julie.1

Hi Megan I had an SAH with no cause found in late July. Due to pressure and financial circumstances I tried to return to work after 4 weeks. I saw an Occupational Health doctor who advised building up from 2 days in the first week to full time at the end of week 4. It just wasn't possible for me and I had to cut back drastically and have been managing 2 days a week up until last week when I did 3 days. It took me from Thursday until today to recover, ready to try it again! I have found I need more pain relief and more anti sickness medication with each day I work as my symptoms are much worse when I'm tired. Things that have helped me: - Drink loads of water (I have a jug on my desk) -Try and find somewhere quiet to take time out, I retreat to my car, put ear plugs in and an eye mask on for 10-15 minutes. This seems to help my brain settle down so I can do the next couple of hours. -I have my iPod at work, if I am getting distracted at my desk I plug myself in! - On work days I take my medication regularly whether I feel I need it or not -I eat small snacks through the day because when I'm tired my appetite goes I can't cope with glare on my computer screen or keyboard, so I have shuffled my desk around. I also found being in large meetings, or more than one person talking at once really difficult at first, but am managing this a little better now. I would agree with Iola, take as much time as you can. The trouble is this isn't always easy or possible. Try to be gentle with yourself and rest outside of work as much as you can! Good luck! Julie x

Thank you lovely people, you are all so kind and reassuring My GP doesn't have full reports of the CTs/ Angio's etc and doesn't even have full discharge info. When I go to the surgery they look terrified, which just makes me feel more scared! My husband has helped me write my questions down in an email and we have sent them to the Consultant at the hospital where I was treated and asked for an appointment. Hoping he will be able to explain/ put my mind at rest. I spoke to a lovely doctor I know who is a friend. She said the only really important thing is that I know what to do/ where to go if I feel the same symptoms again, but that it is really unlikely no matter caused my SAH that it will happen again. I remember not wanting to cause a fuss when this first happened and thinking 'how bad can a headache be?'. I suppose we all know the answer to that now. Its just quite hard to look towards the future when something has threatened it. I feel very lucky to be here, but quite scared too. Am off to do some lovely relaxation exercises at the leisure centre in a minute - so I am listening to you Win and trying to relax! Thank you everyone! Julie xx

Hi Iola, I had one angiogram, I think it was the morning after I was admitted to HDU. The CT was done in A and E, another the day after I was admitted and then about a week after I had the bleed. They said there was a heavy blood load, but couldn't see a source for the bleed. I think I'm just frightened the blood could have been hiding something, or it was an aneurysm that burst, so another one could form again ? Don't even know if that is possible. It's so hard to remember what I was told in hospital because I wasn't really with it. The hospital said they don't follow up NASAH cases because there isn't anything for the neurosurgeons to fix. I had a follow up with the nurse practitioner, but felt like I was wasting her time and was still quite muddled about things. Wish I could stop worrying! Julie x

Thanks Penny, I just can't get my head around a bleed happening for no apparent reason. But I suppose there are lots of other illnesses that do that too. I think it's just my worry of the moment! Julie x

I'm worrying myself round in circles....if you have had a SAH with no cause found, how do you know the drs haven't missed an aneurysm? Could one have been hidden by all the blood? I have had an angiogram, several CT scans and a CT with contrast...but nothing seen. Somehow can't stop worrying though.........:confused: Julie x

OK, so that made me cry. Again. You've said it so well Teechur. I DO feel grateful to be alive. But I also feel angry this thing stole the life I was living, with no warning, in such a cruel way. I feel different, nothing joins up properly anymore, and I am pathetically happy when I achieve the smallest of things. Until July this year I was competent, confident (mostly) and a respected professional. Now I am having to fight to win/ earn my life back one tiny step at a time. I don't feel sorry for myself particularly, I don't especially wonder why me? But I do want to feel I am 'me' again. I am angry and upset when people treat me like there is nothing wrong. I'm also angry and upset when they treat me like something IS wrong. Irrational I know. I'm not sure what my goals should be now and feel like I am floating aimlessly, at the same time I am horribly aware of how fragile and short life can be. It's quite a paradox. Its true, if you have cancer people do 'get it'. You are a cause to fight for, there are multiple charities all competing to support you. Doctors offer you hope. With PMSAH there don't seem to be any answers and for the most part doctors look scared when you ask for advice. I do feel proud of how far I've come since the night my husband was warned he might lose me. The sad truth is he did lose part of me. So did I. The creative bit I need to grapple with, is how shall I recreate 'me'. Answers on a post card please........

Well done BigBlue, there's nothing like a goal that means something to you personally to spur you on! Who cares if other people don't get it, if it motivates you and keeps you moving forward that's ALL that counts Julie x

Hi BigBlue60, I had my SAH in July this year and tried to go back to work way too soon. I did have a return to work plan and was gradually increasing my hours, but I have had to cut right back and am only doing a couple of days a week at the moment. Every time I feel frustrated I come onto BTG to hear the 'it takes time', 'be kind to yourself', 'you're doing so well' mantra and then I feel reassured and less alone again I'm glad you have found BTG, there are some wonderful, supportive and lovely people here. Lots of hugs Julie x

Dogs and Christmas decorations - definitely two things to be happy about Well done Win! Julie x

Wow, well done Sarah, what brilliant news! I'm doing a small celebration dance around my kitchen in your honour! Julie x:-D

Today I let myself have an afternoon nap without feeling guilty rather than trying to last out til bedtime. I feel so much better now I've also tidied my bedroom up.....probably why I then wanted a nap

Thank you everyone! Still a bit down and tearful today, but feel a little brighter overall Good thought Daffodil - I have been going a bit mad at the gardening, I think out of guilt and trying to be 'how I was' before. Have broken down the tasks now into little chunks to aim at every other day or so, but only when I feel physically ok. I think I was sort of punishing myself with it - does that make sense? On the hobbies front I wanted to make a photo wall of pictures that make me happy - kids, dog, husband, days out etc.....so I've got some photos and frames out and am in the planning stages (planning could take some time as I am easily distracted!!!) Iola, think you are right about the blessings. I have wanted a veggie patch for as long as I can remember. Last year we moved to this house and had lots of work to do. Eventually I managed to work on a small patch of garden and plan my veg patch. It was going to be so pretty and so productive. Instead it became a tangled mess of weeds and dead plants. But doing the last bits of tidying I found a handful of green beans to pick that were not too stringy, 2 courgettes, a few tiny potatoes and the smallest green pepper you have ever seen....my daughters helped prepare them alongside the supper they had planned and they tasted wonderful! Thank you for your love and support. It is really hard and seems so ungrateful to express the negative stuff, but I'm afraid it is there just beneath the surface and it is making me sad

Have been feeling quite good lately (I feel like saying that out loud is tempting fate), but feel low and tearful today......Have been having headaches low down at the base of my skull for about 4 days. They aren't as bad as when I had the SAH, but they are exactly the same feeling with less intensity. It's horrible and I'm back to feeling scared again. I know this is a bit pathetic and I should get a grip, but I'm also fed up with being relentlessly positive and pretending everything is ok. I tried to say I was heartbroken about clearing my little vegetable patch yesterday - it all went to rack and ruin when I was in hospital - but the response was 'no you're not' ! It feels like I'm not even allowed my own emotions anymore. I'm going to get motivated in a minute and stop feeling sorry for myself.......

Hi! My heart goes out to you. I had my SAH 10 weeks ago today and think it has been hard for me, but even harder for my family. I have been lucky and am doing ok with recovering bit by bit, but I do remember people talking to me and hugging me, stroking my hand etc when I was quite out of it. One thing that helped me when I was at my worst was when people touched my hand, or squeezed it and said who they were before they spoke to me, also that they made sure I could see their faces. I think in my confused state it gave me a chance to tune into who was there and filter out that they were speaking to me not someone else. I found HDU very confusing and got confused between different snippets of information. I would overhear a conversation about someone else and think it was about me - very scary on occasion! It wasn't helped by being next to the nurses station!! I also found music very soothing, particularly music that brought back happy memories of time with the family. I used headphones and music to block out worries and the noise of other people's visitors! I have found this site so supportive, even on terribly down days when I wasn't up to posting. I try to 'pop in' each day even if I don't have much to say! It is so reassuring to know others understand and are wishing you well even when you are despairing yourself. If I can be of any help to your daughter in Bristol, I live nearby - you can always message me and we can make contact. Stay strong, we are with you. Julie xxx

Hi Susan, Please don't feel sorry for me, I am ok. I was cross that no rehab was available for me to start with. But then I got a grip! I used to go to the gym with my daughter before my SAH (it actually happened there) and about a month after it happened asked one of the instructors to do some personal training with me. He has really helped, setting me exercises to practice and working towards goals etc. My family have been supporting me with practicing. Maybe if I had received NHS aftercare I would not have felt so in control of the goals I set etc. Somehow we all find our own way...maybe I had to get angry to get myself going again? I know when I first posted on this site I just felt terrified the whole time. I'm glad that has subsided a little now....progress. Your words were so powerful I sobbed when I read them, I could relate so much to what you were saying. It's such a relief to be amongst those who understand isn't it? Thinking of you, and wishing you well with your recovery. Julie xxx

Oh my goodness Susan, I couldn't put this into words like you just have, but I can so relate to all that you say! I have also had a NASAH (late July) and been trying to come to some understanding of being told the most devastating, life threatening thing has happened, but also that I should be fully recovered and am very lucky and to 'get on with life'. I don't know how to feel. My walking is also strange, I've been accused of being drunk in the local supermarket at 10 am in the morning (told I should be ashamed of myself). I know that feeling of being 'observed' to see if you are still 'you'. I am told I will recover 100 per cent, but am not entitled to rehab or even a physio or OT assessment. No one asked if I would be ok at home before I was discharged, or even if I had anyone at home to help me. The lady in the bed opposite was recovering from a planned hip operation , had Physio, OT and two car loads of equipment......I am not recovered yet, but there is no help or advice. Most people die when they have a bleed like mine, so what advice can I be given? There aren't many survivors, so there isn't any evidence to draw on it seems. I seem to be greeted by a curious mixture of horror, awe and boredom. My GP is lost and thinks I should be off work 'for a year', but that I 'look better than most people after an SAH'. I'm not sure what I'm supposed to do in that year..... The hardest part has been understanding why the people I care about around me are terrified and would rather I stayed at home in bed all day, but desperately needing to get my life back on track. If I take small steps, I'm accused of 'overdoing it' 'pushing myself' and risking a relapse....but if I do nothing what will that mean? In the end, we have to make our own decisions. Some of those will be good and some will turn out to be wrong. We are an unknown quantity. That is why I thank God for this site and the chance to be amongst others who share these feelings and understand. If I try to take a step, but fail part way, my fellow BTGers are able to see the success in that failure.....I feel them willing me on. I tell myself not to be afraid. Thank you for your eloquent and brave words. Never forget we are here and in this thing together. We have a lot of differences in our lives, our coping and our recoveries, but we have far more in common. You are not alone. Julie xxxx

Well, it was 8 weeks on Sunday.....and I'm still here!! After the dismal stats I was given in hospital that has to be something to be very happy about Also appearing on the list of happiness this week: Fell over twice in one day last week, but when I slipped a third time I didn't fall! Able to exercise gently with some support - was deliriously happy when I jumped without toppling over! Went away to our caravan at the weekend (first time away from home) and wasn't terrified about how close the nearest hospital was Have managed to stabilise my weight a bit and even enjoy some foods again Have learned to take time out to hug my children more and marvel at what amazing people they have become Returned to hospital for a neuro follow up and only cried a bit...... Still celebrating the little miracles that occur each day, so long as I remember to notice them. On the down days and the sleepy days trying to remember my tired brain is doing lots of hard work rewiring itself! Watch out for the new improved Julie......you have been warned

Just seen you are in USA Mary....don't think the UK system is quite so good at fine detail Incidentally, I had symptoms like falling, loss of balance, extreme tiredness etc. The first GP I saw thought my symptoms were not menopause related and I had to see a private specialist to get any answers...

Hi Mary, I had FSH tests done via my GP, but had to ask specifically for it. Apparently they don't test in pathology to tell the difference between low and non existent oestrogen levels - they only test to find a level that shows you are in the menopause. From what I understand this means you could still have low blood levels of hormone but low enough to get symptoms. Julie x

Feeling a bit better after only a couple of days of restarting HRT...but now my GP wants me to go to see the Gynaecology team...I appreciate he wants to be cautious, but it has taken 5 weeks to get this far. I really don't want to go to yet anther hospital, particularly as I can't drive at the moment. Not convinced the gynaecology team will know enough about SAH to make an informed decision aaarrrrrrggghhhhh!!!!!

Thanks everyone, I managed to speak to the neurovascular nurse specialist today and she had asked one of the consultants for advice. They feel I should definitely go back on the HRT and are writing to advise my GP of this, so hopefully he will now prescribe for me. Interestingly she also felt I should be on more pain medication and sleeping medication, not sure what I think of that, but will take one step at a time. Thank you so much for responding to my question, don't know where I would be without BTG. Julie xx

Hi, Has anyone got any experience of taking HRT post SAH? I started taking it a couple of weeks before my SAH and now can't seem to get a straight answer as to whether I can restart it or not. I had quite severe menopausal symptoms and thought long and hard before taking medication, it did seem to help. Now I have a mixture of symptoms and don't know which are menopausal and which due to SAH I've had doctors who have said yes take HRT, others saying definitely no.......help! I know no one on BTG is allowed to give medical advice, but any experiences would be very helpful Thanks Julie

Thanks Lesley, hopefully its not just a blip! Julie x

Thank you so much everyone! Good news - I had a much better night last night, may be a one off or because I have relaxed a bit - but it was LOVELY!! Thanks for the reassurance and tips. I am sticking with a wind down routine before bed. Pretty much given up caffeine as well since SAH. Daffodil - I tried extra pillows last night and it helped a lot, I didn't get up for extra pain tablets in the night. I've tried music and 'sounds' type things at night, but they seem to wake me right up because I start concentrating on them! I put a fan on last night and think staying cool and the white noise might have helped me get back to sleep after waking. Thought I would try keeping a note of how my day has been, if I do anything different at bed time and how I've slept to see if theres anything that helps particularly Julie x

Thanks Karen, It helps just knowing its 'normal' for this stage and that it has improved for others. Thank you for replying, I'm finding BTG such a support at the moment. Would be thinking I was going bonkers without the kind words and shared experiences Julie x