JayKay

Keep positive, Donna!! Thank you ladies I know I'm not a fraud really - I got a bit cocky and did stuff 3 days running.... and ended up in bed early last night and slept all morning Of course, now I'm wide awake at 1am. Hey ho. I am supposed to be doing some typing for the respiratory team at the hospital, and have an appointment tomorrow to see the secretary (a friend) to discuss what they need doing. And having pushed and pushed for this I'm now terrified. How on earth will I be able to do 3 hours/day, which is what they need?! I could do with the money though, and you're allowed to work 15 hours. I haven't even told my partner because I know he'll go ballistic, but frankly, we need the money.

Thank you Sandi for posting on here - I missed this thread as it was already old by the time I had my anni! As for me, my Surgeon said no one could have predicted I'd have anything like this. Ok, I'm overweight and pretty sedentary, but I don't smoke or drink, don't have high blood pressure, cholesterol is good, no diabetes, 3 days before I turned 50... HOWEVER, I was doing 2 jobs to make ends meet and one of them was in a very stressful department in our local hospital (in fact, 2 women in question are still under investigation for bullying and disciplinary matters). My specialist nurse at Queen Square said that in her experience EVERY SINGLE PATIENT she had with SAH said they were in a high-stress job, or working 7 days or week, or similar. She (and the surgeon) said that although we can't pinpoint any one thing that causes aneurysms to form, stress is a huge factor in causing them to rupture..... Interesting, no?!

Hi Sandi - and welcome. Sorry, thought I'd commented before... I SOOO get where you are coming from! It's nearly the 12 month anniversary of my SAH and I've been in denial most of that time lol. I didn't realise how ill I was; I was always able to respond appropriately to questions in hospital even if I don't remember everything now. I really thought I'd be back at work in a month or so. Ha! That was wishful thinking. I kept hitting that brick wall: I'd think "oh I'm ok now" and overdo it and then come crashing down. It still happens to a certain degree, but it's taken months of my support system (psychologist, GP, family) saying to take it easy and listen to my body for me to realise it's OK to say no to people, it's OK to rest, it's OK to not be able to do as much as I could before. It doesn't make me stupid or weak, it's just the way it is. Lynne's psychologist wrote this in a letter to her and I copied it onto my blog so I could find it again: 'When it becomes clear that your symptoms are permanent, to some extent, then finding a new life that works is far more successful than trying to regain a life that has been lost.' (thank you Lynne!) That is probably the hardest thing to do, but I'm slowly getting there. Being the main breadwinner at the time of my SAH, I was very worried about money and it's been a LOOOONG haul. We nearly lost the house over it, and just before Christmas I thought my 12-year relationship was over too, but we're working on that and we're good now. I haven't gone back to work yet, although I do little bits for one of the Physicians I used to work for, and I'm relying on benefits (in the UK we have something called ESA which you might read about elsewhere). Because I was temping, I didn't have an employer pressuring me to go back to work, but the downside of that is, what new employer is going to understand I need to rest and maybe work 1 hour one day, 3 the next, and have to take the next 3 off!!?!? So, really, I just wanted to say, TAKE IT EASY. Be kind to yourself. Listen to people who tell you it could take 18 months - 2 years. It sounds a long way off, but bit by bit you will realise you are doing so much better than you were. Take care!

I'm so excited (as some of you will have seen on Fbook) because I got a letter from the Jobcentre saying I don't need to go to Tribunal any more, because the decision has been "revised in my favour" and I have been found to have Limited Capability for Work! So happy!! They say they will write and tell me about arrears etc separately. I can't tell you how happy this made me. The psychologist was very angry at the ESA doctor for failing me, so she was one of the first people I told (well, left a message for). I still feel like maybe I'm a fraud, and maybe I should be pushing myself to get back to work, but I know that the GP and psychologist, as well as my partner, tell me to take it easy. Financially, I would rather be working, but I have come to realise I'm not back to "normal" yet. Anyway, don't give up hope if you have been turned down for ESA. Get the MP involved, get medical reports.... it's worked for me!

Hello Win! Lovely to "see" you here. I wasn't online when you had your SAH as mine only happened in Feb 10, but it's lovely to see that your daughter got help here. It's a wonderful community How are you doing now?

Hello and welcome! I second what the others said - it's early days for you. Any brain trauma (and you've had that even if they couldn't find a cause) will make you tired, so make sure you listen to your body. I'm still working out how to do that 11 months post-op LOL!! Take care

Hi Pete - don't worry about a plain old consultation. They always call you back for appointments after any op (if you have any queries about how the hospital works, I am a medical secretary by trade, so I know some of the ins and outs!). However, when you are there, I would mention that you have problems with concentration etc. Maybe take a list, that you can jot down over the next few days as the questions come to you. I was very much helped by the neuropsychologist: she did loads of assessment tests so we could pinpoint where my problems lie, and then we were able to work on coping strategies. Take care!

Hi Pete! Welcome and glad you found us. I can't believe you're back at work after 3 weeks - or rather, I can believe it but I'm glad (in a way) I was in hospital for 6 weeks in all, and that the people around me were much more aware of how serious it was than I was. I was all "oh I've survived this, I'll be alright" but I've been like a stupid fly hitting the windowpane over and over again... until now, 11 months on, I've really realised that I do have to take it easy and listen to my body. I was very lucky with my aftercare - first of all, the National hospital have a specialist nurse, and she came to see me, gave me the brain and spine leaflet (you can view it online on their website), told me to get my family to read it, and gave me her mobile number saying I or my family could call any time. Then, I was sent back to my local hospital, and there I met with the social worker and people from the Stroke Association. I was only allowed home with a full care package (and this, my partner had been told by someone to insist on, but I don't know who that was...!) and I've had an OT come to my house, as well as sessions with the neuropsychologist at the rehab place. Really, reading everyone's posts, it makes me realise we should be campaigning for equal aftercare packages across the NHS!! Who's with me??

Hi everyone - not sure if this is the right place for this thread but I'm sure the mods will move it if not! I have finally taken the first step towards setting up a support group with the help of Different Strokes. They are sending out a start-up pack to me and then we'll have a meeting and start the ball rolling. They will apparently do a mailshot to all the local people they have on their database, plus local doctors, physios etc. I'm really looking forward to having something to get my teeth into, as I'm gradually feeling more energetic. It's my 11 month anni-versary next Monday If any of you are local to me (Watford) then don't hesitate to let me know so I can add you to the mailing list!

Hello Ash, and Happy New Year to you. I'm sorry that mum's recovery is slow and up and down. All I do know is that after my mum's stroke, she continued to make progress for ages. It's about 4 1/2 years on now and although she still has aphasia she can speak most of the time (if she's not tired); on the physical side she has come along in leaps and bounds - she was bedridden and in a wheelchair for over a year I think it was, but she kept at it and her right side is much improved. It's not back to "normal" but she can do pretty much anything. At first we thought she'd have to go into a home after rehab, but she showed us, with sheer grit and dogged determination, and she lives alone now. She is 78 and has a cleaner and a home help twice a week each, but otherwise she does everything herself. Send mum our love xxxx

Hi Karen! I echo everything Lin-lin said I thought I'd go right back to work, either as an executive assistant or medical secretary. How wrong was I ! As the weeks went by it became more obvious that I was not the same person, although I look fine and seem "normal" to people I only know in passing. My family can see the difference in me, and this is in fact leading to quite a few relationship problems that we are working on. Because I feel totally fine, I was in denial for a long time. I can now see that, although I'm "fine" my personality has changed a little, and I underestimated the problems caused by my short-term memory issues. I vowed early on to live a less stressful life, and as my GP has forbidden me from going back to work at the hospital where I worked when it happened, I have realised that he is right - there is no way I can put myself through that kind of stress again. I had one wake-up call, I might not be so lucky next time! I hope you don't rush back to work. I was lucky because my GP and family, and the neuropsychologist, all insisted it was way too early to think about it when I said I could cope. I am glad for their insistence now. I do a little private work for the consultant I was working for before, just taking messages on a mobile and doing a bit of filing, fitting it in around how I feel and working from home. It's ideal for me but obviously it's nowhere near a salary! The typing was taken over by another secretary but when she's on holiday I do the odd tape or two, but it takes me much longer than before which is frustrating because I prided myself on my extremely fast and accurate typing. You just have to adapt and relax! Take care

Hello and welcome! This place has been such a wonderful help to me - I had my SAH on 10th Feb, so it's my 11-month Anni-versary on Monday next! It happened 3 days before my 50th birthday.... Once I had mine clipped the surgeon was so reassuring - she said I was less at risk of a bleed than most of the people in the country because my aneurysm had been clipped whereas there are hundreds of people walking around with aneurysms that they know nothing about. She was adamant that the clip was secure and there'd be no problems, and as she's a lead surgeon at the National Hospital for Neurology and Neurosurgery I choose to believe her They don't even want to do repeat scans on me, and I've just been discharged from follow-up. It's very early days for you yet. Oh how I used to hate hearing that when I was 2 or 3 months post-op! I thought I'd be back at work within weeks, but as time has gone on I've found the fatigue so debilitating, as well as the cognitive issues I've had, so much as I've tried, I've discovered that overdoing it just doesn't work, and to listen to my body. It's taken me months AND sessions with a neuropsychologist! It gets better though. My last bout of real fatigue was early December, after a weekend visit from family: all we did was have coffee 2 days running, and have two dinners together in 3 days..... but afterwards I was out of action for FIVE DAYS! I don't come on here quite so often because I've realised that if I turn the computer on I can end up sitting here for 3 hours and before I know it I'm a wreck. But the forum is so great because there is always someone else who knows what you are going through. Keep smiling!

I'm so sorry you're going through this. If the GP has offered you propanalol I'd try it for a bit. There's no shame in it - you've been through a lot! Keep smiling

Hope you can get some answers from the doctor - maybe they'll suggest referral to a neurologist? Whatever happens, chin up!! We're here if you need to talk...

I know what you are going through! Monday marks 11 months since my SAH and I seriously thought I'd be back at work after a couple of months. ha haha ha! I am getting more good days than bad now, but I have been forbidden from going back to my old work as a PA or medical secretary by my GP who says it's too much stress. I do a bit of private work for an endocrinologist I used to work for (answer the mobile phone, do a bit of filing etc) but I can do that from home and fit it in around how I am feeling. As my SAH happened when I was doing 2 jobs because my other half was out of work, we eventually got ESA and mortgage interest relief, thanks to the debt guy at the Town Hall. It doesn't last forever and the mortgage interest relief has been halved so I'm glad the other half has found a job now or we'd be in a real pickle. Are you going to rent when you've sold your house? If you are on benefits and renting, I think you might be entitled to housing benefit, but check with CAB. Good luck!!

I think I was told it would be ok after 3 months too but I was way too tired to even think about it! I did however have the chance to join a chair-based exercise group and I've been doing that once a week. I also try and go out and walk but tire easily and don't do any sustained exercise, although i'd like to. I, too, will try and do some swimming in the New Year - see if that's not too tiring!

I'm sorry to hear of the latest development - what a lot you guys have to put up with. I'll be thinking of you and hoping it all goes well when he comes home!

Gosh, poor thing! Hope the aspirin sorts it for her.

Glad to be of help! Tell you what though, i wish the damn clicking in my skull would stop - it still does it nearly all day, every day - 10 months on! Keep smiling!!

Another Anterior communicating artery aneurysm here, and at first I had major dizziness and balance problems, but over time it has eased a lot. I just realised the other day I was lifting my feet normally when I walk - suddenly I was just walking better! Like Penny said, even the most eminent doctors don't know it all - and they KNOW they don't know it all! Every person is different.... I do hope it eases for you but relax, and take it easy x

Hello Bay, and welcome! I'm sorry you are having such a hard time. If I can try and give you any advice it would be to RELAX. Easier said than done, but you need to find time for yourself, so you can chill. Relaxation or meditation tapes (I have some on my iPhone) are very helpful with this. I also found the neuropsychologist very helpful - the hospital referred me. She helped me with counselling and then did all the assessments so that I now have a report that explains all the issues with my memory, facial recognition etc etc. Also don't forget the 3 litres of water a day - try using low cal squash in it to make it more palatable. Last but not least, it DOES ease with time. I felt like someone flicked a switch at 9 months post-op. I'm not back to "normal" yet, but I get so much less tired, my memory is improving, I can tolerate noise.... lots of things are much better, but I didn't realise till afterwards! My head still makes that "tick tick" noise, and certain areas of my scar are still tender (in front of my ear for example), but I'm sure it'll go eventually. Yesterday I saw the surgeon at Queen Square and was discharged from follow-up. When I told the reg that I am going to set up a support group locally, he said that was essential work because patients need to speak to other survivors. He said it's not that they don't believe the doctors, but it's easier to hear from other people who've been through the same thing. I do hope you find BTG helpful. Take care x

Hello there! You poor thing! But don't worry, lots of us here have been through the craniotomy and subsequent pain/swelling etc. I had a huge lump which was a CSF leak on the side of my temple for 6 months but it finally went. I looked like the elephant woman lol. There are pictures on my blog, and you can read my journey here if you like: I know when I first had my SAH and craniotomy it really helped to read the story of an American lady who blogged about hers. That link takes you to every post tagged "the brain thang" lol. Well, I've now passed the 10 month mark and I'm feeling so much better. For the longest time I didn't feel like there was a light at the end of the tunnel, but don't worry, there IS! I hope you get some peace of mind by chatting to us loons on here. Take care x

Wow! Brave you I'm fascinated by stuff like that, but don't know if I'd be as fascinated if it was on me lol....

Great Christmas present! I've heard of Lyrica from people on the psoriatic arthritis forum I sometimes visit. Don't know any more than the name though Good luck

What great news! I don't find myself worrying about what's going on inside my head any more, but I am in a research programme so I'm having an MRI done in a couple of weeks to see what's what. It'll be interesting to hear what they have to say. Keep smiling