I had a mini stroke last weekend - I personally believe this was due to the extensive rls and periodic limb movements I have experienced over the last two and a half years. I have read research papers that suggest the rapid changes in blood flow with extreme plmd explains why more people with chronic rls have strokes. I would be interested to know if anyone else has experienced this.
My only risk factor for a stroke is I am overweight - however prior to this chronic rls period I was only marginally so, I have gained 2 stone due to night walking and snacking and being on pregabalin which brought my whole body to a halt. I am saying this because I feel if my rls had been stabilised I wouldn’t have been significantly overweight and I wouldn’t have had a mini stroke. My cholesterol has always been low, I don’t smoke and rarely drink, prior to being virtually paralysed by pregabalin I walked daily and went swimming 2-3 times a week.
My second question relates to the drugs that I have now been put on ‘for life’. One is clopidigrel a blood thinner and the other is atorastatin - a statin to break down cholesterol. Since taking them my rest less legs and movements have gone off the scale - I am only sleeping 2-3 hours a night in short bursts. I am wondering if either of these are known to worsen rls and what are the alternatives?
Any information or shared experiences would be greatly appreciated. The first week or so after a minor stroke are crucial in preventing a major one so I will keep up with whatever medication I am given however I don’t think this is workable long term if I am to recover a ‘normal’ life.
Thanks!
(Ps every night I take 175 pregabalin, cocodamol and 1/4 tablet of clonazapam, I was trying to convince my doctor to try Targinact but I then had the stroke…,I’m not going to be given any other drugs any time soon, my ferritin was 105 when last tested )
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Drls
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I had a massive stroke at 16 ('94) caused by Antiphospholipd syndrome and have been on warfarin (anticoagulants) ever since. I have had RL on and off since I about 1998 but has also been manageable & only every so often. About 5 years ago it became a nightly occurrence, starting late afternoon, early evening and also affecting my arms. Just over 12 months ago I was put on Ferrous Fumarate for unrelated issues and noticed that the RL instantly stopped (there is a big link between ferritin & RLS & I believe for RL sufferers they recommend the level to be as near to 200 as possible). In regards to blood thinners making RL worse, I have never experienced this to be the case (I have taken anticoags every day for 28 years) but clopidogrel is an anti-platelet so is slightly different to an anticoag. Alternatives for clopidogrel are aspirin, prasugrel and ticagrelor, so maybe it's worth discussing this with your GP. There may be a reason why they has specifically put you on clopidigrel (maybe it is the best one for you in regards to the other medication you take, medical history or something like that). Doing a quick search has revealed Plavix, (Clopidogrel) can make RL worse in some cases, sorry! check out this link for info on RL & clopidogrel ehealthme.com/ds/plavix/res.... Whether or not this is the case for most anti-platelet medication, I'm not sure.
Thank you - sorry to hear about your stroke at 16 that sounds very scary! Yes I googled clopidigrel and also found the link to rls - im thinking with them trying to prevent a major stroke in the short term that is the priority - I am on aspirin as well for 21 days. Yes I will discuss with my gp when the initial risk period is over - best wishes D
I had a mini stroke February last year and was put on Atorvastatin: really bad RLS (and deep fatigue). Came off and put on Ezetimibe: not as fast acting against cholesterol, but didnt induce RLS. GP then tried Rosuvastatin: effective against cholesterol but also exacerbated RLS. Now back on Ezetimibe: RLS gone (also gave up diet drinks: artificial sweeteners also made my RLS worse). Statins are the devil and are overprescribed.
Thank you that’s helpful - I haven’t even got high cholesterol so maybe I can come off altogether once this dangerous period is over - however thst also gives me another option
Prescribing statins has become something of a kneejerk reaction, and that's particularly dubious if high cholesterol hasn't been measured. Mine was somewhat high, but even the Oxford Vascular Study couldn't really pin down the cause for my TIA.
Also see my separate post about research questioning the efficacy of statins..
Furthermore, there have been increasing reports of studies suggesting that the supposed link between 'bad' cholesterol and strokes, and treatment with statins, is less clear than previously supposed. For example "the overall benefit of taking statins may be small and will vary depending on an individual's personal risk factors":
Thank you for your information. It seems that there is a recognised link between rls / plmd and strokes/ tia’s however no one knows what causes what. Have you seen this research:
Which suggests plmd can cause strokes independently of anything else. I tend to think this is what has happened to me because prior to my rls being unbearable I didn’t have any of the other risk factors. It is a conundrum indeed.
How are you now? Did you recover from your tia and are you managing some quality of life?
Thanks for asking: TIA only affected me at the time, no lasting effects at all - other than those induced by statins! (TIA *may* have been triggered by slight narrowing of right carotid, or perhaps by first AZ covid jab 10 days before).
HOWEVER it delayed treatment for previously diagnosed prostate cancer, as consultant wouldn't risk surgery because of TIA. Eventually had hormone therapy and then radiotherapy which resulted in some side effects, still ongoing, but cancer at least 'in remission'.
oh god sorry to hear that - but good you are in remission now. My husband had a radical prostatectomy in the first covid lockdown and that was when my rls went through the roof. Prior to that it was only minor and not a life changing issue. I am going to try to stop the statins after required 21 days if my cholesterol is still as low as last blood test.,thanks for your help.
Interesting that your RLS increased during a very stressful time with your husband. Do you believe that it was stress which caused the change or were there other impacts on your lifestyle e.g. eating different foods if you are busy? There are a variety of causes reported for initiating RLS, for some people it’s operations for others it’s a different physical trauma, or pregnancy. Some have reasonably straight causes such iron levels being low during pregnancy but others are less clear. I’ve also seen several reports that tinnitus can become worse during periods of stress and I wondered whether something in the way we react to stress with increased cortisol, adrenaline, inflammation and the sympathetic nervous system causes it to get worse.
hello, yes I believe I reached a point of extreme stress that pushed my sympathetic nervous system over some sort of line. As I said my husband had a radical prostatectomy in the pandemic which means he went on his own and arrived back a day later with a bag of medical items for me to look after him at home. I was trying to run a training company that was traditionally face to face remotely and I had a number of very hostile students that were making my life difficult .. my daughter was also Ill and because of the pandemic we couldn’t get proper treatment.
I’d always had some rls but I managed it quite naturally with no other issues however once it had got that bad nothing I could do ( and I tried everything….) could control it. Stress was the key with me definitely.
Thanks. Sorry you had such a bad time. I’ve found meditation quite good for managing the stress and the escalation although it hasn’t made either RLS or tinnitus go away. I’m just generally calmer and things don’t bother me as much.
Do you think that maybe the RLS and tinnitus are related? I have both severely, RLS progressing over the years and tinnitus and hyperacusis coming on later in life as a result of auditory trauma, but they got worse after surgery and tons of medications. I’m convinced some basic neurological dysfunctions are responsible for all my troubles but I’m still trying to piece it all together as it’s not exactly simple. I suffered from chronic stress in childhood but also some genetic anomalies that have triggered a cascade of disorders. The main thing is that adrenaline tends to run rampant, and it’s linked to other excitatory neurotransmitters such as dopamine and glutamate. There’s a profound imbalance there as the inhibitory neurotransmitters are irritating rather than calming things down. I’ve found that I’m exceptionally sensitive to serotonin and glycine, both of which should help in getting to sleep. But as soon as midnight comes and those neurotransmitters rise, I’m wide awake, and then as I’m finally dropping to sleep with the aid of some sleep medication, I wake up again from the RLS. The interesting thing is that the hyperacusis and tinnitus also get worse towards the evening and are a bit better in the morning. And that’s not because of tiredness, it’s clearly circadian.
I have also been interested to find out that I have the genetic predisposition for RLS, but also for blood clots. I agree with Drls that there could be a connection and wouldn’t rule out the possibility that RLS and a stressed out nervous system in general could trigger stroke.
I don’t think the tinnitus and the RLS are directly connected to each other, but I suspect they were both made worse when I had back issues, and my nerves were “overexcited” as the NHS described it. I think a combination of discs physically pressing on my spine, combined with a lot of distress and anxiety and stress on my part, caused my nervous system to go into a hyperactive and hyperaware state which has gradually settled over the last four years as I have learned to work out what I can manage, and also that I am probably more robust than I thought I was. At the start, I had a lot of other symptoms such as tingling on my upper body, arms and face, all sorts of shooting pains in various limbs, although mostly feet legs and groin , twitching muscles and these were all typical of overexcited nerves and an overactive sympathetic nervous response. For me, the breakthrough was a year taking pregabalin, which suppressed the symptoms and slightly more importantly, helped with the anxiety which allowed to do more and realise that I wasn’t totally broken. There are still some nerve issues e.g. my toes always tingle and certain stretches really fire up the nerves and I think this background level is what has made the tinnitus and RLS worse. The RLS went up a step after the back issue, and my tinnitus first appeared then. As I’ve learned to manage the back I’ve not managed to reduce the tinnitus or other sensations but I’m much less stressed about them.
Ok, I understand. My observation is that the same neurotransmitters operate in the brains and in the spine, and so the connection between the ears and the legs may not be as far fetched as one would think. I myself suffer from degenerative discs and joints disease and spondylolisthesis. Everything I have studied has pointed to glutamate excitotoxicity, poor oxygenisation, and problems with the functionality of inhibitory neurotransmitters. But it’s horribly complex stuff and even the most brilliant neurologists are still scratching their heads. We wait and see.
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