I will copy and paste previous post and update accordingly.
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 (around September 2020) and suffered severe augmentation 5 days after dose increase around January 2021. Which I was unaware of until around May 2021.
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 Advised 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 diet and lifestyle changes, including finding many triggers. More recent taking iron nightly and with orange juice and having nightly fasts. Still little or no relief.
I took the plunge and grabbed the box of pregablin a few days ago. (18/11/21)
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?
On 7th & 9th day of taking pregablin symptoms did not ease at all.
On the 11th day I stated 100mg every two days (50mg every day instead of once every two days). Which did not help atall. Made symptoms a lot worse.
12th day - I found taking 50mg at night, 30mins after my symptoms intensified really badly.
13th day, I decided to cease the drug completely and found had little or no symptoms.
14th day and again I have no symptoms or RLS since stopping the pregablin two days ago.
I’m struggling to comprehend what is going on with my body, why I become so tolerant to medication so quickly. Why has the pregablin at such low does stop being so effective in such short period? And when stopping it, my symptoms seemed to have vanished for the time being.
Can anyone offer advice Lonepine, joolsg, Elffindoe.
Thank you in advance
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Freegaza786
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Hi, I recall responding to you before about this and I think my overall suggestion was that you can't expect consistent results if you don't take it consistently.
i.e. the same dose every day, at the same time.
50mg is probably less than a minimum effective dose.
If you take pregabalin and symptoms appear after 30 mins then it is UNLIKELY that the pregabalin has triggered the symptoms because it takes 2 hours for the pregabalin to start working.
My normal suggestion would be to take at least 150mg every night for at least 3 - 4 weeks before deciding whether it's working or not.
Without doubt & despite what anyone else says for a long time Pregabalin taken 50mg at night gave me very good relief & the relief started on night 1. Everyone is different & probably there are people with all sorts of different metabolisms. I did think it was a wonder drug for some years, then I’m afraid the effect wore off & I needed 100mg & then 150mg. Then I cut down & stopped it very gradually as it stopped working & the side effects were too much.I do think myself it had some sort or permanent effect though can’t be certain.
I was off it a couple of years, then got desperate & decided to restart. I never got any benefit 2nd time.
Yes, I’m wary of medication as well now. I was SO pleased about the effect of Pregabalin for so long & then all hell let loose ( though nothing like the problems that DA’s can cause.)I have read it suggested that Pregabalin is less likely to work if the person has previously taken a DA - I never did though.
Butterflysun1 that is something to think about. I’ve heard that somewhere on here before about pregablin not working with DA users.If you havnt been on DA you have been lucky.
Hello, I have been taking Pregablin for approximately one year. I started on a very low dose and in the end have been taking 175mg per day. Unfortunately I have now become tolerant to the medication and despite this dose being sub therapeutic (I believe) my GP will not consider increasing the dose nor does he offer any alternative treatment. I am now going to start weaning off the Pregablin very slowly to avoid the expected unwanted withdrawal symptoms. I have had some success with Hemp Oil, three times a day and a couple of puffs of cannabis at night if I develop RLS symptoms. It seems to me treatment for this dreadful disease is pretty hit and miss.
You should insist your doctor prescribe a higher dose. 175 mg is still a low dose. I take the equivalent of 250 mg and get complete relief. Refer him to mayoclinicproceedings.org/a...
Thank you for your reply, I would probably change my GP but where I live there is a major shortage and it is very hard to get in to see a new doctor. I have been told about the cannabis tablets or capsules that are being developed. They wouldn't be bad the psychoactive substance would have been removed I think, from what I have been told about the product.
kelirock i can’t really advise you or say anything about the cannabis as I don’t really know much about it myself.
My options are quite limited due to so much bad experiences with medications. And sleep is a big problem for me. If cannabis can help with that and relieve the RLS and the same time it would be a win - win.
If you are struggling with RLS symptoms then should ask your GP to refer you to a specialist in RLS.
Stick with this forum as a lot of members heads are like Wikipedia when it come to RLS. That’s a good thing. I don’t know where I would be without this forum.
Free Gaza, you’re the third person in a week to report a worsening of RLS symptoms within 10 to 30 minutes of taking Pregabalin. You know me, l like substances that immediately trigger RLS symptoms because l believe then they’re doing just the opposite of the DAs. And when you stop the Pregabalin your RLS goes quiet - for however short a time.
I think the drug has a cumulative effect on some people (some of it is still in blood 35 hours after taking after all ) and then reverts to a D2 receptor antagonist and even D1 agonist much like cocaine rather than a calming dopamine/GABA enhancer. Somewhere on here is an article I attached where mice given 30mg of Pregabalin displayed no drug seeking behavior, but at 60mg and 90mg they did display this behavior, just as they do with cocaine and Meth. Rightly or wrongly so, I feel that cocaine would make our legs go crazy. 60 mg of Pregabalin to a mouse probably means 300mg plus in humans. But if you’re a slow metabolizer of certain substances then you may have hit that conversion threshold with the Pregabalin just by taking it nightly. Then with each additional pill you get immediate RLS.
Plus drugs have a paradoxical effect on you - I recall that diazapem had the opposite effect on you. Well I still think you’re on the right road. Each day you rest well, eat well, exercise, etc., is the best medicine for your receptors. Maybe only take the Pregabalin with two days in-between then use tramadol on the off nights if you have unbearable RLS. The important thing I believe is that you get a good night’s rest.
How has the past two nights been? Please make sure the form of iron you’re taking is ferrous bisglycinate. You don’t even need vitamin c with this form - just an empty stomach.
Be patient if I don’t respond immediately. Holidays, work, country has lost its collective mind, 2022 is an election year and I’m way left of Bernie Sanders so I have my work cut out for me. 😕
I can agree with Pregabalin worsening RLS symptoms shortly after taking the medication, 300mg in my case. It doesn't matter if I take the Pregabalin early or late at night, the effect is the same within 30 mins and it takes hours of walking to ease the condition before attempting to sleep. I am convinced their is a link.
Thats a very interesting comment you make about the Pregabalin I hadn't noticed the commencement of RLS symptoms post taking the medication but looking back it did cause symptoms not long after taking the drug. Currently I am feeling quite comfortable, no restless leg symptoms at all for a couple of days now.
Yes I did have paradoxical reaction to Lorazepam around January 2020 after being on it 4months daily (don’t know what my GP and consultant psychiatrist were thinking ). DiaZapam did the same.
I don’t think I’m going to continue with the pregabalin. Increasing does made my symptoms worse. And last 3 nights have been good 1/10 after stopping in completely. However tonight they crawling back but still tolerable.
I guess the only forward is to experiment myself with the right information.
What Joolsg said in another post really hit home. The less medication you can take to manage your RLS the better.
ferrous bisglycinate I have ordered this more recently after hearing a lot about it from different people. I have been taking Folic Acid iron tablets I think il have to check.
And totally understand with delayed reply. I think most are the same including me. Working with 5 kids life is hectic.
Thank you for all your information, you have encouraged me to take the approach I am taking.
I think tramadol is my best bet on those really bad nights, which does work a dream if I rarely take it.
What I’ve also realised sticking to the nightly fast religiously (because let’s face it, who can fast when you pacing around all night) is totally having some kind of affect. I think anyway.
Hi FreeGaza, you promised an update after the New Year. Well? Another gentlemen on here went down the drug route due to SSRI induced/increased symptoms of RLS - similar to you. People who did not need RLS meds prior to SSRIs, should not need them after stopping a SSRI. Your case really brought this fact to light I feel. This is becoming the new epidemic on the Healthunlocked block. Where are you at in your journey?
Hi Hidden hope your well and had a positive start to the new year.
I’ve been waiting to update so could come back with something a lot more positive. (Maybe a report of no RLS)
The dose increase of the recent pregablin worsened my symptoms and upon stopping it I had instant relief the next night.
The last 4 weeks I have continued to have little or no daytime symptoms. ( As the days are going by these are vanishing)
I have also had very mild symptoms in the nights, very mild. And some nights no symptoms at all. Again as the days are going by these are lessening too.
Out of the 4 weeks I have had 4 really bad nights (in 4 weeks) were the symptoms have not been tolerable so I’ve had to reach for the tramadol (100mg) and oh boy did it offer relief. And I got 8 hours approx the nights I took the tramadol.
I suffer with insomnia prior to RLS which does not help matters. I cannot take tramadol every night just to help me sleep if I have no RLS.
4 bad nights out of 30 compared to before is not bad at all. Where I’m hoping the bad nights should ease even more over time. (As my receptors repair)
I got my iron bisglycinate 50mg every other night. Stopped the OJ in night.
Taking Magnesium in evening (375mg) and Vitamin D3 Cholecalciferol.
Since stopping the the Ropinorole in May 2021 my legs have always felt weak and numb. Results last week have showed damage to the myelin sheath on my nerves. And searching that on google says it signs of MS.
I’ve got consultantation with neurologist on 13th January. Hoping to know a lot more then included my recent levels on my bloods.
Nice job taming the RLS beast. Really nice. Keep us posted on that test result interpretation. On the rare RLS night you might want to reach for an extra iron tab before the tramadol. I can’t take the iron every other night, I must take every night in order to control my RLS. A peaceful new year to you.
Hidden if it had been left to my GP or my neurologist then there would be no taming. It’s all thanks to this forum and people like yourself with past experiences that have helped me thru and taken the approach I have.
So let me take this opportunity to sincerely thank you and all others on this group who’s advice guidance has literally saved me a lot of extra pain and torture. Thank you.
The reason for taking it every other night is so I can build up my ferritin levels in the hope that should ease symptoms.
The last 3 nights have been RLS free. However still not sleeping. I find the lack of sleep is worsening my RLS? Am I right to think that?
On the nights I reach for the tramadol, I will try the alternative and reach for the iron and see if it has any affect.
One thing that does really help, nightly fasts.
Let’s face it, when your up all night how can you fast. How.
Yes, I believe that sleep is great medicine when you're trying to up-regulate your receptors from the DAs. Do you have a good psychiatrist? A really good one? I know you don't like meds, but what I always recommend to people on here for insomnia is trazodone. They come in 50mg tablets, but half that amount would suffice for sleep. Trazodone is an old-time anti-depressant, not used much for that purpose anymore, and not sure why not. Anyways, it is sedating and not considered addictive. Same way as Benedryl is considered sedating, but not addictive. Only trazodone does not make the symptoms of RLS worse. Do you work for yourself or someone else? If you work for yourself I recommend afternoon naps. Afternoon naps are great for night time sleep - so I believe.
I have been under the care of a psychiatrist for the last 5 years. Good? I don’t know about that. But she does take the information I give her on board, which is a good thing I suppose instead of disregarding what I say.
If I was to ask for trazodone, I know she would not have a problem prescribing it me. I will discuss it with her on next consultation.
And regards to the MRI results, the appointment is on 13th January so will know further then. Fingers crossed.
And I work for KFC so not myself, but working a lot less hours then I used to. I used to avoid sleeping in the day in a bid that this will help me sleep in the night.
More recently I found when I did kip in the day ( unintentionally) I was more prone to falling asleep in the night.
Your always onto something Hidden . Are you a clinician?
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