Restless leg syndrome

I had a subarachnoid haemorrhage in early May that was not straightforward. Whilst I've had RLS for years and years, since the bleed it has been horrendous. None of the medics involved in my care are aware of there being a connection so I wondered if anybody knew anything about it. I've got insomnia too! When the RLS is really bad NO sleeping concoction works. For about 3 weeks I've been taking Amitryptyline (which had been prescribed for the insomnia) as it didn't help me to sleep but it did suppress the RLS. I could then take a sleeping tablet to get some long-overdue sleep - I'd had nearly a month with no more than a couple of hours sleep, usually about 6am - 9am. On top of just how miserable I have been feeling due to the after-effects of the bleed, life has seemed pretty pointless. I only found this website yesterday and reading about the effects of a bleed in the frontal lobe area of the brain felt as if someone had been closely monitoring my daily life. So much of what was there turns out to be after-effects and not me being a total pain or just lazy. Sorry to go on (another manifestation of the effects!). If anybody knows anything about RLS in relation to brain injury I'd be really grateful to hear about it. The exhaustion it creates makes recovery seem impossible at times.

9 Replies

  • Hi, Sorry I don't have any words of wisdom, but I totally empathise with you. I have had RLS for years too, sometimes worse than others. The one thing I do know is the more tired I am the worse it is, so maybe that's why it is so much worse for you since the SAH. Last night was awful for me, hardly any sleep and this morning I'm a tearful wreck!

    I hope you find some relief and I'm glad you have found the site, I only found it a couple of days ago and it is so helpful to be able to share things with people who totally understand what you are going thro. They are all very friendly too :)

    Best wishes


  • Let me say straight away that I don't have answers. All I can do is tell you how much I empathise with you on this hellish condition. I too have had it for many years, so not a result of the brain injury, and it can drive you really close to the edge.

    It actually hasn't bothered me as often since the bi, but in the past I've spent hours every night either waggling my feet and toes aggressively or pacing the floor. I even used to sit with my feet in warm water, but it isn't what you want to be doing when you're desperate for sleep.

    I was told it was caused by the Temazepam I take for sleeping, but that proved not to be the case. Let's hope there are some useful replies here ; I too could use some extra tips on dealing with it.

    Cat x

  • Hi Sue and Cat thank you so much for your quick and kind replies. You can tell what today is like because I just composed a long reply to both of you without logging in. It all got deleted when I tried to log in and despite only creating my password about an hour ago, I had completely forgotten it!!! To make matters worse, I'd written down the password and still couldn't manage to enter it correctly. I've got to go to a breast screening appointment now - I will be back!

    All the best to both of you



  • Thanks Ailsa.............lovely name ! xx

  • Is RLS when your legs twitch and bounce like a continuos ticking for an age? Mine does it during the day too, usually when I put my feet up. I always put it down to having a spinal injury.

  • My legs and arms start twitching in the evening, This has only happened in last 6months ago . MY TBI was 3 years ago. I was prescribed Amitripyline too , started at 10 mg and now on 30 mg. My GP prescribed Diazepam , which I find really helps, and a sleeping tablet, but I try to not to take all 3. Sometimes my hands in the morning have the same symptoms. My GP said to take medication at least an hour before I go to bed to allow meds to kick in. I am here at 5 am awake with RLS : (. Hope my tips help

  • Hi again Ailsa. I've been looking on the web for more information and a really useful website is NINDS (Institute of neurological disorders). If you Google the title then select Restless Leg Syndrome from the list, it explains the condition in clear language and offers some potentially useful ideas.

    For example it suggests there may be links with iron deficiency in the brain, or that late night stimulants (tea, coffee, alcohol, tobacco) might aggravate it. And there are other suggestions raised by research ; it's worth a read.

    I mentioned earlier that mine has diminished since my sah, and now it begins to look obvious why...................I was a smoker pre-brain injury but, naturally, when in hospital I couldn't smoke and have never smoked since.

    So simple yet quite possibly the explanation ! I need to stop drinking tea late at night, but that would be really hard. :o

    Have a look anyway if you find time ; there's other interesting stuff about medication amongst other things.


  • Hi everyone forgive the group reply but I find doing stuff on the computer a bit difficult so I try to minimise it as much as possible.

    Danslatete (an interesting and witty French name!), sounds like you've got RLS. I can't remember if I've seen the site that Cat has mentioned but you should look some of them up. I found rls-uk which is a charity for sufferers and has some incredibly useful information about the wretched condition. It's not exactly a twitch or jerk, more an inability to be still and an unpleasant crawling sensation. The arm that has joined in since the bleed has been really unpleasant and I keep rubbing it, looking like a deranged Lady Macbeth

    My daughter in law just sent me details of an American site called the National Sleep Foundation which is also very interesting. Gabapentin seems to be their top drug. They have links to some cutting edge research too. I'm just going to have to go back and see the GP. I do all the normal stuff to try and help. Funnily, I was a smoker prior to the bleed and have now stopped but it's definitely not had the same effect as it has for Cat - though I'm delighted for you. I'm mostly on decaffeinated stuff but have never had tea after about 4pm and coffee is never after about 2pm.

    I saw the neuropsychologist this morning and took my partner along with me as he's feeling that he's living in a vacuum in terms of being given information or support. We're both really well educated (he has a science background so the language isn't strange) and articulate and it's still a struggle to get clear information. She basically listened to us and then made soothing noises! There was one session where she wrote down a summary of what we'd said - I'd have forgotten it all within about 15 minutes - and that proved to be very useful in helping us to work out coping strategies for the changes that I've experienced since the bleed. She did also say that 3 months was very early stages and it's only about 6 months that people start to feel there's been any real improvement. Regardless of the 6 month thing (I know every injury is different), I do wish somebody had said clearly just how long it could take. It was probably only last week that I finally accepted what a long haul it's going to be.

    Does anybody else have a bit of an issue with how to describe what happened? Subarachnoid haemorrhage is a mouthful all the time and bleed seems weird. I think maybe it's part of coming to terms with it. At times I call it the event, which seems overly dramatic but I suppose it was rather dramatic.

    This has been very long and I appreciate everyone's tolerance. If I find anything useful re RSL, I will post it on here. Best wishes to all



  • hello again it's been an odd week. Last Monday and Tuesday were absolutely horrendous (the stuff on RLS above explains a lot of it); the disappointment at just how useless the neuropsychologist was at the last visit - professional 'listening' of the worst sort; realising we really were on our own in terms of making sense of everything, seeking out information and demanding appropriate treatment. I saw a post on a different thread from someone called Jekyll and Hyde - this past week I've flipped from sweetness and light to caustically, sarcastic and angry in seconds. Even if the angry words stay in my head, my body language may just as well be the words. That's just as quickly followed by tears pouring down my face and some serious sobbing. I hasten to say that this is NOT what I was like before the bleed!

    However, trying to be a wee bit positive for a change, finding this website has been indescribably helpful because of the information on it. Joining this forum has been good. I've never been one for on-line chatting but it was so nice to hear from other people that I'm changing my mind (at least for this). I think that if I come on here, it'll give my poor long-suffering partner a break.

    Also, the amitryptyline for the RLS had ceased to be as useful (I think I was taking 40mg a day to get any kind of effect) and of course you've got to wean yourself off them, not just stop, all the while with symptoms that were getting more and more constant throughout the day and night. However, to go back to positive stuff (does anyone else get really easily sidetracked? It's a bloody nightmare and half the time I forget what I was doing before I got sidetracked. At least writing has the advantage of being able to reread what you've written.) my partner and I did masses of talking and dissecting of what's been going on in light of all the new information I was gathering last week. Also, I signed up to a mindfulness website called Headspace. I'd been told about it before when I was signed off work with stress and depression but hadn't gone beyond trying the freebies. It all sounded very reputable and I really liked the guy's voice so it was just motivation that was missing. I realised that it may be helpful in my recovery because I find it very, very difficult to switch off and just let my brain be so I had another look at it and this time went for it. It is indescribably soothing and it just works for me in the state I'm in.

    So, there's been all the new and useful info, finding other people on this site, the mindfulness app, reintroducing the sleeping tablets (we agreed with the GP that if I'd be sensible and take regular breaks, he'd keep me supplied!) AND being prescribed Gabapentin for the RLS. I've done the guided meditations every day plus the sleep one at bedtime and an extra 10 min one before the sleep one and I haven't been as relaxed for ages. I haven't had any troublesome twitchy legs during the night though there was one night where it was a bit of a nuisance but not all night long (in my book that counts as pretty brilliant!) and I've slept like a log. Yes, there's been a bit of a druggy hangover in the morning but do I care? I'm not going anywhere these days so what the heck - a tiny price to pay. Will it last? Who knows but I'm grateful for everything that stops each night being hellish with the problems that causes for each day. Maybe some of this will help someone else.

    All the best


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