julie.1

Thanks everyone, It sounds like this is a familiar problem then......I think I will just stop worrying and accept my sleep is a bit more disturbed at the mo. Its just frustrating to be tired and not manage to get proper rest. I think I might try having short sleeps at night and get up if I'm just lying there. I'm trying to drink 3 litres a day, its helping with the headaches I think, so maybe the sleep will come next. Thank you all! Julie xx

Hi, I'm sure there must be a thread somewhere on sleep problems, but I can't find it! Since coming home from hospital my sleep has been all over the place - I could sleep all day some days, but not settle at night. Other days I can't sleep apart from cat naps through the night. I've tried the usual things - regular getting up and going to bed times, no caffeine, cool room etc, but little success. At times I feel absolutely exhausted, but sort of restless and agitated at the same time. I can't seem to settle - is this normal after SAH? Any tips/ advice appreciated Julie x

Hi Desy, I'm not surprised you feel scared and desperate with all that going on! It's quite early days for me and I really recognise the feelings of fear and confusion - luckily I am not having horrible seizures like you, but sometimes my legs go, or I feel really low or confused out of the blue. It's frightening when the Drs can't seem to give any advice or diagnose what is wrong isn't it? I also recognise that feeling of just wanting to lie down and not move again. I had it really strongly when I had my SAH and now sometimes I feel it because I have a kind of sea sick feeling. I think it is really good you are coming on here to express how you are feeling. I have found some amazing support and advice from other members and feel much less scared (BTG is my kind of security blanket for now). Saying you feel desperate does not mean you will necessarily act on those feelings, and having others who understand and can come alongside you can really help when you feel so low. Wishing you well for now and hoping things feel better soon, Julie x

Hi, It's a weird thing isn't it - I get frustrated when I don't improve and frustrated when I do, because it's never enough... I'm following the many wise words on this site though and celebrating each milestone, no matter how small. If this had never happened to me, I would still be taking it all for granted (can't go so far as to say I'm glad it happened though!) Win - the thing about the wheelchair is that it was great to send it back, but walking is exhausting and people stare - I'm thinking of having a tee shirt printed "no I'm not drunk". At work people kept trying to help me up, catch me if I wobbled and help me up and downstairs (whether I wanted to go or not!!). I did quite well - didn't swear at anyone, didn't fall, until I left the building at the end of the day and promptly fell over my own feet Jxx

Five weeks on and here are some things I am happy to celebrate: Sending the wheelchair back to the shop Having a bit of appetite back and eating 'normal' meals with my family Being off the drugs (except a bit of paracetamol and occasional tramadol) Walking (more like staggering at times, but hey...) along the sea front to buy ice cream! Being able to get up from a chair without help Taking a shower in private Being in the garden with my family Managed a day at work yesterday, but am shattered and not too good today. It was an achievement none the less! Still got plenty to work on, but I'm learning to be patient and pleased with progress so far The one thing I've learned from this site is that we are all recovering differently and at very different speeds. It's a bit like the kids at Christmas with 'how many sleeps til Santa?' - I wonder how many sleeps until I can drive again, exercise again, have the energy to socialise again...... Just for now it feels enough to still be here and able to enjoy the sunshine on my back Julie xxx

Thanks Paul, I'm due to see the neurosurgery team on 9th September, so maybe I could ask them then? I get the smell if I am tired or stressed. My whole sense of smell has changed, but this is a particular smell that happens before my legs go 'thunderbirds' on me.

Thanks for the support guys! Win, its strange but when I get stuck singing or music get me going again. Perhaps I should do it in public and care less what people think!! Wem, your message made me cry (add emotional to the list!). It reminded me of a lady I met in hospital with very severe health problems and in lots of pain. She was in the next bed to mine and realised I was really scared one day when I was having some treatment, so she wheeled herself over to my bed and stuck her hand through the curtain to hold mine. I will never forget her kindness. You are both right though, I will be proud of how far I have come and just build in some safety measures in case I get stuck when out and about. Julie x

Thanks Win, you're right! I've spent the last month being told it's surprising I survived, so I need to get this in perspective. It's just so weird to be able to move one minute, and then not the next. I think I'm feeling a bit angry because I just want to shout at people because they can't see what is wrong. I'm able to joke about with the family, but it's a bit scary outdoors!

Hi, Just wondering if anyone else gets much more wobbly on their legs if they get upset/ emotional? I thought I was getting more steady on my legs and getting 'stuck' (where I just can't make my legs move) less often, but tonight after a review with my GP where I got upset, I found it really hard to walk and my legs felt like they were giving way beneath me. I got home with help, but maybe I'm not recovering as quick as I thought? Its embarrassing because I look like I'm drunk and can see people looking. I also seem to get a strong smell of burning when I'm stressed. Any thoughts/ advice? Maybe its just in my mind (I was going to say 'head' then realised it IS all in my head!!) Julie

Hi Sean, I'm new here too. I had my SAH on 22nd July with no cause found. I was at the gym with my young daughter when it happened. It's really confusing and frightening isn't it? You get given this terrifying diagnosis, admitted to hospital ( in my case neuro HDU then ward for 2 weeks)......but no information! I was repeatedly told I was lucky to survive, but not out of the woods yet, to take it easy etc etc, but no one could tell me what take it easy meant, how much better I would get, or even what I definitely shouldn't do - especially re exercise. My first week home I was mainly using a wheelchair, needed help with stairs, showering etc. Last week I could walk short distances and manage the stairs on my own. Yesterday I managed to walk for about 30 minutes, but my legs go all 'thunderbirds' and refuse to move after that! It sounds weird, but it was windy and it took a lot of concentration to keep my balance whilst coping with an extra source of distraction! I'm trying to listen to the senior members on this site and sleep when I need to and not beat myself up too much but it's hard and there are things I just can't do yet. I can really relate to the feeling scared thing, I'm 44 and have a lovely husband and 2 children - I'm not done with my life yet! It sounds like with SAH where there isn't an aneurysm it is rare for it to repeat...but I guess it is too early for either of us to believe that yet. I really hope you get some information - one of the members on here suggested I spoke to the specialist neuro nurse and I have a follow up to ask her questions soon. Maybe there is someone like that where you are? Hope you are soon feeling better and home with your family best wishes, julie

Thank you everyone for the lovely responses, I feel much less alone now. It's so strange to go from completely well to so ill with no warning. The world feels completely upside down. I'm trying to do bits and pieces, but my body feels really weird and disconnected like I'm a Thunderbirds puppet! Everything smells weird too..... I'll keep logging in and reading, it's been really helpful to read other people's experiences especially as recovery from SAH seems to be such an unknown quantity. Thank you for all the support once again. Julie xxx

Hi, After a lovely relaxed weekend with my family I experienced a SAH whilst at the gym with my daughter (14yrs old). I hadn't begun to do much other than a warm up, but felt like I had a headache coming on. As I commented to my daughter the headache became much worse and she helped me get outside and sit on a bench, by this time I was shaking and finding it difficult to talk. Luckily we live very close by and my husband came to get us in the car. I could not stand upright by this time and started feeling sick and very dizzy. Its all a bit confused from there, but I was very sick and complaining my head was agony. My husband called 111 and was asked to take me to a GP walk in centre for an appt in 2 hrs . I think I knew something was wrong because I asked him to call 999 - unfortunately they would not send an ambulance out (I think because we had spoken to 111 and had apt later?). They kept asking if I had stroke symptoms, but I didn't fit the usual FAST signs, so no one seemed to suspect haemorrhage. My husband and daughter man-handled me into the car and got me to the hospital but I couldn't walk by then or stay sat in a wheelchair. Was sent to see the GP clinic and given pain and sickness injections, then sent to A and E about an hour later. I don't remember much of this, but my poor daughter and husband were trying to move me all around the hospital in a wheelchair whilst I was very poorly and couldn't stay sat up. I had a CT scan in the early hours of the morning (my first symptoms were at 3.30pm) and was sent to a ward for observation overnight. I honestly thought I had suffered a severe migraine, or stomach bug and would be going home. I remember saying to my husband it couldn't be serious because they would have told us sooner and no one seemed to have taken my symptoms that seriously since I arrived. Then the Dr came and said I had suffered a bleed in my brain and would be transferred to another local hospital that had a specialist neurology dept. I was admitted to the neuro HDU at about 4 in the morning feeling scared and confused. My husband was told the situation was very serious, but I don't remember being told anything much. I spent two weeks in hospital and have now been home for a week and a half. Coming home was really frightening and I just didn't feel like 'me' anymore. My poor kids and husband are still very worried and traumatised and I am still feeling really shocked. From what I understand I had an unexplained SAH with no aneurysm, so no surgical treatment. Have just finished 21 days of Nomidopine. I have had very little advice about what to do/ not do now. Found this site when trawling the net looking for some information and support. Hope I have done this right and posted in the right place, haven't used a site like this before and my mental faculties are not sparkling at the moment!