Charza Posted February 1 Share Posted February 1 Hi all, this forum has been the most helpful in everyone's kind sharing of information and experiences for me to better understand what actually happened to me. The emergency care was amazing, (UK resident) but feel like there is minimal follow up support and just left to find own way with symptoms and management after discharge. I feel so lucky with having a bleed without the anneurysm - although there was an extensive bleed, no cause found. I had 3 lumbar punctures for pressure management and was restarted briefly on nimodopine for vasospasm during my 2 week inpatient stay. I think I am recovering really well but having major sleep issues. I have developed ongoing issues with jerking limbs everytime I fall off to sleep that start with a single limb - usually an arm/leg but progresses to all my limbs and sometimes feels up my back and neck too. Then the affected part feels all tingly for a bit. It doesn't hurt, but they can be quite powerful. I don't actually have an issue with wanting and falling asleep but he jerks wake me up every time. I often can't finally get to full sleep until around 4am. So this impacts on everything else the next day. It also makes my tolerance for frustration and petty annoyances at an all time low - yikes! I have been practising all the good sleep hygiene advice and over the counter antihistamines and chamomile teas etc. I have noticed that if I drink a glass or two of wine I actually sleep better, but don't want to end up medicating this way. It is really difficult to speak to a GP and the neuro nurse has told me I am discharged from her service and these symptoms aren't from the SAH just coincidental timing. Has anyone else had issues with their sleep and managed to resolve them? Thank you for taking time to read this, wishing every single one of you positive vibes and the very best in your recovery. 3 Quote Link to comment Share on other sites More sharing options...
ClareM Posted February 1 Share Posted February 1 Hi Charza and welcome to BTG. Sorry to hear about your bleed and also about your sleep issues. I too suffered a NASAH but have not had sleep issues since relating to the bleed. My sleep issues are related to stress that I am prone to now. Possibly a chat with your GP would be helpful as suggested by the Neuro nurse, it is getting easier to make doctors appointments now. You don’t mention how long ago your bleed was. If recent, it could still be the blood dissipating down your spinal column but you should get it looked at. Take good care and come back to let us know how you get on Clare xx 1 Quote Link to comment Share on other sites More sharing options...
Charza Posted February 1 Author Share Posted February 1 Hi Clare, Thanks for taking time to reply. I had the bleed just under 3 months ago. I had some jerking in the hospital and sleep was so disrupted due to all the meds and checks, etc. They became more regular about a month from initial bleed. Quote Link to comment Share on other sites More sharing options...
Skippy Posted February 1 Share Posted February 1 Hi Charza I suffered from exactly the same and it was down to the medication I was prescribed for after care. For obvious reasons I can't state which one, but as soon as I stopped taking them, the jerks stopped too. Talk to your GP if you're taking pain meds and you think they might be having a side affect - they may be able to prescribe something different. 3 months is early in recovery so it may have nothing to do with meds etc, but definitely get it checked out. Quote Link to comment Share on other sites More sharing options...
ClareM Posted February 1 Share Posted February 1 As Sami says 3 months is still very early in your recovery. Make sure you drink plenty and get as much rest as you can. I do think you should have a chat with your GP though to put your mind at rest. Take good care and keep us posted Clare xx 1 Quote Link to comment Share on other sites More sharing options...
Mrsherring Posted February 22 Share Posted February 22 Hi Charza I am sorry to read about your experience. I had a NASAH on Christmas Day 2022 with no specific cause. I'm doing fairly well physically but the emotional / mental side is tough as I am also in the depths of menopause. I haven't experienced the jerking you speak of, how horrible for you and sleep deprivation is awful. I can't see when you experienced your bleed but I am going to assume it was fairly recent. Whenever it was, please speak to your doctor as there must be something they can do to help, even if it is temporary assistance with sleep medication - not wine! Same You is an excellent charity - there might be something on there to help you with, here is a link. https://www.sameyou.org/resources I am sure you have heard it before, but be kind to yourself and treat yourself with love and care. Best wishes, Anne x Quote Link to comment Share on other sites More sharing options...
Charza Posted February 22 Author Share Posted February 22 Hi there Anne, thank you so much for taking time to reply. I hadn't heard of Same You, so that is a really helpful resource, thank you again. It has been 3 months since the NASAH for me and sleep issues since end of Dec. Have a GP appt Monday so will see how I get on. I was in hospital for 2 weeks, but got no info on anything when I left. Take Care too xx Quote Link to comment Share on other sites More sharing options...
Skippy Posted February 22 Share Posted February 22 Hi Charza Totally sympathise with the jerking awake. Mine was caused by the meds I was put on for the pain. It might not be the same for you, but it's worth asking your GP - I was put on Tramadol and it didn't agree with me at all, so the GP took me off it. Don't stop meds prescribed by your GP without their say so, but definitely speak to them. Quote Link to comment Share on other sites More sharing options...
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