DawnS

Ah now see, you are all reminding me of subtle changes that I've forgotten about! I have the exact opposite of this Michelle, I have never been able to extend beyond a Korma, but now I can eat spicy food that would previously have blown my socks off! Makes no obvious sense does it?

Ah, yes, I have a dent in the front of my head where the pressure valve was. It changes in size depending on how much I have done in a day. I don't see how bone can change shape, but mine does! I've just remembered another change, I seem to have a really high pain threshold now. Perhaps that's because there's not much day to day stuff that can hurt as much as a bleeding brain perhaps?

Morning (just), It seems that many of us experience very similar changes after sah. There's the ones we know about while we are still in hospital, memory loss, balance and problems with walking unaided, co-ordination etc. Then there are the changes that hit you when you get home - can't read, can't cook, can't handle noise and back-lit items such as TV and computers. I was wondering what more subtle changes people have noticed later in their recovery that might have gone unnoticed because they are so slight? As an example; all my life I have hated ready salted crisps, now they are the only flavour that tastes ok. I have always been terrified of spiders for as long as I can remember, but now they don't bother me. I've always been somewhat lacking in the humour department, but now if something strikes me as funny, I will laugh until I cry. I'd love to hear if any of you have noticed something similar? Dawn x

Hi David, I have suffered with headaches for years. I used to take comfort from the fact that I seemed to be the same as my mum, she always had a headache. Well, that is I took comfort until the day she died from sah! Suddenly being just like mum wasn't so reassuring The headaches I used to get pre-sah were often what I'd call bangers. My head would literally thump and would feel like someone was inflating a balloon inside my head (how apt a description with hindsight!) I'd be intollerant to noise and light. What I get now is like a tightening sensation in my whole head. If I ignore it, I get a ringing sensation and if it gets that far then it's bed for me. Twice now I've had a migraine since the sah. These have been exactly the same as they were before - a visual disturbance lasting about 30 minutes followed by a thumper of a headache. Since I started drinking 2 litres of water each day, it's rare for me to get a headache and is now a sign that I've over done things. Usually a lie down and a couple of paracetamol will fix it. I have to look at my week as a complete single unit now rather than as simply individual days. If i get more than 2 headaches in a week, I clear my diary and have days where I try to be very lazy. Which turns out to be a big fat lie as in a bid to pass the day I'll 'just' clean the windows and 'just' do some ironing Dawn x

Hi Penny, Yes I have notified everyone that my GP told me to.

Michelle, I don't take any medication apart from antihistamines. But i see, yes they could be checking couldn't they? That would make sense. I will be calling them yes, because they've sent me a letter stating that I've to pay £96 on the day! The DVLA assure me that the bill is theirs but the surgery was closed when I tried to call at 14:30. Another job for tomorrow then. Nic, I told the DVLA within a month of getting home (I think, poor memory). They wrote to me 3 months later to tell me they would write to me and not to phone them, honestly that's what the letter said! Then again a month later to say that they had written to my consultant and received no reply, but again please don't phone. The letter asking me to go to the doctor came last week. They are painfully slow, so don't hold your breath! To begin with, I didn't mind the lack of response because I didn't feel like i should be driving anyway, but now...well now I think I could!

Afternoon I've had a letter from the DVLA this week, yay! They want me to attend a docotor's assessment to see if I'm ok to drive again. The first appointment I can get is the 29th of March. I asked the receptionist how long it might take as I need to book it around my partner's shifts - she said oh, only about half an hour, we mainly need to take blood. Blood?? To assess whether or not I can drive? Has anyone else had this assessment? What should I expect? I had a letter from the surgery this morning telling me I will have to pay £96 for the privilege The DVLA assure me that the bill is theirs to pay, phew! Dawn x

Morning Mine was in August, but Mum's was October. I survived, she didn't so I'm just wondering on the flip side, are there months when you are more likely to survive? Dawn x

Hiya, to be honest I can hardly remember a thing about my 3 weeks in hospital, my short term memory didn't begin to return until I'd been home for a couple of months! Sorry not to be of more help, Dawn x

What a brilliant load of responses! Thanks everyone! Oh, I'd forgotten to mention timers, I'd be lost without my oven timer. I rarely cook as I find it so confusing...different things taking different lengths of time to cook?? Nah, I'll stick to a microwave ready meal thanks. I'm going to be sooooo healthy by the time my real brain comes back from it's jollies (I get the impression that by now, I should be nearer to accepting this new brain that someone left behind when they hijacked my old one...) Sometimes I'll get adventurous and make myself a flavoured rice. But I'm dreadful for sticking it on the hob and wandering off until later I think to myself..'what's that smell?' I now use the timer for everything. It's so loud it cannot be ignored. Even if I'm doing a task like cleaning the windows, I'll set the timer for 15 minutes so that I don't get carried away and start cleaning every window in the flat. Dawn x

Afternoon! I was wondering, would anyone mind sharing the coping mechanisms they have in place for some of the weirder side effects caused by sah? I get 'stuck' from time to time. Now this is nothing like it was when I left the hospital, back then I'd get stuck physically not just mentally. My hands would literally fight with each other. As an example, to explain what I'm blathering on about - the day before discharge, the OTs took me to a small kitchen and asked me to demonstrate making a cup of tea. Now I don't drink tea or coffe and never have. So, my right hand went to the tea caddy and pulled out a teabag, popping it in the mug. Then my left hand took it out the cup and put it back in the caddy. This went on for a couple of goes until I explained to the OT that I don't drink tea. Thankfully, they both found it amusing! These days this no longer happens, but when faced with a decision when I'm alone, sometimes I simply grind to a halt. I have learned that leaving the room can help. When I come back, I'll be unstuck and can continue whatever I was doing. If that doesn't work, I go for a shower. This complete change of tack is almost sure to work. If that fails, I phone my poor other half at work and he will talk me through it. This AWAYS works! Although I have never had one in all my life, I have learned that a diary is completely essential! I have to write down if I have taken paracetamol, because when I get a headache, I have no idea if I've already taken some or not. I write down the time I've taken them. My liver will thank me later! I also have to write down my contraceptive pill. When I first got home, my partner says I would get up 3 or 4 times per night with my pill packet in my hand absolutely convinced I hadn't taken it. Not only did we start to write it down, but we made sure it was me who wrote it so that I would recognise my own writing and hopefully accept that I had indeed taken it. The only drawback is that sometimes I don't know what my own notes mean. The other day, we saw that I had started to write 'AH'. We both stood there for ages thinking AH? AH...? The next day, I came into the room, looked at the diary and said 'Oh, so I took my antihistamines last night then'! Dawn xx

Thanks for all the replies, while I wouldn't wish this on anyone, it's good to know that we all experience the same things! I've a little update today, the DVLA have finally written to me! If I'd known that all I needed to do was have a whinge on a forum to get results, I'd have done it weeks ago! I've to make myself an appointment (always, the sah'r doing the running!) with a doctor in Northampton to be assessed for my ability to drive. I'll make the call as soon as I've worked out my other half's shift pattern for the coming weeks. And I've just re-read that and thought to myself, if I find that awkward should I be driving? The pattern is literally earlies/lates. Still, I feel much more positive today, thank you for all the pick-me-ups! Dawn xxx

Ah see, and there it is! A bunch of lovely people telling me that they know what it's like and sharing why they know. That's why I love it here so much. Thank you all, I feel a lot happier and less lonely than I did this morning!

Hiya Gill, thanks for that, the only source of support I have apart from my partner is this site! Thank goodness you are all here. I have contacted my local Headway, we need funding. We can't get funding until I get a care manager. Even when we do get funding, I can't drive there. It's all just wait wait wait. I had some counselling from the corporate facility my employer pays for. It was useful and the chap I spoke with had a head injury himself years ago, so that was good. But, you only get 6 sessions and he was talking more about my upbringing than my current issues. It was useful in sorting out a few old hang-ups, but not for what's currently going on. I'll speak to my GP and go from there. Thanks for the hugs, they were needed! Dawn x

Morning! I'm now 6 1/2 months post sah. Apart from seeing my GP every 6-8 weeks or so, I have had absolutely no aftercare whatsoever. Is this normal? I've to have my blood pressure checked every 2 weeks and even this I do myself. There is a machine at the surgery where you put your arm in a sleeve and it prints out your BP, you hand this in to the receptionist and that's it. I have been in touch with Headway, we are waiting for funding. Headway have applied for me to have a care manager, I have called the Young Adult team (me, a young adult! ) and we are waiting for a case worker to come available. I am waiting for the DVLA to give me their decision. I am waiting for my 6 month check-up results to come back from Oxford. There's a bit of a pattern developing here and I'm getting frustrated. I'm finding it hard not to think dark thoughts, I feel a little like I'm being fobbed off my people who a.) know I'll forget about them in an hour or so or b.) know I don't have the mental capacity to be more assertive. I am sure that this is not really the case, but I read on here about some of you seeing neurologists and having your questions answered. I haven't seen a neurologist since the day I left hospital. I am really starting to feel forgotten. Because I am 'doing ok' it seems that it's been decided we don't need anyone else. I don't even know if there are services I should be accessing and simply don't know about them. I'm sorry if I'm sounding a bit negative here, I just wondered if I'm missing something obvious? Dawn x

Hiya, I've just had a call from the local Law Services service (no idea how to label that any better!). Because my partner works full time, I am unlikely to get council tax benefit or housing benefit. I'll be lucky if I am entitled to ESA because I can walk unaided and wash myself...see how all these things that are huge achievements to all of us here are suddenly a disadvantage when dealing with the government! Even if I am entitled, it will be £67.50 per week for the first 13 weeks. I'm so mad I feel like I could start lobbying, if I could hold a thought in my head for more than 30 seconds that is! The government state that a couple living together need £105 per week after rent and council tax to live on. Where do the government do their food shopping or buy their petrol? Maybe their cars run on thin air. I'm told I will be assessed on my ability to do any work, not the job I usually do. So...if I can manage to do anything at all, I'm not entitled?? Are they mad! We can pay our bills with my partners wage, but that's it. No clothes, no M.O.T's, car tax, tyres etc. No repainting, no new toaster when the old one goes on fire. It's not very realistic is it? I've been signed off until August so going back to work isn't an option for me at the moment. I feel really bad for my partner, it's not his fault that I've had a brain haemorrhage! Sorry for the rant, I'm so mad I could hop! Dawn x

Hi Juliette, I don't get tingling in my face exactly, it's more like a weird twisting sensation. It happens mainly above my lip on the right hand side, below my nostril if that makes any kind of sense. I get it in my tongue too and this causes me to bite it quite often..painful and annoying! I mentioned it to my GP but he seemed to think this is just one of those weird sensations that occurs after sah. Dawn x

Brilliant link Karen, I too have posted it to facebook!

Hi Sandi, how fantastic to have a light at the end of the tunnel! I hope all goes well for you xxx

Morning After my sah, I had the usual brain itchiness, weird watery feelngs over my brain etc. This all faded with time, thankfully! What developed next, was an itchy face. All over my face - I will get so itchy that I can't sit still and calmly for any length of time. I mentioned this to my GP yesterday and he has prescribed me one-a-day antihistamines. He says they will take a couple of days to get into my system, but already the itchiness is calming down. Another absolutely wonderful result is that they make me sleep! Yay! I haven't been sleeping for weeks so this is a huge relief. It just goes to show that no matter how insignificant you think your symptoms are, it's worth telling your GP Dawn x

Hiya JanetM, welcome to BTG, it's nice to meet you! Everyone here is ever so friendly and willing to share their experiences, providing lots of relief from worrying about all those weird little things that now happen and are so difficult to describe to others who haven't experienced sah. Dawn x

Hi Alison, I only spotted your thread this morning, what a time you've had of it. You sound like a very positive person! My partner found this website a huge source of comfort and information while I was in hospital, I'm glad you've found it already. It continues to calm us both even now and I'm sure it will continue to do so for some time. I look forward to reading your updates. Much love, Dawn x

Morning! Thanks so much for the replies! I get so much reassurance from hearing other people's experiences and stories. It's so important to me to know that I'm not alone in all this. Lin-Lin, hello! thanks for the warm welcome Kaz, hi! I like your mantra, think I might plagerise it if you don't mind! I'm having a much better day today. I got myself some herbal sleep remedy. My GP suggested I don't do this and simply wait for my sleep patterns to sort themselves out. Well, I tried that for 6 months, but I've been surviving on 4 or 5 hours sleep per night and felt that this was much more detrimental than taking a bit of valerian. I've just had 10 hours sleep and haven't had any scary incidents for a whole 24 hours, what a relief! Dawn x

Morning! When I left hospital, I had daily headaches. I read on BTG that water would help. I immediately started drinking 2 litres per day and the headaches, for the most part, vanished! It had no impact on the fatigue though unfortunately. I find that no matter how much I drink in a day, if I over do things I'll get a headache and have to resort to paracetamol. Dawn x

Morning Since my sah, I have been getting jumpier and jumpier. The slightest thing gives me a fright out of all proportion. As a little example, at Christmas, my partner opened a bottle of champers. Although I knew he was doing exactly that, when the cork popped I got such a fright I burst into tears like a little girl! I was extremely tired after my tests yesterday and went to bed at about 23:00. I got to sleep straight away but woke up about 3 hours later. I got up to use the loo and my partner spoke to me from the living room. I couldn't see him and this disembodied voice gave me such a fright that I fainted! I have of course frightened the life out of poor Andy and we were awake until after 5 am. Typically, my GP is on holiday today. To be fair, I'd had very little sleep the night before my tests and I had contrast dye for the angiogram. I'm assuming that my rather extreme rection to the only other person who lives in this house is down to exhaustion and the contrast dye. Has anyone else had experience of fainting with fright? Dawn xx