JayKay

Sounds very interesting! What was the outcome from the Johns Hopkins guys?

I can sympathise on the weight front! I'd lost 1 1/2 stone before my SAH, and in hospital I lost a bit more because I wasn't eating.... now, a year later, I'm back at my heaviest, feeling horrible and with no clothes that fit As for the "tight head", I've had that on and off since my daughter was born, 20 years ago (by C-section, no pushing!!), but, touchwood, nothing since the SAH. I always wonder if it was related... As none of us are doctors, I can only urge you to go and talk to your GP. It's really hard coming to terms with all we've been through, and you (like me) seem to have the added financial worries, so I really feel for you right now. Have you tried meditation/relaxation? I know I've mentioned it before, but my OT recommended it, and I think it's been very helpful. I do it with the help of an app and some podcasts on my iPhone! Take care x

They are rather horrid, aren't they?! I've had about 3 or 4 in my life, all before my SAH. The jagged, bright light got bigger and bigger and then eventually subsided. It made me feel really sick but I never had a headache with them. I knew instinctively at the time that it was brain related because it persisted when I shut my eyes (hence it couldn't be my eyes that were to blame). I have no idea if there is any link to the SAH but I just put it down to "one of those things".... ETA: There was never any trigger as far as I can tell. They just happened out of the blue when I was quite calm.... unlike the SAH which was most definitely triggered by extreme stress!

Oh Lynne, you are sweet!! Well, my grandfather was a professional photographer and I grew up around his studio and we were the subject of many many photos as children I have been taking photos with a single lens reflex camera since I was a teenager and I practised on my daughter a lot lol. I haven't really stopped, but I never thought I could make a go of it - until now. Your words, and the encouragements of my friends, are really boosting my confidence!

That is true! I definitely won't be going back to being a PA or secretary, but I did think I could cope with a bit of plain audiotyping... I am a Trustee at the local community centre and they are very supportive. I pop over there regularly to see if I can help with anything and it's been a lifeline this past year. I have also started to develop my photography skills, especially with newborn photographs. You can see my photo blog here, I hope you like 'em! The friends whose babies I've photographed are delighted and are spreading the word so that I can do this for a living, bit by bit. One friend is hooking me up with the maternity ward to see if I can advertise there because although they have one company who advertises, I've heard on the grapevine that they are a) expensive and inflexible and c) apparently, not very good! Fingers crossed then.

Hi Nessie, and welcome to the family. Reading your post reminded me too of what it was like in the early days, but all I can say is, it has got better! I've just passed the one year mark. I still don't like noise much - if there are kids screeching that's all I can hear, even if it's a long way away - and I've only just started to listen to music again recently. I like peace and quiet. It's been difficult with my partner too: although I feel "normal" I'm obviously slightly different to before, and I don't have the energy to go anywhere so we never go out and do anything much (i just turned 51 but I felt 30 before this happened lol). Anyway, I found when I had my SAH that reading about other people's recovery really helped - I was all "ooh that's how I feel too" when I read them, and so I blogged with the blessing of my doctors. You can read my blog here, but all the posts to do with "the brain thang" are here. Keep smiling and keep coming here to join us, when you can. Take care xoxo

Welcome to BTG! You are among like-minded people here The main thing, I suppose, is to LISTEN to your body and when you are tired/have a headache, you've done too much so REST! I'm still learning to do that, by the way, and I've just passed the one year milestone. I am still not back at work because I keep pushing myself and ending up in a heap on the floor I'll get there eventually. Anyway, keep smiling

Poor you (and him!)... My short-term memory is pretty bad and this has led to some tension with my partner. He gets frustrated with me, but although I do sometimes get frustrated, most of the time I suppose I'm oblivious lol! I have found ways around it: I use the calendar in my phone for EVERYTHING because then I can put reminders in so it beeps. I use a white board, as per the OT's suggestion. I also kept a diary earlier on in my recovery, and I blog which has been very therapeutic. I do find that if I write something down I tend to remember it more. I still do have moments where I put something on the stove, turn away and completely forget about it, but I try and concentrate and only do one thing at once, and that has helped A LOT. I have also done quite a lot of Sudoku and word search puzzles to try and "exercise" my brain, which I think has helped too. I don't think anyone can predict how your hubby's memory will progress, but I am wishing him all the best.

Well done Lynne, you are always so positive and an example to us all! I wish you all the success in the world with the Shaw Trust! I have also tried going back to work; well, doing a bit of work for the hospital where I was working when the SAH happened (temping, on the bank as we call it). Well, I managed 5 hours over two days, two weeks running, but that's as much as I could do. I was really whacked out by it. I also do the messages and filing for my lady Consultant that I used to work for, and she says the girls I was typing for told her they were worried I was doing too much because they could see it tired me out. That's so strange, because they can see it and I can't!! I suppose we are all different. Part of me doesn't want to sit around at home all day because I fear that I'll just get more and more deconditioned; but part of me can see that as soon as I try and push myself I set myself back even further. So frustrating! Keep it up Lynne

Welcome to BTG! Yes, a lot of people are misdiagnosed - especially if they are not particularly drowsy etc, but I've read on a medical website (I'm a medical secretary) that a SUDDEN headache with other symptoms should always be treated as a bleed unless proven otherwise, i.e. by a scan...... Maybe we should try and raise awareness? I don't know.

I would too! It helps to know you are not alone, but you do need to bring it up with your GP. Have you tried meditation? I do that as well as the "brain breaks" and I'm finally (one year on) learning to take it easy. Smile! (Edited to add I used to have panic attacks as a teen, so I know how awful and real it can feel, but hubby did the right thing to speak calmly to you. I have learned to "talk myself down off the ledge" as it were over the years. Just last week when I had that awful stomach bug, I was vomiting so much it took me right back to last year and I had to keep reminding myself "you haven't got a headache, or a stiff neck, or photophobia - it's just a bug". Take care)

I had been "fired" (not "made redundant") 6 months before, and was temping in a very stressful department at the hospital. In fact, the two women concerned are now under investigation..... That day I could not even get to my desk because of the deliberate mess they made with piles of medical notes etc; I had a meeting with HR about it at lunchtime, and I was told just this week by a colleague that I was grey that day, and not my usual self. I had a stonking headache. However, I still went to my Pilates class after work, thinking, I've paid for it I'd better go. I remember NOT doing the exercises the others were doing because I was too unwell/tired... so I don't think I overdid it at all. Came home, sat down and POP. That was one year ago TODAY!!

Oh that's fantastic news! Hope he goes from strength to strength. And the building work? YAY!!!

This is a very interesting thread! At first I was sure I'd be right back at work within a couple of months. How wrong was I! But like Lynne, I've come to understand that it doesn't make me weak. It's just the way it is. I might regain some energy, I might always stay like this, but at least I know I'm better than I was 6 months ago. Having the SAH made me wake up and realise that I was letting the bills dictate what I did for a living rather than making the bills fit around me.... I am determined to never go back to working like I was before. We might be poor, but at least I'm not so stressed!

Oh sweetie, that's such sad news, and must be so hard to bear. Don't hesitate to ask for help from the people Anya mentioned, and others, and you can come on here as much as you need, to talk. Big hugs xxxxx

Still not back at work, at least not full time. I am on ESA and I do a little work for my Consultant (who I was working for before). Just taking her messages and making sure her private clinics are booked properly. Prob 3 - 4 hrs a week. I started to do some typing on the bank at the hospital on Monday.... and on Wednesday I came down with a massive bug so I've spent several days lying prostrate, vomiting etc. Timing eh?! I didn't tell my GP or partner because they think I'm not ready, and I want to prove them wrong! I won't be going back to my job as a PA though, that's for sure. Life's too short!

Oh sweetie, I'm sorry you're having to go through this! There's another young girl going through the same thing - Amelia just joined recently. I've seen this from both sides: my mum had a stroke 4 years ago, and at first we didn't know if she would live or die, be brain damaged or fine, paralysed or not. She was already in her 70s and the doctors' answer was always "I don't know" to any question we asked, because each brain injury is different. Then, nearly a year ago, I had my SAH. My daughter was 19 at the time and it was a very tough time for her, especially as her dad doesn't live with us so it was just her and my partner trying to get through it together. All I can tell you, like Lynne, is that the brain can make an amazing recovery! My mum still has trouble with her speech, but at 78 is living independently, with just a home help and cleaner. She had MRSA, C-diff, the lot, but she's come through it fighting! As for me, I'm doing fine and have come a long, long way this year. Anything you want to ask, don't hesitate. Keep smiling. Think positive. You are not alone. Take care xx

BF is usually boyfriend! My daughter has a BFF which is "best friend forever", her best friend from school.

Oh Amelia - I've just posted on the other thread but now I see what the history is behind your loss, and that's enough to freak anyone out! My neurosurgeon told my daughter that she was not at risk, but if she had had two direct relatives with aneurysms then she would be offered screening (my grandmother died of a haemorrhage, but that's not to say mine was hereditary....). I am glad you are getting referred. I would not be surprised if your symptoms were indeed due to anxiety, with what you've been through, but it would be nice to get it checked out. If you were to be diagnosed with an aneurysm, then you would be able to discuss it with the right people and choose treatment. As you can see on here, lots of people get their aneurysms coiled (that wasn't an option for me, I had to have a craniotomy) nowadays and that is much less invasive. Whatever - we are not there yet!! Let's be positive, eh? Anyway, as I said before, glad you found us and don't hesitate to vent on here if you need to. You are not alone. Hugs x

Hi sweetheart, and welcome to BTG. I'm so sorry you lost your mum like that - and just before Christmas too. My daughter was 19 last year when I had my SAH and I have thought a lot about what it would have been like for her if the outcome had been different. I'm glad you have found us (I didn't see your other post yet)! If you need to talk, you have found the right place. Let us know if we can do anything. Take care!!

Gosh, poor you guys!! Lynne's reply made me well up, actually.... I hope Dylan has managed to go on that other website - it sounds just up his street. Can you tell him I look on my scar as my war wound and I wear it with pride. It reminds me how lucky I've been and how far I've come. I hope he comes to see his like that too. If he's not too squeamish, you can see the massive scar here, just after the stitches came out... It looks huge and messy but I swear, 10 months on you can't even tell it's there - it's amazing. Not quite like Harry Potter's scar, but close eh?!

Hi Sam! Lovely to "meet" you and welcome to BTG. Gosh you've been through the mill, and back at work already? You ARE clever! Take it easy - don't push yourself, and see you around

Thinking of you both and rooting for Rich's op to go swimmingly!! Take care x

I'm sorry you've not been feeling too good As for me, I had nausea and dizziness very bad in hospital, which is why I was kept in for so long. Since I've been home, it's happened quite recently, actually, when I'd overdone it three days running - it took me right back to the early days!! And I'm 11 months on! Rest, lots of water, pace yourself... hope that's enough to get rid of this horrible feeling! Hugs!

Well my anni-versary is coming up soon - 10th Feb is when it happened. 13th Feb is my birthday and I'm having a party on Sat 12th (anniversary of the op actually!) to celebrate that 50th that I missed last year, and to celebrate one year of being a new woman You might have seen the invite I prepared on my blog. I think it's important to mark the occasion, although I prob wouldn't have if I hadn't had the excuse that my birthday was cancelled last year! As for revisiting the spot where it happened, well that was on my sofa in my front room.... and I burst into tears when I got home from hospital 6 weeks later and sat in the same spot. It all came rushing back to me then. Now of course, I never think of it. Onwards and upwards, everyone!