are also found in over the counter motion sickness tablets.
Do NOT take anything with a dopamine antagonist in it.
Proton pump and H2 inhibitor antacids.
The second main general consideration is iron therapy.
If you tead the link below, then it gives guidance on what iron therapy is best and how to take it.
NOTE the recommendations say you can take iron every OTHER day. This is also corroborated by research which states that it is more effective if taken bi-daily.
The role of iron therapy is to raise iron levels in the BRAIN. LOW IRON causes two problems.
One is it affects dopamine function and so dopamine agonists can treat it. The dopamine dysfunction involves receptor site issues.
The other is it raises glutamate levels so pregabalin which lowers glutamate can treat it. Glutamate receptor sites are NOT an issue.
Primary RLS is not an acute illness, it is chronic, lifelong condition as classified by the World Health Organisation.
It cannot be treated like an acute temporary or intermittent illness. It needs to be consistently treated.
Even if iron doesn't apparently work, it needs to be taken persistently. The best way to judge if it is of any value is to have repeat blood tests for ferritin, say 6 monthly.
There are many authoritative recommendations, and books, published on the management of RLS. Some of which are recognised internationally. They are research based. They all more or less say the same things
The link below is to tbe latest guide published by the Mayo clinic a centre of excellence for the management of RLS.
Nothing I've written above is a personal opinion. I merely repeat what aithorities have published.
My only personal opinion is that if you read anything which contradicts what these recommendations say, then ognore it. Especially when it's suggested that you do znything which could make your situation worse.
You say the point of pregablin is to prevent not to relieve symptoms.
In my case over last 5nights, they have did exactly that and relieve my symptoms almost straight away.
I don’t think it is intermittent RLS. I have daily symptoms, defiantly more then twice a week. I just have learn to tolerate it because of the fear of meds. (Tolerating it has not been any sort life at all, it’s been hell)
I have been using tramadol for quite while if and when required, but found the more I took,(like every day) the less relief it offered.
The augmentation happened in January 2021 and off Ropinrole around May 2021. Daytime symptoms have never really settled down. I did have 7 days were I didn’t have any symptoms but that was all.
Thank your for all your information like always.
I’m still waiting for results from recent blood test to see all the levels after the IV infusion.
You know my fear of medication, but tolerating my symptoms without medication has not been living if life. It’s been hell. Hence I reached for the pregablin. And it’s working for me. Not saying it’s the same for everyone.
But the last 5 days, I feel like I have little if not sometimes no RLS atall.I know it’s early days. But I feel like a new me.
It’s shocking how down and depressed RLS can get you, sometimes to a point of no return. And how uplifted I have felt in the last 5days.
And the sleeping is a big gain for me. How long it will work for I don’t know.
I just hoped I wasn’t doing myself more harm taking it every other day then every day.
Uhh, take everything people tell you with a grain of salt. Characterizing RLS as a chronic, lifelong condition is BS. I don't care what the World Health Organization says. Forget that term RLS. What we actually have is a sub-par (compared to other humans) dopamine transport system (DAT). It is now believed that up to 30% of any given population of people may have a sub-par DAT to some extent. You can go a whole lifetime and never have a twinge of RLS yet still have that subpar DAT. Take a look at any big time auto-immune disease and 30% of those people will have symptoms of RLS, but not the other 70%. Jools recently told a story of how a friend was in kidney failure and developed RLS, which resolved once she had a kidney transplant. Madlegs on the other hand told me a story that he believes his RLS started at age five after indulging in one too many cookies.
Is a picture emerging here? A picture of a spectrum disorder of genetic roots, rather than a set in stone, lifelong chronic constant condition? So like Jools' friend with kidney disease, I tend to think that your genetic predisposition to RLS and your current symptoms can be reversed now that the DAs have been stopped as hers was with a kidney transplant. Your baseline my friend as was the case with Jools' friend = no symptoms, especially at the tender age of 30. As you age (as all of us do), our baseline, lousy receptors become even more lousy eventually leading to symptoms even for those who had little to no symptoms most of their lives. Now, if somewhere along the way, after your receptors return to baseline, you come down with a terrible stomach flu, you just may develop RLS until a few weeks after the virus passes. Or if you injure your spine or develop some type of inflammatory condition, RLS symptoms may emerge. The non-RLS world, or should I say the non-lousy DAT world, could go into kidney failure, catch a virus, become anemic and injure their back simultaneously and never feel so much as a twinge of RLS. I hate them.
I'd agree, my RLS having now resolved, for the time being at least. All of the family members with RLS had either autoimmune thyroid or pernicious anaemia but sadly never improved their RLS. I am on autoimmune diet, gluten free, and working to balance COMT and MAO as one is genetically slow, the other fast, along with poor methylation. Interesting thread, thank you.
How does one go about doing that balancing act between the two? Besides going gluten free what does an auto-immune diet consist of? Do you feel as a result of your diet you take in much fewer calories per day. What do you attribute your RLS freedom to?
I wish I had straight forward answers to that. For me, as I couldn't afford testing for reactive foods, I went for a basic 'eliminate and reintroduce' type diet. This is supposed to cut out all of the commonly inflammatory foods and then you test and add back in as you can tolerate. I used Datis Kharrazian's version and he suggests not reintroducing gluten/grains or tomatoes (and NSAIDS). I already had found that gluten was not my friend, purely by chance, ditto with dairy, so I was happy to try the diet having had clearly beneficial effects already. (This autoimmune diet cuts grains, nuts, seeds, dairy, eggs, legumes, nightshades, sugar, additives, alcohol). I was already really struggling to digest much at all so had lost weight (a lot) and actually now have put most of it back on as I have healed and am not trying to digest anything difficult. I am sure I take in enough but don't eat any junk anymore. I started to change the diet mid 2017 and still had the RLS at that point. I should say I was reacting to chemicals, everything I put on skin, smells, as well as food, (and still am) so I got rid of everything and started again with the cleanest diet and the least toxic and minimum of personal care items I could get away with. By new year 2018 I had some fairly problematic histamine issues and started using quercetin (so interested to see your berberine post and also this old one healthunlocked.com/rlsuk/po.... Unfortunately it doesn't say quite how high - I don't take a lot but it works for the mast cells/histamine and nothing else does it for me. I know it can be an issue for the kidneys in high doses). Magnesium and vitamin C also help with the histamine and I am on a low-ish histamine diet.
I ended up doing some genetic and actual testing re methylation when I realised that family history was pointing towards a cellular level B12/folate issue and no-one would test for me. This was my only option. It is impossible to know over time which, if any, of the genetic SNPs have been 'expressed' and how the interactions may possibly have affected how I am now either epigenetically or through poor detoxification. All I can say is that when I read symptoms of slow methylation, slow COMT etc it made a lot of sense of my health over many years, so gently trying to improve that - for me, that includes with small amounts of methyl(tetrahydro)folate, methylcobalamin, magnesium ( a life saver), a little B6 in active form (P5P), plus riboflavin, nicotinamide, Vit D. Some cannot tolerate methyl at all, some need more. Quercetin is a methy donor too. I also use some liver support, like milk thistle, turmeric, calcium d-glucarate for oestrogen (slow COMT affects metabolism and removal of oestrogens, metals etc as well as balance of neurotransmitters). So the RLS has gone and I am no longer bouncing off the walls with vertigo and no balance, but I have small fibre neuropathy and neuroinflammation, and other rubbish. It seems that the imbalance has been with me from birth and I was kicking the walls from childhood. I attribute it to the gluten mainly and lack of methylfolate. My view only. Best wishes
I’ve cut out those exact same food groups because of Eosinophilic Esophagitis. I assume I don’t methylate well so certain vitamins like folic acid I use in the form of methyl folate. Every one who is supplementing should use that form. Like you, I have issues with allergies and auto-immunity. My ANA is always high, but no overt disease (ie RA). I have interstitial cystitis but only frequency, no pain as most people with this condition have. So I think I have small fiber as well, or the beginning. No pain, but a constant sense of motion or tingling or something in feet and higher. I know it takes no time at all for hands or feet to fall asleep if they’re at all elevated. There’s a prescription supplement for PN called Metanx. Rather than buy it I copy the ingredients which include B12, B6 and B9. Add sub-clinical CFS and we are twins.
We are indeed! Mine diagnosed as Fibro but suspect that it is the COMT at play, as it is linked to both Fibro and CFS. Waiting for bloods from Neuro to confirm that B6 isn't too high, as he was nervous, although I only take a small amount (and it can be high even without supplementation because of not being able to use it, like B12 and folate). The small fibre likely started 22 years ago with hands first, following elbow injury, but not able to be diagnosed then. Have now had tests for large and small, including thermal threshold which seems to be enough for my diagnosis as biopsy not available (unless I pay). Only started to get attention again when legs went numb. Thanks for the Metanx info, new to me. Lots in it that I wouldn't or couldn't take so I don't blame you for making your own. That's a heck of a dose of folate though. It also contains B2 although I couldn't see how much. Some suggest that issues with MTHFR specifically are a riboflavin deficiency, others just that it is another important cofactor for methylation and also for glutathione production/regeneration (I take that too, as I have a glutathione absent gene). Riboflavin is needed for mucosa andI have read of it helping people with EoE so I guess you are already using it. Soy seems to be a common trigger, as well as grains.
Have you been checked for Sjogren's? Difficult to diagnose I know, but given possible SFN, and EoE and the cystitis you can't help but wonder pubmed.ncbi.nlm.nih.gov/835...
Usually I want to know exactly what I have so I can treat it myself. I went to see a neurologist and he thinks it's coming from my back (a compressed disc) and I do have mild stiffness in the morning. I wanted to have that punch biopsy done and he gave me the name of someone (he himself doesn't do it) and I have as yet to make an appointment. My neurologist doesn't advocate for that test unless you have more overt symptoms. It was kind of a useless visit. Plus he said there's no treatment (other than pain relievers) for PN or SFN. I have also thought of SS, but I don't have the typical symptoms of dry mouth and the "can't get out of bed fatigue." And once again, sometimes ignorance is bliss, especially when not much can be done.
Thank you so much for doing that research on my behalf. It's really fascinating to me. In all of my years searching for a treatment for the IC I never came across anything that indicated it might be SS. I have no pain, certainly no bone pain. Bursitis sometimes. And with the IC my urologist saw the lesions/ulcers in my bladder which are a hallmark of IC. At this moment in time I believe that my sub-clinical CFS (my most annoying symptom) is due to a rowdy gut microbiome and I am working on that.
So it sounds like you are doing quite well. What are your two most annoying symptoms?
Sorry for the late reply! Tricky question. I am a lot better than I was in 2017-18 but still a work in progress. Gut is not functioning well so like you I'm trying to get a handle on that. And I suspect the small fibre (Sjogren's or other cause still tbc) is affecting rather a lot. But the hypersensitivity to chemicals, whether I inhale or have skin contact, or eat/swallow, is a problem. Seeing less people for so many months I thought may be it was getting better, but of course everywhere is anti-bac'ed to within an inch and now getting back out and about it feels like I've been kicked in the head.
My mouth was really dry and eyes (although not quite dry enough) but they have improved a lot with diet changes etc. Teeth still problematic. I think a good % of those with predominantly neuro symptoms don't have the dryness, at least early on (some never) so the lip biopsy doesn't catch all and diagnosis is harder still. I'm still trying to work my way through the more reversible potential causes of SFN (the Bs - either too much or too little, zinc/copper, blood sugar imbalances seem to affect many, even if not the cause, toxins various plus mast cells to consider).
Dr Oaklander talks of IVIG for SFN (her You Tube lecture Small Fibers, Big Pain is worth watching) but the SS folk do seem to have treatments too (Plaquenil for example). Sjogren's Advocate is a useful site if you haven't found it sjogrensadvocate.com/.
My neuro offered the lip biopsy but admits it is often negative and said gluten could be behind my symptoms although he said not all neuro's agree. Here the punch biopsy is £2500, way out of my price range, especially if I am already doing all that can be done. Best wishes
I never heard of that lip biopsy. I have a strange question for you - do you know what blood type you are? Ever since I read that book "Eat Right for Your Blood Type" about 15 years ago I ask people that question whenever they have what I call a more "exotic" type auto-immune disorder. According to the author who is a chiropractor/nutritionist he has only seen blood type B. Theoretically he should see more of blood type O since that is the most common, followed by A then B then AB. If you look up the statistics for MS, it is most prevalent among B followed by O, I believe. I've only known two people with ALS and they were both B. I've known numerous people with MS and always B, except for Jools. And a woman I work with and her two sisters all have auto-immune diseases and all three are Bs. Her third sister from another father who is blood type O does not have an auto-immune disorder.
So with that said, I think auto-immune diseases start with a pre-disposition and then an environmental trigger such as a virus and maybe combined with other factors like lack of sunshine and per the author...eating foods that are not right for your blood type. According to the author, Blood Type B is the only blood type that can do well with dairy. Anyways, I am an O...a caveman. O's are supposed to be quite healthy and hardy (as was my dad) but they don't do well with our modern day lifestyle and foods. I think my problems began with being bottle-fed from birth followed by a diet high in dairy and wheat and sugar.
Bless you, I ask people the same question! We could be twins. A friend's partner lent me a D'Adamo book a couple of years ago and although I can't agree with all of it, the foods that it suggested I might have problems with tied up uncannily well with what I had been told at some food intolerance testing (Vega, which some consider equally dubious - I only did it because it was cheap, recommended by someone I trust and was being done by a practitioner with very good reviews) and what I had found from my own elimination diet importantly before either of these. I am an O, which particularly predisposes to gluten and dairy issues and those are my weakness from childhood, like you. He says we are vulnerable to lectins. Once the gluten factor has hit hard, I'm not sure you can rely on the Os being less prone to (some) autoimmunity, it being so strongly interlinked. I should have thinner blood and plenty of acid and not be prone to B12 issues, none of which are the case. Os have a hardier immune system but a more limited one, he says, and we don't cope so well with complex viruses. As EBV is now linked to upwards of 7 AIs as likely causatory (a factor, at least) and wiped me out at college, that also holds some interest. I wish I knew what relatives had been. But it is an interesting factor to consider alongside the genetics, epigenetics etc As Dr D'Adamo says, it is not a sole determining factor, but may enable refinements to assist. I was breast-fed but Mum was craving gluten throughout pregnancy, so that was possibly more problematic and I might have been better bottle-fed! But I was addicted to bread and had no idea that the reason I spent my childhood on antibiotics was mainly dairy and gluten reactions. I have been able to breathe through my nose since I quit dairy and acne vanished after 40 years of having everything thrown at it, with nary a spot since the gluten left my system. Bodies are amazing, and fortunately have an amazing capacity to heal, given a bit of time and some help where necessary.
The lip biopsy is specific for Sjogren's not SFN, and can help identify those who are seronegative, but like most tests it misses many, sometimes because it is done too soon and damage not clear enough, or done too late and identifying changes have now atrophied so also not clear enough.
Your story is interesting. Most anti depressants trigger or worsen RLS so if you were on anti depressants at any time before the pregabalin, these could have triggered or caused it. Stopping any medication abruptly is dangerous but if you hadn't been on pregabalin for too long perhaps not too dangerous.As lonepine advises, ensure your iron levels are up and avoid all anti depressants and sedating anti histamines.
If you get results from the occasional pregabalin, that seems great. Normally, it takes 3 weeks to build up on the system to be effective.
The lower the dose and the fewer drugs you can take to control RLS, the better.
Joolsg i was on antidepressants before I stoped pregablin in Feb 2020. I remained on them after stopping pregablin.Overtime I have stopped all antidepressants, initially RLS symptoms would Improve after stopping the medication but then returned. Most recent being venaflaxine been off it 18weeks. It’s almost certain they didn’t help.
Stoping medication abruptly. I would never do this again or recommend it to anyone. The lack of advice and myself being naive in thinking I’m invincible to withdrawal really didn’t help too. And now explains a lot of my behaviour.
I’m still waiting for results on recent blood test so fingers crossed.
And Yes I thought and read the same that the affect of pregablin does take around 3 weeks. However I have felt instant relief of my symptoms. (Not tho I’m complaining)
You have said, The lower the dose and fewer drugs you can take to control RLS, the better. - this is exactly my mindset. Nice to hear it from someone else.
At the moment this is working for me and it’s early days. But it’s working so il continue and update when things do change
That's brilliant. Over 50% will see improvement in RLS by getting iron levels up. I wish I'd known that before they put me on Ropinirole. I really hope you can control it with the occasional pregabalin.Good luck and keep us posted.
Spawn of the devil. Like many on here, I had a traumatic withdrawal.It's a ticking time bomb. So many on here in their 80s have been on these drugs for decades, now suffering appallingly with severe augmentation of symptoms and the UK medical profession hasn't got a clue!
FreeGaza, it wasn't only stopping the Pregabalin that caused the SYMPTOMS of RLS (to which you have a genetic predisposition) it was the fact that you continued on with two types of antidepressants after stopping the Pregabalin. Holy you know what man. The Pregabalin was masking the SYMPTOMS of RLS that was being caused by the antidepressants. When you stopped the Pregabalin abruptly (or even if you tapered) your legs are always going to go crazy on the antidepressants (two no less) if you are pre-disposed to RLS. If you had stopped the antidepressants (which may not have been a good idea at the time) your RLS symptoms would have vanished, but instead you were put on an ever increasing dose of a DA, and possibly a high dose, for about a year? Then you once again did the unthinkable in the RLS world, you stopped the DA before the antidepressant. I can't believe you didn't lose your mind for the two months you were off the DA, but still on the antidepressants. Per a previous post it sounds like when you stopped the antidepressant in July 2021, your RLS went quiet for a short while. Which would make sense per MY theory that the antidepressants only make the symptoms of RLS worse in the short run but in the long run up-regulate your receptors. But like most things in life the improvement is only temporary. I would have guessed that your RLS would have stayed quiet for much longer after stopping the anti-depressants - like until your 50s. However, it sounds like rather than staying at baseline, which it sounds like they were immediately upon stopping the SSRI, your receptors slid somewhat beyond baseline (your non-drug baseline at age 20 something = no symptoms) probably due to the fact that at that point, September 2021, you were only 4 months out from the DA. Keep doing what you're doing, as Jools has said, and ignore the misinterpreted scientific data by some on here. Rarely is recovery from the DAs a linear progression. So I wouldn't be afraid of the Pregabalin, it was the continuation of two antidepressants after stopping the Pregabalin that was giving you crazy RLS for so long. Even if you were never on the Pregabalin, at some point, fairly early on, those two antidepressants would have made your legs go CRAZY. I have to think about this some more. Your legs went quiet upon stopping the antidepressants and then within a month were crazy again despite being off all drugs and all known triggers. Like I said before, I wouldn't have guessed that. I would have guessed a return to pre-drug levels of your dopamine receptors for decades to come. Despite near total silence in August 2021 and part of September it sounds like you're back to crazy legs for October and now November. Hmmm? I'm still thinking it's part and parcel of the long DA withdrawal period that most people experience.
Hidden you actually made me think about something. I never thought of it like that. The antidepressants were causing or triggering RLS but I didn’t know as I was already on pregabalin which were masking it. When coming off pregabalin my legs did go crazy, and that’s why I always thought the culprit was pregabalin. Defiantly something to think about . Thank you.
I come of mitazipine before starting Ropinrole around sep 2020
And yes I remained on venaflaxine after staring Ropinorole.
I did stop the Ropinrole around May 2021 before the venaflaxine which was round July 2021.
They did improve initially for 4 weeks then returned. However less frequent and intense. Still daily.
I wish they did stay quiet until I was 50, god wouldn’t have that been amazing. They returned.
And yes it did go back to crazy until the last 5 days.
Everyone says you don’t feel the affect of pregabalin straight away, but I almost certainly did. It’s working for me, more better then anything else has so I’m going to keep it going hoping this continues for a long time to come.
Hidden i agree and beginning to think it is related to the long withdrawal affect of the DA Ropinorole. Only if I came to this forum sooner.
I know one thing for a fact, if I didn’t have this forum I wouldn’t have the confidence to take any kind of approach. I would be left with listening to everything the neurologist advised, instead of working out what is best for me.
I truly believe what works for me, might not work for someone else. We are all individuals. Only only we ourselfs can ultimately manage this condition with knowing what is going on with our on bodys. What is right and what isn’t for you as an individual.
Well, yes and no. We are all individuals, but as First Lady Clinton liked to say, "we have more in common than what divides us." And thank heavens for that, otherwise we would never be able to figure anything out - it would all just be pure randomness. An SSRI might make one person less depressed, another person more depressed and a third person might be led to believe he is a rabbit. In reality, SSRIs generally tend to alleviate depression and DAs tend to alleviate RLS. That's because we have more in common than most non-scientists realize.
Well, I believe I understand the craziness behind what is happening to you. Like I said before to you and many others on here, the SSRIs up-regulate our D2 receptors...yay! But only for a short period of time....boo. I'm beginning to think that period is about a month, based on your report. Plus, I just confirmed, I believe, that SSRIs have no effect on our excitatory D1 receptors. Read this 1/2 page article: pubmed.ncbi.nlm.nih.gov/988...
Picture this, DAs downregulate our calming D2 receptors... in the long run. That's bad, very bad for RLS. And just to add fuel to the fire, they also up-regulate our excitatory D1 receptors... in the long-run. That's terrible, just terrible for us with RLS. Recent studies attribute that horrible withdrawal syndrome to those up-regulated D1 receptors rather than the down-regulated D2s.
Now back to you. You were taking an SSRI both during and for two months after the DA. While you were on the DA the SSRI acted as a counterweight to the DA in terms of your D2 receptors, possibly keeping them at baseline, but alas, your D1 receptors grew ever more evil, unimpeded by the SSRI which has no protective effect on them. Then once you stopped the DA the SSRI greatly increased your D2 receptors probably beyond baseline, however painful that process may have been for those two months.
Once you stopped the SSRI the up-regulating stopped of course, but so did your RLS symptoms!!!! So you had to stop. And the symptoms of RLS stayed away for at least a full month. The symptoms of RLS stopped because your greatly up-regulated D2 receptors (thanks to the SSRI) were more or less a match for your similarly up-regulated evil D1 receptors. As the days and weeks of bliss worn on your D2 receptors began their inevitable march back to baseline, whereas your D1 receptors remained up-regulated, but even those have been crawling (rather than marching) back to baseline this whole time as well. It seems that after a month, your D2 receptors were no longer a match for the D1s and you are once again having symptoms of withdrawal. I just read that it can take up to 14 months, but I doubt that will be the case with you for multiple reasons.
Everyday that you can hang on while your D1 receptors crawl back to baseline is an outstanding achievement on your part. Like I said, you and your receptors are in the process of healing. By day let the symptoms of RLS have at you, but by night give yourself some relief in the most non-consequential way possible.
Hi again, just some more information you may find useful.
This is information published by the UK National Institute for
Health and Care Excellence, (NICE).
Please note that no UK Dr will be in any position to disagree with this information.
The information in the first link relates to the use of pregabalin for RLS.
The second link is the NICE prescribing guidance for pregabalin specific to RLS.
The third is to the NICE prescribing guidance for pregabalin generally
Hopefully you can see that this official guidance assumes that the same dose is taken every day.
There is no indication of any reason for varying it.
My only comment is, that if you're concerned about danger, I can see no reason why taking the same dose everyday, or varying it is of any effect on safety.
Perhaps the real question is, which is more effective?
This is a question you'll have to answer for yourself.
Hi Elffindoe, I don't live in the UK and bnf only allows UK people to see what they write. I wanted to read about pregabalin. I'm taking 300 mg at 8pm(ish). I've been taking it for nearly 3 weeks. Do you think it's too much. I have to take Kratom as well for complete relief and I'm sleeping very well. Tonight I'll try without Kratom and see what happens. I have even on one occasion had wine and dessert and I was fine. Wine is a huge trigger for me. It's 5 weeks since I stopped mirapexin. I'm so happy about that. I must say it's like a drug and I kept wanting to go back on it but now I don't feel like that at all. Thanks for your help
Omg, I cannot thank you enough for telling us your story. You have no idea how many years I have suffered in silence (because who could possibly relate to this) trying to figure out why iron has an "immediate" effect on drug/DA naive people, but not those on, or augmenting or withdrawing from, the DAs. I have spent so many sleepless nights tossing this back and forth in my head. Everyone needs iron to keep their D2 receptors chugging along, including the non-RLS world. It was explained to me what seems like a thousand years ago, that the iron makes the intra-striatal D2 receptors "stickier" (that's a medical term btw ;)) and more likely to catch and process some of that striatal dopamine which we have in abundance. For imagery purposes, think of that velcro ball game. The better the velcro the more balls will stick. The velcro = our receptors and the balls = dopamine. As far as I know the iron has no such affect on our D1 receptors, other than the fact that iron is needed in the blood to carry oxygen to all the various parts of the body, including the D1 receptors. The oral iron makes our D2 receptors better dopamine "catchers" and may even increase their density overall, however temporarily.
So there you have it. The iron will do nothing to down-regulate the D1 receptors that have become monster-like thanks to the DAs and ultimately that is what causes the nightmarish withdrawal symptoms. The nightly oral iron will not afford the DA users complete relief. However, more dopamine being processed by our D2s, will to some extent offset the excitatory signal that is being given off by the monster - but it's kind of like whistling in the wind. A person who has never taken DAs does not have monster-like D1s, they just have those lousy D2s for which the iron works exquisitely. And the pregabalin works exquisitely for you because it is a D1 blocker and as far as I can tell doesn't do much as far as the D2 receptors go. So you're getting a full-on D1 antagonist. Great, beyond great, in the short run. In the long-run it will continue to make a monster out of your D1 receptors.
The first night I took 50mg. of pregabalin at night it worked, and kept working at that dose. (I mistakenly increased it to deal with insomnia and ended up having to back off of a much higher dose.). If you choose to stick with the pregabalin I would strongly recommend NOT increasing the dose if a low dose is working for you. Your chances of side effects are lower.
wantokporo Sorry to hear about your experience. And thank you for your reply. It’s encouraging to hear what you say which makes me determined to control this dreadful condition with little or no meds.
If 50mg pregabalin prn gives you this much relief, stay on it! It is a much safer medication to take over a long period of time than opioids like tramadol / codeine, SSRI's / SNRI's like venlafaxine, or antiparkinson meds like ropinirole. The dose you are taking is very small. The main potential side-effects are morning tiredness, dizziness, or feeling faint on standing up. These usually settle after a few weeks. Very rarely do people get a rash or significant itching. If this doesn't go away after a few days or gets worse, get in touch with your doctor. This may be a sign of a delayed allergic reaction.
When I took Pregabalin it worked at first at what is thought now to be a very low dose of 50mg at night. I see no point in taking a higher dose if the lower dose works. I don’t know if it’s a problem taking it every 2 nd night but if you were reducing in order to stop eventually every 2nd night would I think be acceptable
Butterflysun1 thank you for your reply. I don’t think it is a problem taking it every other day, but I think some mentioned of consistency in taking it to feel the full affect of the medication.Where I’m even thinking to make it 25mg every day instead of 50mg every two days which amounts to the same.
Not reducing does to stop eventually, I have only just resorted back to it after stopping it in Feb 2020 which was a very high does 450mg.
When I was taking gabapentin which is essentially the same as pregabalin and it worked most nights but every so often I would have restless legs at night, I took a 100 mg pill and it worked within a half hour to stop my restless legs. So yes, it is meant to prevent, but it certainly can relieve RLS.
To add a bit more of my experience with pregabalin: I have varied the dosage more than once to try and help out with a bad night. While I thought it may have helped in that regard, I found I have been very likely to get depressed (which can be a side effect) until I standardized the dose again. I don't vary my dose anymore and will get up and take a hot bath or walk around for a while instead, either of which can help. I also tried to quit pregabalin, going from 50mg to 0 periodically. I got terrible leg and body shaking when I quit even from that low dose.
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I am approaching my Dr for first time with what I think I have; RLS - what should I ask?
Pregabalin not working so GP has put me on Duloxetine. I am confused!
Heartened to know I am not alone in the struggles caused by pramipexole
Fired the doc a year ago..here I am today
I am losing ground
