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Showing results for tags 'fatigue'.
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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. -
National (US) Brain Injury Awareness Week: Just in case anyone is interested, Arden University is putting on a few open lectures this week as part of Brain Injury Awareness Week (in the US not the UK to avoid any confusion!) . I have been invited by one of their lecturers (a friend of mine and one of my former occupational therapists) to participate in one of the sessions to give a personal perspective to Acquired Brain Injury (ABI) and particularly the impact of fatigue post ABI. The sessions are open to anyone to watch/listen to online but you need to register in advance. The session I am speaking in is on at 11a.m. on Wednesday (16th March'22) this week and this is focussing on Fatigue: causes, what it is like to live with and how to deal with it! See link below for more details and registration. Sorry I'm posting this a little late, but there are four session before the end of the week that might be of interest to people: 1. Fatigue and the brain (Wednesday 16th March, 11:00 – 12:00 GMT) 2. Stroke, attention, and emotion regulation (Wednesday 16th March, 13:00 – 14:00 GMT) 3. Working in the acquired brain injury sector (Wednesday 16th March, 14:00 – 15:00 GMT) 4. What's going on in there? The science behind neuroimaging methods (Friday 18th March, 13:00 – 14:00 GMT) These sessions are open to all and not part of Arden's courses, not a commercial, but a social enterprise organised by their students. (so I hope you don't mind me sharing this here!). Hopefully some of this might be of some interest to people. Hope you are all well, it seems a long time since I dropped in to say hello to everyone here. Best wishes Greg, https://arden.ac.uk/knowledge-base/latest-news/arden-activities-for-brain-awareness-week?source=google&medium=cpc&campaign=ArdenBrand-ShortTail-UK-Exact -
Hello, my name is Sara and I had a ruptured cerebral aneurysm in June 2020 at 38 years old. My fiancé found me on the floor, I had fallen into my computer and had 2 black eyes. He called an ambulance but I was apparently with it enough to talk them out of taking me, and had my fiancé do it. They followed us and also later came to check on me in the hospital. I was in the ICU for around 40 days, but have since regained my ability to walk, speak, write, drive, and return to work. Thank goodness for all of the wonderful doctors, therapists, and family support I had, I know I was very lucky. I am curious if anyone has any tips for managing brain fatigue? I take vitamins and get sleep but it never feels like enough. My doctor tried to prescribe me medication for the fatigue but insurance won't approve it since I do not have AHDH. I told one of my therapists that just trying to mange my prescriptions and follow up appointments was some serous therapy in itself 😄
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fatigue What is Post Stroke Fatigue?
Eruditedk posted a topic in Subarachnoid Haemorrhage Discussion
Good morning, I hope everyone is feeling well, its sunny outside in the UK for a change, we are all happy to be alive... Genuine question in need of explanation please.. What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating I suffered my SAH at the end of January, I was told I would suffer lower back pain as the blood dispersed but never did... I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little.. Then a month ago I had to move house and the old me kicked in and my fiancé and I did the move ourselves, packing renting and driving vans unpacking the whole thing and although I was tired we got through it.. Then trying to settle I decided 3 weeks ago to buy a greenhouse on ebay, it was an incredible deal but 2 hour drive to dismantle it so I booked a van and off we went at 7am A strenuous 14 hour day plus 4 hours driving and a greenhouse in peices is in our new garden Since then, I feel like I went 12 rounds with Mike Tyson... I hurt everywhere from my toes to my nose.. aches, pains sore and it will not go away... it has lessened a bit in 3 weeks but I am still feeling quite broken and don't know what to do with myself... I had always been very physically fit and strong with incredible recovery powers... Is this Post stroke fatigue..?? Did I just break all the rules and advice I am reading on this forum of being good to myself... Is this the way my body will behave if I push too hard.. for the first time in my life I feel my age and its really depressing me My doctor admitted she knows very little about SAH and the recovery process, she has called me in for blood tests on Monday so see if I have infections or viral markers.. I have increased my fluid intake and have done next to nothing in 3 weeks, the greenhouse is still in pieces in the garden like it's mocking me for being weak Should every part of me hurt after 3 weeks.. apart from not having major headaches I feel worse than when I left hospital 3 months ago... Any advice or thoughts on what I have done to myself or what help I should be seeking please let me know... I am desperate to do things without being busy or being able to self medicate with "herb" I am driving myself and everyone around me nuts.. The one positive if it is a positive is I stopped smoking herb after 30 years of heavy use in a heartbeat... the day my SAH happened was it... so I do wonder if I am suffering other kinds of withdrawal... All ideas and opinions welcome, as said at the beginning the Sun has come out and I want to go out and play, not just sit around like a lump complaining of my aches and pains, that is not who I was or who I want to be... If its sunny where you are I hope you can enjoy your day and the weekend coming.. D x -
Hi, everyone. I'm new here so allow me to introduce myself. My name is Deb, married with 3 children. I had my SAH on July 17th. I was running a bath and at firs just felt a bit odd, like I was watching the bath fill through a fog. I stood to turn on the cold tap and collapsed to the floor when I came around the bath was full! I tried to stand and realised my left side wasn't working, I felt (and heard) a kind of snap in my ankle and fell to the floor again. Somehow I managed to drag myself downstairs to tell my husband. I was then suddenly hit with the most horrific pain in my head and was violently sick. Husband rang out of hours doctor who , after listening to my husband, phoned an ambulance. I don't remember anything else until 3-4 days later. Spent 3weeks in hospital, had numerous episodes of numbness on left side, CT scans and lumber punctures. I was allowed home on the proviso there was someone at home to "look after me" Well, there was but it didn't last! I have a 14 year old daughter who has suffered with anorexia for almost 3 years, I am her main carer and to say her illness is stressful is an understatement. Pretty much straight away I was back caring for her. It's very much like having a newborn, she is currently beginning to recover (finally) and she has a very strict meal plan. So my day consists of watching the clock for the next meal, snack, shake etc. She is home tutored so I have a constant stream of people in and out of my home, between tutors, doctors, therapists etc..... I really haven't had time to come to terms with my own illness, and I just don't have time for me. I am still suffering terrible headache, noises in my head, (probably tinnitus) fatigue, poor memory, among other things and the thought of going out and seeing people fills me with dread. We are going for a meal tomorrow to celebrate me eldest daughter's new job. I am dreading it, partly the being in public and partly because it's my first time to drive, only got my license back yesterday. I look forward to being part of this community.
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The University of Surrey are looking for volunteers to take part in research. If you experienced your first SAH/stroke in the last five years, but have not had a SAH/stroke within the last 12 months, we would like to invite you to take part in a new study. We would like you to tell us about your quality of sleep, and whether you feel it has changed since your SAH/stroke. So what does the study involve? We will ask you to complete a set of questionnaires about your experience of sleep and your quality of life. All responses will be kept anonymous. All participants must be over the age of 18. To take part, please follow this link: http://surveys.fahs.surrey.ac.uk/changes_in_sleep/ To ask for further information, please contact Sophie Light via email at: sl00223@surrey.ac.uk This project is run under supervision of Professor A. Sterr at the University of Surrey. This project starts from the 17/02/2015 and ends on the 05/05/2015. Thank you for your help. (Posted with permission from Admin) -
Hi all - unfortunately I find I havent posted here on BTG since I was still in rehab hospital in 2010. Here's a (hopefully working!) link to my original post... http://www.behindthegray.net/vbulletin/showthread.php?6272-Hi-All-Erin-AVM-Removed-SAH-on-9th-June-2010. Please excuse any typo's - i now can only use one hand when typing and have lost quite a big chunk of vision in the left of both eyes so often miss letters Ive now been out of hospital two years. Physio stopped pretty quickly after discharge so its all been down to me and I do my exercises at the gym when I can, although any slight cough or anything I get now floors me so that has to go on hold while im taking the exceptionally long time i need nowadays to recover! I I was unable to return to my old job in dwp as they wanted me back pretty much straight away which i just coldnt do so i had to take a package. its seen us ok isn and although im still not able to do a regular type job - im hoping i will in time to come. Im building towards it but the physical loss, psychological loss, fatigue and loss of vision side of things (plus many more ill not list!) are making that difficult. About a year ago I set up my own photography business - having ound the time now to explore the things I love and interest me. I enjoy it immensely and have made a few sales but its only a very small sideline really. The problem there really is that I find the sales side of it excrutiatingly hard,; I've lost a lot of family/friends and subsequently confidence since the avm/sah. What id like to do in the meantime is volunteering. Ive already applied to Brain & Spine (got a "we dont take/need volunteers, soz" reply from them - yeah, righto!) and headway which is a bit up in the air but really im getting nowhere! I'd like to help in the brain injury area as I have the empathy and experience but am open to most things. I'm also unable to do much 'physical' stuff but i can get around and mostly get by with just using one hand, but it obviously does have limitations. I still feel I have so much to offer. Has anyone had similar problems or any ideas in what I can do? Any advice / help / anything would be appreciated! :confused:
