To start with some positives: a big thank you for your advice and support a few months ago. It gave me the confidence to ask the GP to re-look at my ferritin blood test results and the latest RLS treatment guidelines. My iron levels are now up and the RLS considerably eased, although not resolved entirely.
As part of my treatment, I was put on Pregabalin. I wanted to post about my particular experience for other people trialling this medication. I know a lot of people have very positive experiences with it – this isn’t meant to detract from that at all, but just to flag up one potential side effect to be aware of.
Pregabalin worked extremely well in reducing the RLS. I stepped up the dosage gradually from 25mg to, eventually, 150mg. At that maximum dosage, I didn’t experience any RLS symptoms at all.
The downside was that I was affected by one of the side effects, which is that Pregabalin can cause/increase/exacerbate anxiety, depression and suicidal ideation. This was, at least initially, a subtle side effect (some very unpleasant intrusive thoughts at night started at the 25mg dose), but it increased in severity each time the dose stepped up. At 150mg, my mental health had a very marked and sharp deterioration – well beyond anything I’ve ever experienced and very distressing - and I had to come off the Pregabalin. As I gradually reduced the dosage back down and came off it, the side effects thankfully ceased.
I wanted to post about it, because until that final stage, it wasn’t an easy side effect to spot. Most people with severe RLS and insomnia experience some impact on their mental health. In addition, I have Long Covid, which also was taking its mental toll. Separating out my existing mental state from the side effect of the medication – as well as not being over-vigilant/fearful about the (often terrifying!) list of side effects that come with these medications – was tricky. Some of it was only clear in hindsight.
I don’t think this is a particularly common side effect of Pregabalin, but I found this research article a very helpful read when I was in the thick of it - search.informit.org/doi/abs... . It is a study of 50 patients who were given Pregabalin to treat persistent neuropathic pain, and goes into a detailed case studies of the 5 patients who suffered this side effect. It was helpful in matching and confirming my experiences as a side effect and not as an unrelated decline in my mental health.
Frustrating as hell in some ways, of course, as the Pregabalin was great for improving the RLS!
But, on the plus side: taking the Pregabalin for several months gave me some relief while the iron tablets took effect, which has definitely improved (if not fully resolved) things. I’ve also been able to come off the Pregabalin with no withdrawal issues and with no ongoing side effects to my mental health. In all honestly as well, that crisis point kick started me to properly address the actual mental health struggles I’ve been having due to long-term ill health.
Ideally, though, I would have clocked the side effect sooner before it got to such a distressing point, and I hope this post might help others avoid the same thing.
Main takeaway: This is not a ‘don’t do Pregabalin’ post. Definitely give Pregabalin a go, but do keep an eye out for this side effect.
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RiversofLondon
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Thanks for sharing that information. It is extremely helpful.Sadly, all the medications that can treat RLS come with side effects, some more serious than others.
I'm glad you realised what was happening and managed to get off pregabalin.
As your RLS improved on iron tablets, you clearly respond well to iron treatment.
What is your serum ferritin now?
There are some on this forum who need levels above 300 to gain any relief. You may be able to get an iron infusion if you live in an area where your local hospital is aware of RLS and low brain iron. Otherwise, you may have to pay for a private iron infusion.
Have you tried a low dose opioid, like codeine? Until ferritin levels are raised, you could ask your GP for a 3 week trial.
Thank you, Joolsg - yes, its a risk with any medication, sadly. I'm very glad too!
My ferritin level was at 130 ug/L in my last blood test (end of August). My GP has been hesitant to continue prescribing iron tablets and given that Long Covid is probably a key factor in my RLS, I'm going to see how the next few months go before pushing for more iron.
I'm currently on zopiclone for insomnia and lingering RLS. This is managing things for now. Thanks again.
Many on here use ferrous bisglycinate every night just before bed. You don't need a prescription. You can buy it as gentle iron from health shops.As I previously mentioned, some RLS patients need serum ferritin above 300 to obtain relief.
Search posts for iron/gentle iron or posts by salemlake who has a list of people who benefit from taking ferrous bisglycinate at night.
It's difficult to measure brain iron levels unless you take a lumbar puncture to measure iron in the CNS.Professor Walker did mention at our AGM last Saturday, that one way of getting iron to the brain is to administer it via a lumbar puncture directly into spinal fluid.
There are also specialised MRI machines that can measure iron in various parts of the brain, but again, very difficult and expensive to arrange, especially here in the UK.
If your serum ferritin is 1000, it could be due to inflammation. Serum ferritin is a 'guide' as to how much iron is getting pushed into the brain. As we all respond differently to iron pills/infusions, there's no answer, unless you can get the special MRI that measures brain iron levels in the substantia negra.
Here in the UK, it's highly unlikely that we could get these specialised scans.
I am sorry for your experience with pregabalin but pleased the iron is helping. You might want to try gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The starting dose is 300 mg and after 3 weeks you can increase it by 100 mg every couple of days. Since you are now aware of that side effect you should recognize it quickly before it becomes worse like before. Hopefully that doesn't happen and since the pregabalin improved your RLS the gabapentin will too. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
Looking at the article I want to point out for those that don't bother to, that it said " Although these patients had a history of depression, their mood had been stable before commencing pregabalin. Soon after commencement they reported changes in mood, and development of depression and/or suicidal ideation" So not all 5 patients developed suicidal ideation.
Thank you, Sue - you're absolutely right to highlight that the side effects can be anxiety and/or depression and/or suicidal ideation. I landed all three, but this isn't always the case and I strongly suggest that people keep an eye on the appearance or worsening of any of these.
I'm not going to try the gabapentin as I strongly suspect I'll have the same reaction (Long Covid is making me very susceptible to side effects in medication). Fortunately, the iron has improved things and, between that and sleeping medication (zopiclone), the RLS is manageable. I'm hoping that as my Long Covid will improve, the RLS will more fully resolve as part of that.
Hi Rivers, you can try only taking iron when you need it. Iron is to RLS what aspirin is to a headache. You really can take it one night when the RLS is bad. Try taking 50mg of ferrous bisglycinate on an empty stomach. If you’re like me, and many others on here, your RLS will be gone in 60 to 90 minutes for the night. Good luck with everything!
Someone on here should have told you about this cosmic miracle. This has become a well known phenomena, at this point, that has helped many people from going insane.
healthunlocked.com/rlsuk/po... In this post, Bkc says she treats iron like a painkiller. She’s right, iron is to RLS as aspirin is to headache. Bkc is in such a good position at this point that she wants to figure out a way to get rid of the RLS on a more permanent basis. She wants to treat the source, not just the symptoms.
RKM7 profile 1 year ago “You’re back!!! It’s great to read your post!! Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. You’re advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach!! I just completed 3months of berberine so as you have advised, I’ll take a month off. Yes, my cholesterol has come down too!! I’m thrilled!! I also continue with fasting overnight and that helps! Whenever I eat later in the evening or have sugar in my diet the RLS acts up again. I would still be suffering every night if you hadn’t recommended these changes! I plan on slowly reducing my Gabapentin dose over time. I’m hopeful that I will only need a lower dose or maybe none at all.”
River, the above 14 members probably represent less than half of those on here that have been helped by iron at night.
FINALLY, proof as to why I consider ferritin to be essentially irrelevant with regard to RLS. I quote:
“Serum ferritin level is considered as a good biomarker of iron stores. Although iron deficiency has been associated with RLS pathogenesis, low serum ferritin has only been reported in 10–20% of adults with RLS. Moreover, recent large clinical and population-based studies did not confirm the association between RLS and serum ferritin levels. One isolated study showed that low serum ferritin level is a potential biomarker for RLS augmentation, one of the most severe complications of this syndrome. Augmentation is a treatment-induced paradoxical worsening of RLS symptoms caused by long-term high dose dopaminergic therapy, and remains the major challenge of RLS.” nature.com/articles/s41598-...
To clarify, I knew about iron as a key treatment for RLS, but my impression was that this was a gradual effect over time, as opposed to something that could give more immediate relief. Has this been the case for you when your iron levels were at any point, or is it more effective when ferritin levels have already been brought up? Many thanks.
Ok, the above post is ready for prime time. NO ONE on here should be recommending an iron infusion before they tell newbies about this nifty little trick. I consider people on here telling everyone and anyone to go for an iron infusion to be reckless and dangerous. Don’t listen to them. The iron at night thing won’t work after an infusion - probably for weeks or months because of a little hormone called hepcidin. People must always try this first. Then they can decide whether to roll the dice and continue taking oral iron in the hopes that raising ferritin to 100 plus might lessen symptoms. Worth a shot I guess.
Omg Restless , you had mild RLS until Long Covid. That changes EVERYTHING…. to me at least. Studies have shown that people with Long Covid, and certain other post-acute conditions, to have elevated hepcidin, low serum iron, elevated ferritin and eventually low red blood count. These conditions can lead to anemia or what’s better known as “anemia of chronic disease.” I’m not saying this is you, but possibly at a sub-clinical level? It’s so strange, to have high ferritin yet be anemic isn’t it? And I see your ferritin is towards the high end of normal? Anyways, bottom line, I would try the iron at night thing when the RLS is giving you a hard time. From your posts, it sounds like your RLS has improved with oral iron, so that’s great. Try to be patient. I’ve heard it can take around a year, even two, for Ling Covid to subside substantially. In the meantime, if there are any clinical trials near where you live you might want to consider participating. This virus is giving the medical community the battle of the century.
EDIT, you should try 25mg of ferrous bisglycinate first. After an hour, if RLS hasn’t subsided you can take another 25 mg I’ve done that and it has still worked just fine.
You’re the perfect example of someone for whom an iron infusion might be contraindicated. Or not? Next life I want to be a Hematologist.
It is worth a try because it’s simple with zero side effects and if it works for you then you have an instant fix and can forget about the other difficult drugs and decisions that other sufferers have to deal with. Like your experience with pregabalin we do all seem to react differently. It didn’t work for me and I’d be interested to know how you get on.
I really feel for you on the Long Covid. My husband and I are afraid enough of that that we still don't go anywhere unless we have to and still wear masks.
I don't know where you live but in most places you can buy iron over the counter or from Amazon.
Thank you, Sue - its not been a fun year! I wish you and your husband well!
Thank you for sharing your experience. And for your balanced approach regarding taking pregabalin. It sounds like you've been through a lot and i'm glad for your sake that you're off pregabalin.
There are a few Lyrica survivors groups on Facebook. Many members have had experiences such as yours, as well as other adverse effects.
I take pregabalin (300mg nightly) and have done for nearly a decade. It's far from perfect but it has helped me get the sleep i need to function.
On the other hand, i know people who have taken a really low dose and have been almost catatonic as a result. And i know someone who blames their marriage breakup on their partner's addiction to pregabalin. So, as you have identified, a real mix of responses to the same medication.
Hi Amrob, thank you for your message - I'm really glad it came across as a balanced take, and that pregabalin helps you function. I didn't know about the Facebook groups, but goodness, some of these stories are awful. Sadly, there really is no 'one size fits all' with medication, it seems, but I'm certainly finding that getting the right level of information and hearing the experiences of others helps navigate the minefield. All best!
Morning Riversoft,Brilliant points you have made. I had awful experience with Gabipentin but does not mean everyone will. One of my main problems was my mind was all over the place and I could not get past side effects. I have lots of family responsibilities and needed to be alert.
I'm so sorry to hear that, Lally lubs - and know exactly what you mean...that drifty catatonic feeling is awful and takes a while to figure out, simply because you're so drifty! When reactions can range from 'no side effects at all - this is amazing' to 'all the side effects - this is hell', it unfortunately is a matter of trying it and weighing up the pros and cons, along with your lifestyle needs.
I really hope you've been able to find another way forward. All best and have a lovely day too!
Sorry you had bad side effects. I found pregabalin eased anxiety and as a consequence enabled me to look at things more objectively. I too came off it without issues but more for another side effect, albeit mild, which was the slight cognitive fog.
It's morbidly fascinating how differently we all react. Glad you were able to come off it without issues, and I hope you've found a good way forward for your RLS. All best!
Hello Riversoft and everyone,Gabapentin changed my personality after four weeks! Cognitively I felt absolutely awful and as I have to look after my son felt out of control which was not acceptable for me.
It's a very long story health wise but everyday I take a step forward which is the only way to go🌈 I am a great believer in distraction whatever form that takes. Walking despite living an urban life! Reading early in the morning on current affairs and everyday trying to do small act of kindness towards others. I end my day with TV to take my mind elsewhere......may we all go forward each day.
I love Lyrica (pregabalin) for pain, but I also get argumentative on it. Plus, I gain a lot of weight on gabapentin & pregabalin. I bet I’ve put on 40 pounds in a year- terrible. My doctor told me it slow down your metabolism.
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