Daffodil

Jenni, Macca has given great advice and I agree with every single thing he says. You must please keep in mind that just because you can’t see you have injured yourself you have and you are very early in your healing and so you need to allow the brain time to heal and adjust to what’s is different and find new pathways. I couldn’t watch a TV for ages and then nothing cognitively demanding ...took too much brain energy so used audible and tried drawing and other things. I painted furniture, took me ten times as long as it would have before but hey I still did it. I taught myself how to upholster which was hilarious...I genuinely couldn’t even thread a needle post bleed. That took a year before I could do it...but my solution...my daughters are very good at threading needles! Accept help, look for solutions and do differently...it’s ok. i am a big one for using an analogy . Say you were walking down the stairs, took a massive tumble and sustained a very nasty break, you would have no choice but to accept the limitsthat this would place and also the cast and crutches would all signalto all that you are still battered and bruised. Well that’s your brain right now honey. It’s on crutches , you can’t pick up where you were and as it’s in the driving seat of your body so it can enforce slow. Please listen to it. I was and am a mum to young girls too, I know that loss of identity and purpose but equally they just want YOU. Genuinely If you spoke to my daughters now 7 years down the line ( they are 14 and 16 now) I know they’d say I am actually a more enjoyable mum. We do things differently, slower, but they have my attention, my listening and most of all they still have me. They have friends without parents and get loss can happen. Let yourself off the hook. You cannot change or reverse this event, you have to go on and rebuild and regain. And you will honey.

Jenni, The fact you’re were walking and talking when you went into hospital meant they didn’t recognise the symptoms ,not great I know and others have experienced similar and then sadly they couldn’t get the positive confirmation of a bleed with a LP . As I understand it a CT scan isn’t as clear as a MRI to confirm blood in ventricles and arachnoid space and whilst all bleeds are incredibly serious , depending on the grade of the bleed it may mean less blood is present , as does where the bleed is located, there are so many variables so often the LP becomes the check point if unsure. My daughters were 6 and 9 when I had my SAH and they had to adapt to mummy being very poorly for a long time An day unable to care for them and then not driving for well over a year and generally not able to do everything as I did and everyone here told me not to worry, that they would weather it, just to Be honest with them and kind to myself as I healed . They were right. My girls are 16 and 14 now and they have grown into compassionate and independent young women, and a deal of that is down to their experience of supporting their mum, and that’s ok, and you know what ? They wish it hadn’t happened but they also see the value of having lived through it. Life goes on. We learn, love and go on. You will too. The BTG gang knew when they gave me that advice over 7 yrs ago that the best way to recover and adapt to change is to look after yourself and don’t beat yourself up and about the whys and regret. Your little girl has her mummy, that’s the key thing to celebrate , nothing is going to change the fact that our bleed happened, so slow it all down, don’t worry about what you could have done differently.

Thanks for sharing this Cel, good to see that DVLA have actually made it a little clearer which circumstances mean what Impact than it was previously and used to be hidden in lots of doctors guidance notes. I wonder if has come after Headway petitioned them on this.... as far as I read it the main point remains which that Most SAH survivors can expect to be able to return to driving once their doctor deems it safe to do so. This summary I wrote I think still applies: So I think you need to see your doctor first and confirm ‘clinically you are cleared to drive’ but no longer it seems do you have to notify DVLA unless you have a Shunt, surgery or interestingly a Non aneurysmal SAH which you ‘Will need clinical confirmation of recovery and, if no other cause has been identified, a documented normal cerebral angiogram.’ Be good if you can share any advice here if you do decide speak to DVLA anyway. thanks

Hey Julian, I agree on the water front but also find my headaches can push up in winter with less daylight and I now take a low vitamin d supplement even though I spend quite a bit time outside each day , anyway I think it helps me keep balance and I also change my food in winter to eat more fish etc. Now do check with doctor before taking any supplements and maybe ask for a blood test to check your mineral and vitamins but do think that we absorb some less well post SAH, that’s just me speculating, but I always like to try and find a logical explanation. Water is probably the safest bet. 😄

A lovely post and very honest. I winced as I recalled that constipation from all the meds...good to hear the site is helping you , it certainly has helped me. The water and pacing and meditation will all be useful that’s for sure. you asked about nausea, mine continued for a good whilst after my bleed but I had some other complications that could have been the cause of that. Main thing if it’s increasing , or getting worse then speak to docs, don’t suffer in silence or ignore things. Look forward to hearing from you on the site.

Finollie, welcome and really glad the shared experience on driving is useful and is giving you hope. I personally would go back and see a neurologist and seek their opinion on this as think their view will be crucial in getting DVLA to consider any exceptional circumstances as they will seek advice of the neurological specialist. I am hoping Johnnie M or Hoofbeat read this question as they have been through the process and may offer some valuable suggestions. But keep the faith!

Sophie, beautiful words to share and they moved me too. Our frame of reference for our own reactions and capability gets shifted entirely by the SAH but for us, the lucky one who lived to tell that tell we start building that new framework, testing new limits, finding changed tolerances. Fly high Sophie. I wish you all the luck in the world and keep us posted. X

This quote is from MaryB member in the US sharing the advice given by her surgeon not to drive for 3 months post SAH. Members report different advice but unlike the UK there seems no US wide requirement to refrain from driving. This attitude seems to be the same for Australia as well. If you live in a country other than UK it would be helpful if you can share here if you come across advice, restrictions or received help getting back to Driving that might help someone else in a similar position.

This quote is from fellow SAHer Annec who gives some advice for anyone who needs to have an eye test at request of DVLA

Cleared to drive Once you have been cleared to drive by doctors or DVLA depending on circumstances then you may be itching to get back out there but the best advice is to take things very slow indeed. Members who who have been through this report that the cognitive effort of driving exhausts them fast in the early days so build it up slowly and don’t rush into long journeys too fast some tips that may help taken from other historic threads: Take a passenger on your first trip out for some moral support and also in case you need to switch places. on first few trips in the car driving allow time to rest on arrival at destination even if it’s just sitting in the car avoid other distractions whilst you drive, no music , no chatter, it will take a huge effort for your brain so ease it in gently practice night Driving build your stamina up Driving some members have attended refresher lessons and courses . I personally prevailed on my husband to come out with me at first before I would take the kids in the car. I wanted a second opinion, ( third if you count consultant and DVLA) that I was able to drive safely. My confidence was lowered and I needed time to build it back up. Be sure to share what helped you when you got back behind the wheel. Or what not to do!

This advice is taken from the Quadtrantanopia thread and the quote is from BTG member Hoofbeat sharing advice on reapplying with a visual condition , more can be found on that thread and it is recommended you read the entire thread.

You must tell DVLA if you have a driving licence and: you develop a ‘notifiable’ medical condition or disability a condition or disability has got worse since you got your licence Notifiable conditions are anything that could affect your ability to drive safely. They can include: epilepsy strokes other neurological and mental health conditions physical disabilities visual impairments SAH is listed by DVLA as a notifiable condition but it does not automatically mean a revoke of license. You should also tell your insurance company about your condition or future claims may be invalid. Driving against medical advice may also invalidate your insurance. If you are in any doubt as to whether you should drive or not, you should contact the DVLA (see the links below) or ask your doctor. NASAH is not listed as a notifiable condition but some doctors will insist on a report to DVLA. Most SAH survivors are advised they can get back to Driving once they are well enough to do so and they are considered to have clinically recovered. A license is typically only revoked post SAH if there has been invasive brain surgery e.g for an extraventricular drain (EVD) , Shunt, or a epilepsy developed since the event or if there are visual of physical defecits which means you are not safe to drive. Typically for lasting physical and visual defecits you will be asked to attend an assessment or have a doctor/ consultant provide proof of fitness to drive. In most cases in the U.K. people can return to Driving once their treating doctor deems they are fit to do so. The exception is for those who hold a license for driving HGV and buses . They must notify DVLA immediately and are likely to see a revoke of that part of their license. Link to current DVLA position https://www.gov.uk/driving-medical-conditions Guidance to medical professionals https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/670819/assessing-fitness-to-drive-a-guide-for-medical-professionals.pdf ( note, this lists the current guidance for SAH and NASAH but if you have a VP shunt or an EVD placed or developed epilepsy then you need to read those sections too and often this means 6 months minimum revoke of license. ) This information applies to the UK only. The procedure in countries other than the UK may be different.

Our decision to add a separate section to the forum about Driving after SAH is in response to the common questions asked about Driving after the event , regaining a licence if it has been revoked, and to share experiences of driving whilst living with common defecits post bleed. The threads that follow should not be taken as absolute fact, or provide any definitive answers, as to whether someone could or should drive. This site takes no responsibility for your actions, because you must check your own rules and regulations (both driving and medical), whichever state or country you are in. This is common sense, really. It merely seeks to advise you of other peoples' experiences. We do our best to moderate any postings we find that we feel are not appropriate, or need toning down, but you are responsible for anything you do once you get behind the wheel of a motor vehicle of whatever type. Everyone is urged to apply common sense, good judgement and complete their own due diligence, or what is appropriate to their own situation, and of course, to follow the laws in their country. Please seek and follow all appropriate professional medical advice with regards to Driving post a SAH. If there is a reason why you are not driving now, ie vision problems, dizziness, loss of movement, surgery , lasting disability, medication, insurance, then whilst these threads may share some experiences that may help you, it is important you defer to your treating Medical Team, and then your Driving Authority, for their assessment of your driving capability. No one has all the answers on getting back to Driving after SAH. Each person's situation is unique to the individual and their bleed. Sadly, for some it may never be a possibility, but many members have shared experiences of how they have found getting back behind the wheel, from how long it took them, to the obstacles they overcame on the way. Remember that you have a responsibility to other road users, drivers and pedestrians alike, to ensure you are fit to drive, before you get back behind the wheel. Safety is paramount, for all our sakes. In many cases, the biggest hurdle to getting a license back is time. We hope these threads and discussion can shed some light and bring hope. Good luck to you all.

When I first came to the site in my early days, searching for answers , permanently fatigued and rather hopeless I was confused by Keith and others in the green room offering up a spoon or two, what were they on about. Anyway I soon was enlightened to this great analogy which helped me and others understand my daily choices so think it worth pinning here The link to her site and this story. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Tori, it's wonderful that the rehab is having such an impact. Please tell mum that she is not stupid from all of us here. There have been times I expect most of us have uttered that phrase when something we could do so easily before takes so much effort now or it's hard to figure out why we just can't do it. Frustration is a constant companion at first once pain moves over but it continues to improve especially if you always keep it xploring the possibility of a situation and are prepared to adapt and accept all offers and suggestions of help. I can look back and see so many 'regains' since my SAH and am fortunate that most of my physical ability is similar to before. It's not the same, there is plenty still I can't do that I did before and also that I just don't have the cognitive stamina to attempt but every , day, month year since has shown improvement. Keep looking forward. Take care and thanks for the updates. People will read and take comfort from your sharing ..

Let the tears flow Shobs! Well done you, well done Sandeep, tell him to keep up the good work and a blessing on the steady hands of the crew that operated on him today and who will no doubt be helping another deserving person to'orrow. thats another thing in the rear view mirror for you now but go steady both of you. There's no rush. so pleased for you both.

Hi Dotty, hope Dad is keeping stable and the hospital team are looking after him. Hope you and family are looking after yourselves too as its a real shock for everyone involved. We can't give you medical advice but when you say they haven't operated, not every SAH is operated on. It maybe be worth asking whether he had a visible aneurysm burst that they can see on the scans or if the source of the bleed Is not known. That way you know the facts. To explain that, we have lots of members here who have had non-aneurysmal bleeds , NaSAH, which basically means no cause was found for their bleed but it can still be a severe grade bleed across the surface of the brain. People who have NaSAH don't usually have any interventions to 'fix' the bleed orgin. . Those that have SAH , also a bleed across the dura of the brain , usually have an aneurysm visble on scans which is presumed to be the origin and then we go on to have clipping or coiling or stenting. Some of us also developed complications from our bleed, (these can more often be associated with higher grade bleeds but anyone can experience them, ) including hydrocephalus, ventriculitus, and these may require other short term interventions or surgery to place drains or sometimes long term solutions like VP shunts. There's some better explanation of medical terms related to SAH in the glossary posts on the forum pages. http://web.behindthegray.net/index.php?/articles.html/sah-info/ The main thing I suggest is to talk to your hospital about Dad, what is the plan, what can you do. how long will he stay? Get a good relationship with his team. he is needing you to be his advocate right now so try to find out as much as you can and then also give him time to begin his recovery as well. He will struggle to concentrate and take in any new facts, he will get confused in his surroundings and with events and this will change each day. My family were were told to expect the worst too and it was touch and go but the reality for me is I don't recall any memories from my first week and for a long time after that it was like Groundhog Day for me and then I could do a fraction of what I could do previously for a long time afterwards. . Reassure him, be gentle with him and each other and offer plenty of encouragement. This is very early days for Dad but the fact he has a good swallow, has recollection of you all is reason to hope his recovery will continue to show a good rate of progress. Confusion is not unusual but if you think he is getting worse or the confusion is increasing then that is worth highlighting. take care Dotty and Dad. Good luck

Chris, we are fortunate to have you amongst us as your words are always kind reassuring and helpful to others and it's great you took the time in your own recovery to also try to help others not feel so alone which be fair we all feel after our respective bleeds. i love the fact you are back to running and you get to 'nod' near the tree when you feel to your knees. But you got back up since then and recrafted yourself and adapted to changes. Well done ! Hope its its a good fall full of beautiful colours for running and that you keep improving.

Hi Clara, some great advice and hopefully masses of reassurance to be gained in the responses above. when we have our SAH it can mean a lot of disruption to a whole lot of the brains normal processing ability.i attended a neuropsychologist led group a year after my event where they explained the effects of a bleed can really mean you struggle to process the immediate surrounding which of course is where we live most of the time. All of us are unique in the effects we realise as we each have unique brains and personality but common to us all is that our ability to cognitively process new events, memories, conversations, sounds, sights which prior to SAh we take for granted takes huge energy for the brain to do . However our brains processing channels get damaged and disrupted by the soaking in blood and it just can't seem to do it as well after this disruption. This damage may be temporary or some may be more permanent and you need to learn new coping techniques. My personal theory on it is that the more 'cognitive' things we try to do whilst the brain is trying to heal from the blood spill and any subsequent surgery then all the more we will get signals that we just can't cope with the 'noise' 'conversations' 'lights'....the list goes on. So it's about pacing yourself and building the stamina up slowly and testing your ground. Can you do this yet, how long for, and go slowly. Skippy is right , if you broke your leg you wouldn't be back out on it expecting the same performance, your brain got hurt, it needs time And investment to heal and remember it's still trying to run the rest of the show so even more care needed. i also had PTSD which made me very unpredictable but counselling helped me also. when I came out of hospital I couldn't look at a screen , couldn't watch tv, couldn't follow more than one train of conversation at a time and if two people talked at once I was lost. I built up gradually, had gentle exposure to tv, I kept the radio playing low most days and kept trying to be in with people but I let them know why I was struggling and why I might be a bit 'tricky' to deal with. Some get to pick up where they left off but many do not and so we have to go slow and observe and realise what is possible today. Be kind to ourselves first and don't beat yourself up. Tomorrow it may be difficult or easier but the main thing is to keep having hope and don't push too hard. Take care.

No Crease here and had sah and have high blood pressure

Hi Taka, my girls are older now but I still recall the beauty and joy of those late night feeds and I am sorry that your bleed has disrupted that special time for you. If you are worried when you are feeding her maybe play some music which allows your mind to wonder with the music or ask someone to sit with you if that is possible. main thing is to try to relax into the moment of what you are doing and try to recycle those worries, send them off up to the clouds and just notice what's in front of you, the sounds and sights. The docs have checked you out, you will be dealing with the effects of blood being somewhere it ought not to be be so plenty of water and as much rest as your two lovely dots will allow you. Don't overcheck your BP! Maybe do it twice a day at regular times and then leave it out of sight. i wish you all the best.

The organisers have shared the slides from this event, the slides on fatigue management and exercise are really useful https://www.brainandspine.org.uk/news/201709/presentation-slides-sah-workshop

I posted about a seminar that the Brain and spine foundation ran earlier this year, one of the sessions it seems is about exercise post SAH and they have made the slides available which may help some of our members. https://www.brainandspine.org.uk/sites/default/files/documents/Fatigue and exercise presentation_Laura and Matt.pdf

Shobs, hope all goes well with the pre assessment and the operation. So it sounds like he is going to have a stent fitted? I think there are a few members on her who have had that procedure done so hopefully they will chip in with their views. Its always hard to face more surgery, that I can empathise with, but both of you keeping a positive attitude that has carried you this far and you will find the days will get better again also after this next episode has passed. I can relate about the kids and holidays too, I always go quieter during the kids hols as the extra toll makes me have to reprioritise things. Take care

Hi Maeve, i am very sorry to hear that your mum mum passed away and I am sorry for you and your sisters loss. The effect of an SAH are different for everyone but it is a very sudden event and in that it has the effect of any sudden life threatening trauma . I read a surgical view early after my discharge that a SAH is a "catastrophe" which in some ways I think is a good description. The larger the bleed the more the senses and functions are knocked out A SAH is still relatively rare but it is a very disabling and dangerous type of stroke and we who are here to post are the 50% who survived but we always keep in our thoughts those like your mum who weren't as lucky. i have no recollection of my sah event when it happened to be honest and it was a while before I knew I was in hospital. I suspect your mum had a very big bleed whilst sleeping and just never woke up. and knew no pain. I hope that helps.