Susan

Hi Karin for a lot of people after a bleed it is the distractions of background noise and bright lights, whilst trying to concentrate on a screen, that can lead to headaches and fatigue. I had to use noise cancelling headphones and move my desk to a cubby hole off the main office, with no overhead lights in my line of vision, in order to feel comfortable at work. Since the pandemic I have worked from home which has been a further improvement. I'm a data analyst and ultimately the only solution for me was reducing my hours. You are entitled to ask for reasonable adjustments such as regular breaks, time away from the screen doing other tasks, devices and adjustments to help with noise and light, working from home and reduced hours, but it is up to the employer as to what they can accommodate. It is still quite early days for you so I am sure you will see improvements. Best wishes. X

I can manage yoga and pilates ok although I tend to avoid some of the inverted positions. I have never been able to jog or do any aerobic activity that involves jumping about - it always gives me a sore fuzzy head. Every year though, I go ice skating on the Christmas ice rink and find I can skate for a good hour without any problems.

Hi Denise Don't doubt yourself. Go easy on yourself. No-one else can fully understand unless they have been through it, or are very close to someone who has been through it. It is very common to have a setback when returning to work - all that extra stimulation has an impact on your brain and you will feel symptoms resurface. Talk to your HR and see if you can reduce or reorganize your hours. Don't add on any more hours until you feel comfortable with what you are doing. My bleed was 7 years ago now but I still remember how hard it was returning to work - the noise and bright lights in an open plan office left me exhausted and fuzzy headed. I had originally been given a phased return plan to be back to full time hours by the end of 4 weeks. I knew this was not achievable and asked to see occupational health who advised I go back with an open ended plan to increase hours as I felt able. My HR person was not happy with this - they said they would go along with it but it was important that I make progress every week. The first week I did 4 hours each on a Monday, Wednesday and Friday. The second week I upped it to 5 hours a day for the 3 days and the third week upped it to 6 hours a day for the 3 days. I felt absolutely dreadful after 3 weeks of working. I had a meeting with HR every Monday to review how things were going and on that fourth week told them I thought I had gone too quickly and needed to reduce back down to 5 hours a day for a while. I had also been asking from the beginning to move my desk to a quieter darker space but nothing had been done about it. HR seemed exasperated with me and even commented that maybe I'd never be able to do my job. It was ridiculous and all so stressful - I just ended up taking sick leave for another 6 weeks. When I returned I made sure that I stuck to what was comfortable for me. Luckily they backed off and just let me get on with it. I still work successfully for the same company but I never got back to full time hours. I hope your workplace do support you. Make sure you talk to them if you are struggling. Don't just try to soldier on. Take care. X

Hi AS I think it is understandable you are a bit scared of bending over. Mine happened when I was standing upright but I still did not like bending over for months - just did not like the idea, or the feeling, of a rush of blood to the head. You will slowly get more used to it with time and eventually won't even think about it. Mine happened at 1am, stood in front of my bathroom mirror, just as I was about to clean my teeth before bed. I had been given a brown steroid inhaler by my GP a few days earlier for worsening asthma, and had just taken my second puff and put the inhaler down when my head exploded. I never used the inhaler again. Luckily I did not need it as my wheeze had cleared up while I was recovering in hospital. My asthma got worse again when I first got into my car 5 weeks later and I then realised an air freshener in my car was the cause. I found it scary when I had to use my blue reliever inhaler for the first time after my bleed. Also for a few months I used to feel a general sense of unease when I was stood in the bathroom looking at myself in the mirror late at night before bed. Take things easy. I wish you well in your recovery. x

Perhaps the easiest and most descriptive way to refer to it is simply "a bleed on the brain". This is how it was described to me when I was first admitted to hospital, and I did not know the term "subarachnoid haemorrhage " until I read it in my discharge letter.

Hi CHall, I hope you are recovering well from your NASAH. It can be confusing what terminology to use. I remember my occupational health doctor sometimes referred to my PM-NASAH as a stroke when he was talking to me but referred to it as a brain haemorrhage in his occupational health reports. To me a stroke is when part of your brain loses blood supply, whether that is due to a blockage (ischaemic stroke) or a rupture (haemorrhagic stroke). I have never thought of my PM-NASAH as a stroke as I do not believe that I had an interruption of the blood supply to my brain, just that the surface of my brain was irritated by the blood. When I talk to medical people I say I have had a subarachnoid haemorrhage, but when I talk to non-medical people I say I have had a brain haemorrhage as I think they would understand that better.

Hi Esedlock Guidance on the gov.uk site with regard to non-aneurysmal SAH and driving is: ✘- Must not drive and must notify DVLA. Driving may resume on clinical confirmation of recovery and, if no other cause has been identified, documented normal cerebrovascular imaging. As you say you are due a follow up very soon, your consultant should tell you then if you can drive. Once you have clinical confirmation the DVLA should allow you to drive whilst they complete their own formal investigations. Yes it is very common to have a great day and then sleep almost all the next day, especially so early on in recovery. Take care Susie Xx

It would also be worth having a review of her medications - has she started something new recently? My dear old mam was hypersensitive to lots of drugs and antidepressants in particular would cause confusion/delusions.

I would contact your GP first and get her checked out for a urinary tract infection. UTIs can cause confusion in older people and do not always present with the same symptoms as younger people.

Hi Rachel Sorry to hear what has happened to you and all the worry it has caused. I would not worry too much about the journal article you linked to - it is specifically is talking about early warning bleeds in the context of aneurysmal rupture - once an aneurysm has bled it is likely to rebleed in the next month if not dealt with. Your MRA should have indicated whether you had an aneurysm (ruptured or unruptured) and you said it came back with no abnormalities. Although the diagnosis of a bleed by CT scan or MRI/MRA would become less reliable over time, I think an MRA should be able to identify an aneurysm at any time. It may not identify all very small aneurysms but I think the resolution is usually pretty good - my 2mm unruptured aneurysm can be seen by MRA. I would feel reassured that you are going to see a neurosurgeon who specialises in SAH. They will be able to advise you if any further investigation is needed. Unfortunately as your lumbar puncture was not conclusive I am guessing that you may never find out for definite whether you had a bleed or not, but they should at least be able to confirm that you have no aneurysms. I hope you get to see the neurosurgeon soon. As Michelle said, please seek medical advice if you have any new or worsening symptoms. Best wishes Susie x

Hi Graham I would be interested to know if the doctors' statement of "overwhelming medical evidence" was based on a large scale research sample or just an individual opinion based on their own experience. More to the point though, even if the majority of NASAH patients do make a full recovery, which may or may not be true, I do not see why that should automatically negate the claims of those that don't. It also depends on the nature of your job - some jobs may be easier to return to than others after a haemorrhage. Good luck. Susie

Hi Heather I've met you and Rebecca at the support group too back in January, and Rebecca and her dad last November. It's great that Rebecca still attends the group to give advice and support to others. I had my non-aneurysmal SAH back in January 2016 but unfortunately no-one informed me of the support group when I was discharged. I only found out it existed by chance (through an old BTG post!) so did not get to my first meeting until 10 months on from the haemorrhage. It was helpful though as I was really struggling with work at the time and needed to talk to people who understood. I work Tuesdays now so don't get much chance to attend but hope to make it back to a meeting sometime when I have some time off. Missy67 maybe I've met you too? Love Susie xx

Hi Graham Sorry to hear that your claim was rejected. I do agree with the first doctor's statement that support sites are not representative samples as patients who make a complete recovery are less likely to contribute, however I don't agree with the other doctors' statement that there is "overwhelming medical evidence" that people who have suffered a NASAH make a full recovery and go back to the same jobs working the same hours. I don't think that there is enough research information to support this statement. I'm not sure medical professionals know the true long term effects of an NASAH - they rarely do any follow up on us! I can imagine that there are lots of NASAH patients who get discharged and make a good enough recovery that they never have to be referred back to a neurologist but that does not necessarily equate to making a full recovery. I know my own neurosurgeon, lovely though he is, seemed very surprised that I was not feeling better than I was at my 2 month NASAH follow up. That was why it was so good to find BTG, just to realise that I wasn't that unusual, otherwise I think I would have been constantly plagued with worries that there was still something medically wrong with me that needed investigating. It was nice to be reassured that actually I was just making a fairly normal recovery. I get regular follow ups because I have an unruptured aneurysm so I think I'll make a point at my next appointment (September) to inform them if symptoms are ongoing - not because I'm worried about them but just so they know!!!!!! At my last appointment in September (8 months post NASAH) I saw my neurosurgeon's junior. When I mentioned that I still suffered headaches and fatigue he did at least acknowledge that "these things take time". When I said that I was still sensitive to noise and light and asked if this was likely to improve he just said "probably". To be honest I wasn't really expecting much else as I know that it is difficult for doctors to give definite answers on these issues but I suppose I was just hoping for a little more interest. I don't know if you have seen this research - it has some studies on PM- NASAH. It is a very limited sample but acknowledges that there is a need for further reasearch in this area. https://www.researchgate.net/publication/303848012_Long-term_fatigue_after_perimesencephalic_subarachnoid_haemorrhage_in_relation_to_cognitive_functioning_mood_and_comorbidity Regards Susie

Hi Macca There is some evidence for a hereditary link for brain aneurysms. Colleen posted something about it last month. I'm not sure how you post a link but if you search on Google with the words "Mischer Institute gene mutation brain aneurysm" articles should come up. Regards Susie

Hi Phil Welcome to BTG. Sounds like you had a pretty traumatic holiday! I wanted to reply with particular reference to your questions on stress. I am 51 and had a non-aneurysmal SAH 14 months ago. I also have a very small untreated unruptured aneurysm. Pre haemorrhage I would have described myself as a very stressy person, but I always managed to handle the stress. Post haemorrhage I rarely get stressed out but I do not have the same resilience to handle stress anymore. 6 weeks after my haemorrhage I remember watching the film Castaway. It has a very traumatic plane crash scene at the beginning and I couldn't believe the reaction I had to it - my head started to pound so much I had to stop watching and lie down for an hour. This really worried me and I wondered if this would be my stress reaction from now on - I had visions of myself sat at my desk at work, being given a tight deadline and suddenly having this pounding in my head. I mentioned the experience to my consultant at my 2 month follow up and he said my symptoms sounded similar to that of someone with PTSD. I think he was right - it was a very specific reaction to a simulation of a life/death situation and I've never experienced it again to that extent. I do however have a very definite reaction to stress. Sadly not all life's stresses are avoidable and I recently had some family related stress that completely wiped me out for a couple of weeks - I had headaches, fatigue, nausea and insomnia reminiscent of my early days of recovery. My consultant told me that the two most important factors for me post haemorrhage were to continue to control my blood pressure (I take medication for borderline hypertension and nocturnal hypertension, and did so before the haemorrhage) and not to smoke (I gave up being a regular smoker a long time before the haemorrhage). He did not specifically mention stress and I have read that stress is not a contributing factor, but I can't help but think that regular exposure to stressful situations over long periods of time can't be good for anyone as it can contribute to high blood pressure. I am still phasing back into work - I only work 17 hours over 4 days (Wednesday off). I do expect to add on more hours, but really have no idea if I will ever get back to full time hours - I haven't ruled it out yet. At the moment I have decided to start trying to add more social activities into my life, to see how I manage that, before adding on more work hours. I am unsure what will happen in the long run if I am unable to add on more hours but I don't see the point in worrying about it - I can only do what feels manageable. My own experience has been that after suffering the initial trauma of the haemorrhage I have mostly found that it has benefited my emotional well being. I really don't want to throw all these positives away by putting myself into a position where life just becomes work and sleep. I hope you continue to make a good recovery. Best wishes Susie