Hoofbeat

Hi Like most of you, I am very keen to ensure my recovery goes as smoothly as possible; ideally I'd like to regain as much of my visual field I've lost as possible. I've read about how omega 3 and vitamin B can help repair nerves, so I've added these supplements to my diet. I was just wondering if any of you other members had come across useful information about how you can help your brain recovery more quickly or effectively, whether that be by considering what you eat, or through alternative medicines? I'm most interested in repairing nerve damage. Thanks

Hi Alicia So sorry to hear that you've joined our 'club', but thanks for sharing your story and I'm glad you've found this forum useful. Sorry they never found an explicit cause of your SAH - I had an intracerebral haemorrhage just over 2 months ago and they still haven't found a cause for mine, so I know that aspect is frustrating. I hope your headaches ease soon - thankfully since I've been given codeine I've managed to keep my head pain to less than 5.

Teechur, thank you so much for your update. As someone who is only 2.5months into their recovery from a haemorrhagic stroke it's lovely to hear of positive stories. Like you I never dreamed I was having a stroke (I was 27, fit and healthy with low blood pressure!) and right now I'm just hoping I can return to my pre-stroke physical fitness. Right now I'm still battling the fatigue, headaches and vision loss but stories like yours help inspire those of still in recovery, so thank you!

Jo I'm really hoping the blood had cleared for me at my 3months, but only because when I was taken ill in the US (I ended up there as had bleed on holiday in the Caribbean) they told me I would have a follow-up MRI after 6weeks when they hoped it had cleared! My neurologist in the UK then said that the 3month mark is normal as it usually takes at least that long for it to all clear. He did say in some cases it takes longer (even years!) but he was hopeful that most of the blood would have cleared at 3months. I thankfully didn't have hydrocephalus (at least I've never been told that I did!) and my bleed was about 3cm and in the left occipital lobe (so it's affected my vision). What tests did you have initially? In the US I had CTs, MRIs, angiogram, then they also checked my heart using a transoesophageal echo and had numerous blood tests as well as an oncologist checking my skin all over to rule out skin cancer as a possible cause! They found nothing - absolutely everything was normal and I didn't have any of the risk factors (e.g., no family history, no smoking/drugs/excessive drinking and I'm only 27yrs old). Back in the UK my neurologist agreeded the US doctors had tested everything thoroughly so he told me to go away and come back in 3-4months! Now just trying to rest lots (still have headache and fatigue, as well as vision loss).

Good luck - hope the appointment goes well. I always find it useful to write down all of my questions and take the list to the appointment, otherwise I forget what it was I wanted to ask!

Hi Jo That's great news! Like you I had an intracerebral bleed of no known cause (yet!). I'm only 2 months in, but the doctors suspect mine was also caused by a cavernoma (sometimes also caused a cavernous angioma). My understanding is that it's a deformed blood vessel, usually something you were born with that has just been a ticking time bomb. I did some research a while ago and read something that said they are actually more common than we realise, it's just in many people they go completely undetected as nothing ever happens with them, but that in some people they just spontaneously burst. Generally I think if your MRIs come back clear (once all the blood has cleared) then it probably means you've had a cavernoma and it's now completely disappeared. I think in some cases they do still persist and then they can make a decision to either leave it alone or do some surgery on it. I imagine your neurologist will explain it all if/when it comes to that, but I'd recommend having a quick look at the Cavernoma Alliance's website (I found lots of information on there): http://www.cavernoma.org.uk I hope the blood clears away for you soon - my neuro told me that all the blood irritating the nerve endings is what causes my headaches etc, so if you still have blood there I imagine that's why you're still a bit dizzy and tired? I'm due another MRI at my 3 month check-up when they're hoping all of my blood will have cleared, but they have warned me that in some cases the blood takes longer to dissipate. I'm anxiously awaiting the phone call to call me in for MRI as I've been told until they can see what was underneath all my blood they can't 100% rule out something more sinister like a tumour (I also absolutely hate having to have MRIs as I can't stand the noise or being inside the scanner!). If you don't mind me asking, where was your original bleed and how large was it?

Hi Paul I had an intracerebral haemorrhage (no cause yet found), but I had an angiogram and it was honestly fine! I was so drugged up when they did it I just lay there all sleepy and don't remember much at all. My leg was a little bit sore for a few days, but nothing major, so try not to worry. Like others on here, I still find myself tired (I've just got to the 2month mark), but it does get easier as time goes on. Just think, if you hurt your ankle, you'll rest it and avoid walking unnecessarily on it. Therefore really with a brain injury we should rest our brain, but it's impossible to ever rest it completely as your brain is also having to manage the rest of our body - your brain is trying to recover whilst it also controls your breathing, digestion, moving etc etc! Brain injuries are therefore going to take a while to recover from, as even when your sleeping your brain isn't resting!

I'm afraid I don't have much advice as I'm still in the early days of my own recovery, but do you have a branch of Headway near you? I met up with my local Headway branch this week and they were so helpful and told me that they can arrange free therapy to help with anxiety, so it might be worth seeing if you have a Headway branch near you (they can come and visit you in your home).

I'm following this thread with interest too. I had a bleed (cause currently unknown) on 14th Nov 2013 and have been left with visual field loss and headaches, although the latter should eventually go away. Alison I can completely agree with this statement! I'm 27years old and was about to start a new full time position at the beginning of 2014 (with same company I had been working PT for). I'm currently on sick leave but I'm not sure if I'll ever to be able to work in my current role again. Firstly my visual issues are going to mean I can't drive to work and I live in a village with poor public transport networks, so there is no way of me getting to work. Secondly the very nature of the job makes it difficult for me to work from home, and thirdly I need good observation skills to do the job well (not sure this is possible with vision loss!). I have no idea what I will do for employment in the future and it is the unknown that scares me! Being unable to drive also means that I'm unable to get to the stables to see and ride my horse (an unrelated wrist injury means I can't ride at the moment anyways) and after being used to seeing him for 6/7days a week and now only seeing him 3days a week when I can get someone to take me to him is hard. Oh Alison, I can completely sympathise with this. My Freelander is currently sitting unused on the driveway and it is likely I'm going to have to sell it as the cost of just keeping it not knowing if I'm going to drive again can't be justified (I spent over £1000 on it being serviced and repaired last week!). Tomorrow I'm meeting with a lady from Headway which I'm hoping will be a useful experience.

Hi everyone Just a little update from me: Firstly, I'm now unsure that my haemorrhage was an SAH as looking through all of the medical notes I was sent home with from the US everything refers to an intercerebral haemorrhage which I understand is different to an SAH (however, both my fiancé and I remember being told it was an SAH). Secondly, although my sleep has improved a little I still found I was waking regularly in the night and struggling to sleep all the way through the night. I was seeing my GP for a review on Xmas Eve morning and they put me on amitriptyline (which my neurologist had suggested if my sleep didn't improve) and that has been a revelation - finally I'm now getting a good night's sleep! The GP was happy with everything else (my BP was fine) and has signed me off work now until end of January as I'm still struggling with fatigue, concentration and headaches! So I seemed to be making good progress although I found Xmas utterly exhausted (not helped by two family bdays - one on Xmas Eve and one on Boxing day). However, I ended up with a horrendous headache on Thursday afternoon which kept getting worse and would just not go away and that night, I kept waking up in pain (although feeling drowsy from the amitriptyline). A 2am phone call to NHS direct on Friday am resulted in a trip to the GP on Friday morning. The GP then in turn sent me to my local A&E (they were concerned I might be having a rebleed) where I was quickly triaged and put in the majors ward in the emergency dept! They were fairly certain it was just a really bad headache as all the neuro signs were good, but decided to send me for a CT to be sure. Fortunately, they were right and the scans showed there was nothing to be concerned about. They sent me home with some codeine which definitely helped with the pain; I usually refuse to take codeine as I feel so drowsy and sick on it, but I was in such agony with my headache I was willing to put up with the side effects! Luckily one dose of codeine was enough to break the pain cycle and I haven't needed to take it yet again, but I've now got it incase I have another bad headache in the future. On a slightly more positive news, yesterday I received a letter in the post inviting me to an appointment with a neuro-opthalmologist who my own neurologist and opthalmolost told me was doing research into visual field recovery following a haemorrhage. Fingers crossed this initial appointment may enable me to get involved in his research project and it may give some insight into whether we can do anything to improve my quadrantanopia which I've currently been left with following my bleed. I hope everyone else is doing well after Xmas and isn't feeling quite as exhausted as I have been the last few days!

Hi Win I can't say I have, but then I'm still in the early stages of recovery. However, I have heard that after brain injuries peoples taste in food can change dramatically with them hating stuff they previously loved (and vice verse). Given a large part of taste is actually the smell of good, I presume this could mean in theory that your sense of smell could have been changed and what your smelling is something that previously would not have bothered you (or maybe even notice)?

Hi Gemma Thanks so much for your kind words - I am trying to set myself small tasks to achieve (the other day it was putting a few baubles on the Xmas tree!) which is giving me something to focus on, even if it means the next day I'm feeling more tired. I'm slightly dreading Xmas as it will be hard to keep up with the rest as we have family birthdays on Xmas Eve and Boxing Day and the Xmas Day celebrations! We have decided to still host Xmas Day with my fiancé doing the cooking as at least if we're in our own home I can disappear to my own bed and have a rest! My fiancé actually spoke to the Citizen's Advice Bureau and they advised that I couldn't get any government support for the 3 days a week I was working freelance as the 2 day a week sick pay I would be receiving from my employer would be larger than the maximum weekly amount from the government anyways.

Hi Gemma I just wanted to say welcome and thanks for sharing your story. I am still fairly new to all of this myself and it's great to hear other people's stories. So pleased to hear that everything is now looking positive for you - make sure you rest lots and drink lots of water. Chloé

Thanks Iola and Win for your words of encouragement. Am booked to go back to the GP on Xmas Eve as have only been signed off until 31st Dec, but can't imagine I'll be ready to go back to work in January as still so tired (am having good and bad days at the moment still!).

Hi Emma I don't have much information to add as there are far more knowledgeable people on here than me and I'm a relative newbie like you (I had an SAH on 14/11/13 whilst on holiday abroad). I felt a bit lost when I came home, particularly because I was hospitalised in the US and discharged by them before I flew home and then felt very lost when I arrived back in the UK. I would suggest you make an appointment with your GP and speak to them. Mine was very helpful and spent 40minutes talking with me and she also helped me arrange a referral to an opthalmologist who was able to investigate my vision problems (my SAH was in my occipital lobe and I've been left with right inferior quadrantanopia). Re: the DVLA, you definitely need to notify them (you can download a form off their website and post it to them and they'll liaise with your GP). Your GP/opthalmologist will be able to give you a better idea about when you may be able to drive again, but please don't try it until you've been given the go ahead. Make sure you rest lots, drink lots of water and don't try any heavy lifting

Hi Skippy Thanks for the reminder. I used to be such a big water drinker (I was well known for my constant water bottle I had with me!) but to be honest I don't think I'm drinking anywhere near enough as I was now. The effort of going to the kitchen to get myself a drink always feels too great! I might start buying some large bottles of water to keep next to me in the lounge/bedroom to force myself to drink them. I realise I'm still in the very early stages of recovery, but all the specialists seem to think I'm in a much better state than most people are usually in after an SAH, so I feel like I should be recovering quicker! Thanks Chloé

Thanks Allison, I thought that would be the case. I just used to be such an active person and am struggling with the adjustment! I'm making a conscious effort to do everything a bit slower today to see if it makes a difference to the frequency of my headaches.

So today is 4weeks since my SAH and I've been discharged from hospital nearly 3weeks and back in the UK about 12days. I've been trying to follow my neurologists advice about doing some very small tasks daily and he's right, my sleep has improved significantly which is great. However, the last few days I've been finding my headaches have been getting worse. Whereas before I was taking paracetamol less often than every day (I only take it when my headache reaches a 3/4 out of 10 on the pain scale), now I'm finding the frequency of my 3/4 headaches are increasing and I'm needing to take the paracetamol more regularly. Did others find that as they tried to do more, the frequency of their headaches increased? I'm finding at the moment even getting up and walking into the kitchen to get a drink is enough to give me a headache (I almost feel like I get a head rush when I stand up which manifests itself into a headache). Is it just because I'm trying to do too much to soon and need to take things still a bit slower (whereas before I walked slower, I'm now walking at my usual speed)?

Mary I did have the occasional headache before the SAH but I always felt they were explainable, e.g. after having driven 6 hours!). The 2 weeks or so before I did feel very tired - I kept falling asleep in front of the tv at around 8:30pm which my fiancé teased me for at the time!

Thanks everyone for the advice - its all been very useful. Unfortunately I didn't take out any separate insurance to cover loss of earnings for my freelance work as I naively thought I wouldn't need it. It was also only a temporary arrangement as I was due to go back full time to my current employer in January (I used to work FT for them but stepped down to PT when I went back to Uni to do an MSc, but we had just agreed my return to work, although I haven't signed any new contracts as we just agreed to keep my original existing contract but change the working hours as things changed).

Hi Alison Thanks so much for your reply - it's lovely to meet another horse lover on here. I'm so sorry to hear that you have been told not to ride - is that just in the short term or forever? If the latter do you think you would be allowed to take up carriage driving instead? Whilst I have sat on my gelding it's only because he's so calm and experienced; I wouldn't feel comfortable sitting on anything else any time soon. I'm hoping to sit on him once a week for the moment in walk and to gradually build up the length of time I can manage. I'm just sticking to our indoor school and to be honest I'm not sure it I'll ever feel confident to hack again due to my peripheral vision loss. I'm very fortunate that he was already on full livery due to my work commitments and was already being hacked a couple of times a week by the yard and they're now hacking him mon-fri for me which is a relief as I know he's fully cared for and I don't need to worry about him. I hope you can work out a way to get both of your horses looked after while you recover. I certainly agree with you that seeing my horse makes me feel so much better. I've had my gelding 14years so he is definitely a part of the family! He's also always been a bit of a grump on the ground (hates cuddles and is fiercely independent!) and he's just as grumpy with me now as ever which is so nice just because it's so normal (other people seem to pander around me and have that pity sound in their voice!). Currently I'm getting to see him about 3times/week which is better than nothing. On a more practical note does anyone have any advice on sick pay/benefits? Before my SAH I was working part time for an employer 2days/week who is now giving me sick pay equivalent to my full salary, but the other 3days/week I was working as a freelancer (I haven't paid NI on these earnings yet as only started this very recently so it will be in next tax return) and am now earning no sick pay for those three days. Is there any way I can claim any sick pay from the government for the three days a week?

Thank you everyone for the kind wishes and advice. I saw a neurologist (first one in the UK and one that my GP recommended) on Thursday and thankfully that was a little more positive than the opthalmologist appointment. We still don't know the cause of my SAH but he suspects it was a cavernous angioma (although they can't 100% rule out a brain tumour until the blood has all cleared). He seemed relatively unconcerned about my case and told me that I need to try and push myself through the tiredness - easier said than done. He cleared me to start riding whenever I felt strong enough, and so on Friday a friend took me to the stables and I sat on my 18year old horse for 5minutes - it was total overwhelming but also felt so natural (I've been riding for 20years!). Feeling inspired I also did some baking on Friday for an xmas gathering that I really wanted to attend yesterday (it was with old uni friends and is a yearly tradition). Well I just about survived the gathering but I realise now that whilst emotionally I needed it (so good to be surrounded by so many friends), physically it was a step far too far! I tried to rest throughout the day but come 9pm and I was so utterly shattered I couldn't move at all and I felt like my entire limbs were jelly and every muscle was trembling. I could hardly walk by myself and even today I feel so weak. I have now learnt the hard way that I can't push myself so hard when it's only been 3 weeks since my SAH and I must not try and do so much - I think I took the neurologists advice of trying to push myself to the extreme! Whilst I'm feeling it now (so exhausted and suffering headaches) I'm glad I've done it as I think it's shown me a) what I can still achieve (small task!) and that I'm going to have good and bad days and I need to realise that. Unfortunately one thing that the neurologist did say which I was disappointed with is that he wants to wait 3 months before we do a follow-up MRI to check that the blood has all cleared and to see what (if anything) is underneath the blood. When I was in the USA I was told the usual process is 6 weeks, but he said we get a better picture the longer we wait - has anyone else waited this long for their follow-up MRI? Given we don't have a definitive cause at the moment, I feel like I won't get any reassurance that it's nothing more sinister (i.e., a brain tumour) until after I've had that MRI. I also asked him about my insomnia and he suspects that it doesn't help I've only been back in the UK one week and some of it is still jet lag (I'm not sure). He suggested trying to get into a good routine where I wind down slowly as he doesn't want to put me on medication for the insomnia just yet. Whilst this has helped I've fallen asleep quicker, I've still found that I'm waking up much more than usual in the night. I'll keep persisting at developing a good routine (I'm trying hard to not actually sleep during the day but just to rest) and if I'm still struggling at the end of this week will see my GP.

Thanks Tina. Sadly my appointment yesterday with the ophthalmologist was rather disheartening. She confirmed what I already suspected about my vision loss - it isn't looking that hopeful that I will be able to drive again which I must admit I'm really struggling to come to terms with as without the prospect of driving I'm not entirely sure what employment prospects will be like long term. I was also a keen horse rider and own my own horse who is a 15minute drive away and living in the countryside without my car makes it incredibly difficult to get to him. My fiancé has been incredible throughout the whole situation and has driven me to see my horse a couple of times since we got home to the UK but long term it is going to be difficult to see him as often as I'd like (I usually visit him daily and ride several times a week) if I can't get myself to the stable. Thanks Iola. The thought of never finding a cause of the bleed unnerves me - I've always been a natural born worrier and the fact we don't yet know why it suddenly happened makes me worried it could spontaneously occur again and that I might not be so luck a 2nd time! Did any if you suffer with insomnia after your bleeds? Since getting back to the UK last sat I've only managed one good nights sleep (it usually takes me a day to get over jet lag), but right now I'm really struggling to fall asleep and also stay asleep. I'm so tired and desperate to sleep but I just can't. I think all the emotions are catching up with me now which isn't helping (not to mention someone hit my car last night and drove off whilst my fiancé took me to my medical appointment!). Am going to mention it to the neurologist when I see him this afternoon and see if it's worth me taking something to help me get some good nights sleep. Thanks again for all of you kind words

Thanks WinB143 - I've always loved singing and it has still been giving me pleasure now, so don't worry I plan to sing lots!

Hi everyone, I'm Chloé and I suffered an SAH almost 3weeks ago whilst on holiday in St Lucia. After a CT scan in St Lucia revealed an SAH in my left occipital lobe, I was flown by medical flight to the US after about 36hours where I underwent further tests (3more CT scans, MRI/MRA, angiogram and a trans-oesophageal ECG, blood tests). No aneurysm, stroke or AVMs were found and I saw multiple doctors including an oncologist and haematologist and they still have found no possible cause of the SAH. I never lost consciousness and my BP has been amazing throughout. I am only 27years old, have never smoked/taken drugs, am relatively active and drink very little alcohol; neither do I have any family health issues. The fact they've been unable to find a cause leaves me slightly worried as I know that having a spontaneous SAH in your 20s is unusual! I've been advised that I'll need a follow-up MRI/MRA after it's been 6weeks since the bleed to rule out anything like a tumour under the bleeding. I arrived back in the UK last weekend and have seen my GP who has referred me to a neurologist who I'm seeing tomorrow afternoon, along with an ophthalmologist and physiotherapist. My right peripheral vision has been impacted and I feel like I have blind sports on my right hand side and I find my eyes get very tired - I've been warned that they are unsure if my vision will return fully (I have informed the DVLA). I still feel very weak and tired all the time but was told by the neurologist in the US that I should be less tired very shortly as the bleed has only impacted my vision; he felt that once I was home in the UK I'd develop a routine and I should get stronger. My neck is still very sore which I've been told is expected and is why I'm seeing the physio. I still suffer the occasional bad headache for which I'm taking paracetamol (technically it's Tylenol as I was given it before I left the US); though if the bleed was a 10 these headaches are more likely a 4 on a 1-10 pain scale. I'm also taking keppra (anti-seizure med) as they prescribe it routinely to all SAH patients in the US; my GP has said it's not given in the UK if you've never had a seizure (I haven't) so has advised that the neurologist may stop it when I see him tomorrow. At the moment I'm just trying to focus on resting and getting better, but I'm finding it all quite overwhelming. One minute i feel fine and then I stand up and walk and realise how tired I feel and how my vision isn't right! It's so infuriating! Anyways I'm keen to hear any experiences from spontaneous SAH sufferers, particularly if you're younger than the usual sufferers.