Fatigue seems to be something that all SAH survivors experience on Behind the Gray, to a lesser or greater degree.
The definition of Fatigue - Fatigue (also called exhaustion,lethargy, languidness, languor, lassitude, and listlessness) is a weariness caused by exertion. It can describe a range of afflictions, varying from a general state of lethargy to a specific work-induced burning sensation within one's muscles. It can be both physical and mental. Physical fatigue is the inability to continue functioning at the level of one's normal abilities. Mental fatigue, on the other hand, rather manifests in somnolence.
Somnolence (or "drowsiness") is a state of near-sleep, a strong desire for sleep, or sleeping for unusually long periods (c.f. hypersomnia). It has two distinct meanings, referring both to the usual state preceding falling asleep, and the chronic condition referring to being in that state independent of a circadian rhythm.” (Quoted from Wikipedia.)
Many SAH survivors on this website, would agree that the fatigue factor, does slowly improve with time, but many survivors still seem to experience fatigue many months and years after their SAH and still consider it to be problematic in their day to day life.
Many would also say, that they haven’t returned to normal levels of activity since their SAH and that when they have increased periods of activity, they then have to make allowances, either by making sure that they have a period of rest before the activity, or that they can allow themselves a period of rest after the activity.
The level of fatigue can also depend on other factors, such as whether we are experiencing depression, anxiety etc.
The reason for the continuing fatigue that many of us suffer following a SAH is still not entirely clear. The bleed is often around the area of the Pituitary gland and Hypothalamus, hence, posing the question of a possible endocrine dysfunction. Hopefully, more research will be carried out in this area, as it's clear that many SAH survivors would benefit and enjoy a better quality of life post SAH, if the fatigue issue could be helped, even if it couldn't be entirely resolved.
(I would also advise any SAH survivor, to visit their GP to rule out other possible causes, if they feel that their fatigue is excessive or worsening.)
Individual accounts of fatigue from Behind the Gray members can be found below : -
Sami – “I used to get the fatigue quite badly in the beginning ... my turning point was my first holiday after my SAH - a year later. It was the first time that I didn't need to sleep during the day and I haven't really since a year on.”
Evelyn - “I still suffer with a lot of fatigue, pain and weakness, even after 3 years. My pattern of sleep has undergone changes. At first, I couldn’t sleep at night and I would only get 4-5 hours in the morning and I would take naps. Now, I have times, where I will sleep 10-12 hrs or it can be 6-7 hrs. When I have a long sleep, I can have very vivid dreams. I no longer need to take naps during the day, but sometimes need to sit and vegetate for at least an hour, if say, I’ve gone shopping. I don’t like anybody talking to me during that time, it makes me feel irritable.”
Janet – “I used to get it a lot in the first year. I do still get it now and again and had a bad case in August, which was why I cut my hours at work. I think it’s not listening to my body and letting myself get overtired ... stupid I know, but sometimes I just push myself a little too hard.”
Keith – “Fatigue is about the only legacy I have from my SAH after 2 and a bit years. It got better up to about a year, but even now, the fatigue still hits me pretty hard sometimes and it takes me much longer to recover from it. My sleep pattern was all over the place following SAH. You couldn't really call it a pattern ... more like random snoozing. The feeling of overwhelming tiredness could come on quite suddenly sometimes. It was probably about 3 months before it got back to anything like normal and I still needed a short nap in the daytime on most days. I've never been one to need much sleep and generally 6 or 7 hours a night is enough and that’s how it was pre SAH as well."
Laura – “I agree with Janet about pushing ourselves too hard. I do suffer with fatigue quite often and sleep for most of the weekend. I am working full time though.”
Karen – “Well, I still get the fatigue and I'm now 3 years and 4 months on. It's got better and better, but I still have days when it's overwhelming and can't do late nights anymore. I definitely need more sleep, but have noticed that I wake up quite a few times during the night and it's extremely rare for me to go through the night without waking at least once. Vivid dreams are also quite frequent. I no longer need to take a nap during the day. I do have to take the odd “chill out hour”, where I will sit quietly and switch off and like Evelyn, if anybody talks to me during that time, I get pretty irritable!”
Elaine – “My Mum Maggie is permanently tired six months on during the day and goes to bed 8.00 p.m. most nights.”
Yasmin – “Fatigue the bain of my life... some days I could just lay down where ever I am and sleep, only those who have been through this, can know what I mean. But 2 years post SAH in Jan 09 it’s so much better and sometimes, I can go for a few weeks before it hits me, I have learned to accept it now though it’s just part of the new me, nothing wrong with that.”
Jess – “I still suffer fatigue 6yrs on ..... but, not that often now."
Caroline – “I am 6 months post SAH, I was fatigued for the first few months after coming out of hospital. Now, I don’t very often sleep during the day, but always sleep well at night from 10 til 6. I haven’t started back at work yet, but expect to be tired then. I have got a bit more energy for doing things now.”
Myra – “I am 8 months post SAH. I still get the fatigue and have been told by the Neuro Surgeon it's something that I will have to come to terms with. I get tired doing even the smallest things. I do take naps during the day. The biggest problem is the nausea during the night and I’ve actually been sick. During early recovery, I was having problems sleeping, the hours were so erratic. I was scared going to sleep as I had my rupture about 2.00am and it took a long time not to think about it especially in the exact position that I was sleeping.”
Tina – “I am 11 months on since my SAH and I do suffer with the tiredness...sometimes more than at the beginning...maybe because I am trying to do more and my brain is still mending!"
Vivien – “I am 18 months on since my SAH and still have problems with tiredness, it just sometimes hits me and all I can do is lie down. However, it is slowly improving and I can recover from just a half hour rest ( not always, sometimes I rest for a whole day to recharge) I also still have problems sleeping but I now sleep for longer than 2 hours at a time and I have had the odd 6 hours in one go!”
Julie C – “I'm 9 years post SAH and I still suffer with fatigue, not as badly as in the early days when I needed to sleep most afternoons, but if I get an energy burst I'm sure to suffer for a few days after. AND.... we've been home from our holiday 9 days and I'm still struggling with "jet lag".... Mark was back at work the next day, I took an extra few days off.... but hey ho!”
Anne Fleming – “I'm almost a year post SAH (next week). My tiredness has improved over the past couple of months. I'm working full time and I can go out 3 or 4 nights a week, though I don't stay out late. I definitely don't have the stamina I used to have, but hoping it will improve.”
Ann – “I am 10 months post SAH and the fatigue got gradually better until the 6th month, then I hit a plateau which I have not moved on from. Prior to SAH I could walk 3 or 4 kilometres followed by a 100 length swim, then go to work in the afternoon and out in the evening. Now I cannot do any of those things on their own in one day. I can now EITHER go for a short swim, about 15 lengths, or a short walk, or half a days work or do the food shop but when I try to do more than one thing in a day, I can't do anything for the next day or two. Even if I do half a days’ work, I can't do it 5 days a week, only 2 or 3 half days. All I want to know from medics is .... is this the new me I have to accept or will it improve?”
Michelle C – “My SAH/stroke was 13th Nov 07 and then recoiling done 24th Sept 08. I used to nap during the day which I needed, although shattered, I then had trouble sleeping at night. I don't nap or try not to, during the day now, as I sleep a bit better at night. I seem more fatigued now since the second recoiling. I seem to have an energy burst mid morning, which probably lasts about 1-1 half hours, then I have to sit down most of day.”
Sarah – “Fatigue is a major factor for me. I don't need to sleep every day now, but at least a couple of times a week. Sometimes it's so debilitating that I can do nothing but sleep. I think the two lots of surgery exacerbated the fatigue. Surgeon says it will always be there, but may hopefully improve a little. It's the one main thing that I worry about regarding working full time again.
At night I am going to bed much earlier, generally, usually around 10pm and get up at about 8am but I will have woken at least once, usually 2 or 3 times, in the night which I never used to do. I also have a lot more vivid dreams than I did before."
LesleyM – “I had my SAH two years ago and I still get very mentally fatigued. I think this is because I have to concentrate so hard when doing things. My physical strength is much improved."
Louise – “I seemed to level off with the fatigue and then in the 3rd year of my recovery, I seemed to improve again .... Just when I thought that was that! When I first came home from hospital, I was on anti seizure meds, so I would sleep all day if you let me, then when I came off them, I found it harder, now it all depends on what's going on. I have a good couple of days then pow!!! I can lie awake for hours, it's a vicious circle.”
Shelscha – “I had my SAH June 2007 and then another brain surgery August 2008, which caused a stroke. Fatigue is still one of the biggest things that I have a problem with. I do not fight it and when I feel I need the sleep, I let my body have it. I still sleep a good 10 to 12 hours a night and it seems that every couple of weeks I have a weekend where I also sleep a lot.”
Shiree – “I am just over 8 months on from SAH and did not really suffer too badly with fatigue. I am not as energetic as I was, and am guilty of having an energy drink in the middle of the day (nearly every day) which helps. I never had to have afternoon naps, but I go to bed about 9 - 9.30pm every night and now the nightmares are not as bad, I usually sleep well.”
John –“I am nearly 3 years post SAH and have suffered fatigue on and off all the time. It has got considerably worse recently but as you will see from my new post there is a very different reason.”
Andy H – “Heather still suffers from fatigue and we are 3.5 years into this. It seems to come in cycles that cover a 2 month period. For 3-4 weeks she will be up and busy with little to no extra sleeping during the day followed by a period of light naps during the day to full blown snore outs on the couch!”
Prue – “As the weeks have gone by, I have felt more tired, than I was at the start. Okay, I know it’s early days for me, 7 weeks and I have a longer way to go.... It does frighten me now, to even dare to think about it, especially at the age of 70!”
Janet Walker – “I still suffer from fatigue, now 3yrs and 2 months following the SAH. Work full time, I just have to pace myself, but frustrating at times.”
Sarah C – “The tiredness factor is still a very big issue for me nearly eight years on. I do really think that in all this time, I have not had one day, where I do not feel tired and like a lot of people that have had a SAH, it is NOT like just feeling normal tiredness, it is overwhelming. I have to quite often go for a sleep in the afternoon; it actually gets me down quite a lot, as before the SAH I was always full of energy and hardly needed any sleep at all.”
Perry – “I am certainly a victim of post SAH fatigue, it is early days I know, only seven months since I had the SAH, but fatigue is a major factor! I sleep very well at night (for the first time in my life!) something in the region of ten hours or more and then can sleep for several hours during the day. I too have energy bursts, which last for about one hour or so and then I crash and have to sleep again. I hate it! I was very energetic ,so am finding it very hard to accept! I have just been referred to the Brain Injury Team. Yesterday, my Neuro Physio said that she could and would refer me to their sleep therapist Yay!!”
Lesley – “Fatigue was a big problem in the first few months. I had to lie down after completing a few tasks say like having a bath or washing my hair, washing up etc.It gradually improved over the months. The past 2 or 3 months have noticed I've had the odd day were I've not needed my 4:00 pm nap and gone straight through until bedtime (watching TV or reading in the evening though - not running around). But still think the bad heads and fatigue are affected by the weather were I'm concerned. Bad head today and very tired and its low grey cloud overhead.”
Cal – “Jim still gets fatigued. He suffered his SAH 12-1-07. 9 days and one year has passed. We did finally get an appointment to see a neurologist. Jim has had an MRI which they said seemed fine but wanted him to also have an MRA so they could use the dye in order to ensure everything seemed fine since he is still very tired all the time.”
Zip2me23 – “I am always tired just in varying degrees since my SAH and it has been about 19 months now. I had completely lost the use of my right side so I guess I should be thankful to be up and around. I feel like my brain gets an overload very easy and my legs will feel like lead or I am trying to walk on someone else’s at times which I am having a real hard time with at the moment and it really upsets me. I think it is in the back of my mind when I having this problem that, even though I know it won't, that they will just stop working!"
Dee Woods – “I know it's only been about two months since my SAH, but l really do suffer badly from fatigue if I go into town for a couple of hours then that’s it for a couple of days.”
Matthew – “I had a non-aneurysmal SAH on March 1st last year, so 21 months ago. I don't get fatigued very much now, but every so often (usually at the end of a week) I simply have to sit down and stop. I need time in which to do absolutely nothing (and, bizarrely, feel guilty about it afterward). That takes about half an hour or so. I also crave peace and quiet! ... difficult with our 22 month old, but achievable.”
Terry –“I am six months in and the fatigue is daily. Each time I go to the Doctors I complain that I am sleeping too much. 10 to 12 hours a night and a 2 to 3 hour nap in the afternoon. I think my depression is only making the situation worse.”
Paul – “Since my main stroke Dec 2005, fatigue has been a very major factor in my life since, causing big upheavals at work and home. The more you try to fight it, the worse you seem to get. I am currently still under hospital guidance for this problem and i was told today that I should not work full time again whilst having this fatigue. I tried too hard this year and ended up in hospital for 7 weeks, so I have to learn to relax.”
Leo – “I too suffer from fatigue. It's been nearly a year now (on New Years Eve) and I still have headaches most days, but the really severe ones aren't as frequent. I sometimes feel like it’s one step forward, two steps back, because good days (where I almost forget about the SAH) are followed by a huge crash - my head feels like it is going to explode and I can barely move with fatigue. On those days my head feels almost as bad as the weeks immediately following the coiling and I get really, really scared.”
Tekemeee – “I had a non-aneurysm SAH on July 26, 1993 - I was in the hospital for 23 days in NICU. My major complaint afterwards was being so tired - I had some people tell me that it takes so long just to recuperate from being in the hospital and not being able to move around. It took at least a full year maybe a little longer for me to be able to stay awake all day and not be so tired - I didn't have anyone to talk to back then so I had no idea that this was normal. I wish I would have found this board 5 years ago.”
Lucie – “I still get tired 3 years on, it's all about learning how best to deal with it, like early nights and looking after yourself. Slowly but surely it gets better!”
Vaughan – “I had a SAH coiled in 2005 and a re-bleed in 2007 that was re-coiled. I found the chronic fatigue that meant I had to stop and have a sleep had more or less passed by the time I went back to work six months after the bleeds. But I do still get tired (like most people who work and commute!) and I find the best way of managing my fatigue is to take regular short breaks from work. I am in the fortunate position of being able to take a week off every 12 weeks and do so. If I stay at work more than 15 weeks without a break I get really tired: I feel I am dragging myself out of bed and haven’t much energy. I also find that sleeping in on Saturday mornings helps recharge the batteries."