Leo

Thanks for the compliment on my name. Made me smile! You have an incredibly amazing attitude... Puts me to shame Yes, we are all survivors and its wonderful that we are all still here to tell the tale and smile about it. Thanks for the positive mojo!

Hi BlueDay, Nice to see someone from London! I haven't experienced aphasia (I don't think) but I do struggle with words sometimes, especially when tired. So many of us were diagnosed with migraines for years before our SAH ... Am tired now so may not be especially coherent. Sorry! Leonie

Hi Lynz, I have cotton wool head days quite a bit. Was hoping they were associated with still having daily headaches and being on migraine medication (which sometimes helps). I find the balance thing annoying because just when I think I am doing well - there my leg goes and I end up on the floor looking drunk/daft. I have a folding walking stick that I lug around. I do have good days where I almost feel like the old me but to be honest I am still having trouble accepting my new limitations/changes. Overall, it is getting a bit easier but it is SO FRUSTRATING not being able to do what I want, when I want to or say what I want to as eloquently as before. But my speech isn't slurred, I just can't find that perfect word anymore. Oh well, time to rest. Just remember, there will always be good and bad days. Even for those who haven't been through what we have. Take care and be kind to yoursself, Leo xx

Debbie, I used to live in Oz for a while - Vegemite is vile!!!!!!!!!!!! Didn't think anything could be worse than Marmite but I think Vegemite just pips it at the post

I hate the taste of Marmite. As I child I hounded my poor mother into buying it for me and then I cried when I tasted it! It's foul. Even the smell makes me feel sick ... but then I do love smooth peanut butter. No accounting for taste is there???

Hi Luisa, Am not sure what the rules are in Spain where you are but I would seek a second opinion about whether or not you should be driving if you have double vision! Take Care, Leo x

Hi John, I have quite huge gaps about my time spent in hospital - and such a long time it was (6 weeks). People have had to fill in the blanks which can be quite unsettling sometimes though I manage to laugh it off in front of them. But I do remember the oddest things - the nurses who were kind and those who were definitely going for the title of Nurse Ratchett! You are still very early on in your recovery. And whilst my SAH was two years ago now, I am still recovering. Its a much longer journey than I ever anticipated but I'm very glad wev'e all made it! Hope you have a good day, love Leo xx

Good luck with your scan Karen. Will be thinking of you xx

Hi Laura, Jumping straight to a hysterectomy does sound rather radical if you haven't had any other investigations yet. My periods have become more regular yet distinctly more painful since my SAH. I haven't said anything to my GP as I still need to sort my headaches out. I'd go back to your GP and ask for a referral for a scan at your local hospital. You may have developed polycystic ovaries or any number of things which do not require a hysterectomy - especially at your age. Doctors! Love and hugs, Leo xxx

That is really good news. Isn't it shocking that the social security doctor told you to get used to living with a numb shoulder? Like it is nothing. The inconsistent treatment and advice we receive is dreadful. But like you say, thank goodness for the help and advice available on this forum. Hope you have a good weekend - and don't go lifting anything too heavy with that shoulder now that it feels a bit better! With Smiles, Leonie x

Hi Nurianna, As for the antidepressants, I think the only way to make an informed choice is to speak to your GP. They make think that you do not require them but may refer you to a counsellor due to PTSD or something. But you'll only know by taking the step and opening up a bit more to him/her. I am glad that you have an appointment with a private traumatologist - is that the same as a counsellor? Have never heard of that specialism but then again I had never heard of a SAH until it happened to me! Its a shame that the wait was so long an frustrating for you that you felt pushed into paying for it yourself but on the other hand, hopefully this is the start of something positive for you. Tina, I am glad that I am not the only one wandering around with a semi frozen face. I am making light of it because in the scheme of post-surgery complications/issues, this one I can live with ... Hope you all have a good evening, Leonie xx

Hi, I have just passed my 2 year anni on New Years Eve! Unfortunately, I too, still face issues/problems everyday following my craniotomy. I have headaches practically all day everyday. They can be extremely debilitating so I can understand that you are feeling depressed. They have had a profound effect on my day-to-day life so I am never without a reminder that I have survived a SAH. You are the first person to describe exactly what has been happening to me in regards to banging my head a lot! I have worked out that when I have a very bad headache or am over tired I become clumsy and have a tendency to fall over (was fun in the summer wearing skirts!) and bump into things. I didn't even have so many bruises in primary school. To be honest my doctors seem unconcerned. The swelling around my scar has subsided gradually but it is still visible although it doesn't bother me. The heaviness around it and above my eye has not changed and I still look as if I have had botox as the right side of my forehead does not move. However, it is none of these issues have been deemed a surgical deficit so I am trying to negotiate this new way of being myself. It is not always easy and I do find myself getting extremely cross with myself or crying in frustration/depression on bad days. I just wanted you to know that you are not alone with your symptoms or in feeling depressed and out of sorts. I hope that you have somebody close to you at home that you can share your thoughts/fears with. Hugs, Leonie

Adam, I am really sorry to hear that your employers are treating you in this manner. I know its hard. I didn't expect to be off work for over a year either and it is very frightening being in limbo neither feeling as good as before the SAH nor knowing if/when you can return to work in the post you previously held. But there is a lot of information and support available on this website. Please try and see if your GP can refer you to occupational health people who specialise in neuro patients. Services are patchy across the country but if you are met with a no, try and push to see if your local hospital have stroke dept. who will have OH specialists who can liaise with your employers on your behalf. I think most of the problem with both employers and people in general is ignorance, not malice. Just don't give up! Oh and congratulations. You are a survivor! Enjoy yourself on the 8th. Leo x (hope this makes sense as am tired and need a break now)

That is awful. Your Mother's case obviously demonstrates a gap in the system. It seems you have tried (& to some extent the hospital have tried if they keep referring her and her admission is refused) just about all I can think of trying. I guess until you have the meeting there is nothing you can do but wait and try and keep yourself together as much as possible. If she does come home before you all feel happy with the decision, I do hope there is enough support available in your area so that your Father isn't suddenly left to cope alone (during working hours when you cannot be there). Best Wishes, Leo

Hi Caz, That seems like very good advice. I'm having problems turning my brain off. Cannot seem to concentrate on one thing at once for long as am always thinking of or trying to do the next thing at the same time. have been told to stop this but ...easier said than done! Congratulations on going back to work xx

Thanks everyone. Sometimes it is really hard to know what is "normal". But I guess my tiredness is normal. It been nearly 2 years now and some days are OK but some feel like I have been hit in the head with a hammer - again. As for my bad mood ... maybe chocolate will help! Penny - I am full of admiration for you. I can only manage walking on the treadmill for 10-15 mins and then the recumbent bike for the same! Take Care Everyone, Leo xxx

Hi Bessie, I'm sorry you (and your Mum) are having such a terrible time with Kings'. It seems nearly half the people on this forum have had serious issues/struggles with the care they have received at one time or another following their SAH. But, it is well worth sticking to your guns and asking questions when you are confused/unhappy. Don't be put off. I haven't heard of the Sapphire Wing but it might be worth asking the consultant if they could refer her to the Wolfson Neuro Rehabilitation Centre in Wimbledon. It is part of St. Georges' Hospital. The wait might be shorter - if they accept patients from Kings. It only has about 32 inpatients. Best Wishes, Leo x

I have been off work for over a year so the return has been stressful on a number of levels. It wasn't until a couple of months ago that the registrar at the hospital told me that about (in his opinion) 50% of SAH patients never go back to work. He was surprised I was going back at all! Thanks for the advice about building up the hours slowly. This is what has been agreed already and hopefully it will be stuck to by management. Interesting that ... Janet? (I think it was) mentioned ongoing nerve pain. I have been offered a nerve block injection for my headaches but was unsure whether to go for it as the doctor could not provide me with any concrete evidence on the pros/cons. He told me to look it up online which I did but ... am still none the wiser! Oh well, off to munch some more painkillers Thanks again for the wise words, Leonie xx

Hi Everyone, I started back at work at the very end of September. Even though I am on reduced hours I cannot believe a) how tired I am ALL the time and how frequent and intense my headaches have become ... again. I was more nervous returning to work than I even admit to myself but am slowly starting to relax and enjoy it again. I have also started on the GP exercise referral scheme to try and increase my cardio fitness. This has been really hard because the gym is so loud - why is the music at such a deafening, headache inducing level? And because of the dizziness and lack of co-ordination which has led to some hairy moments on the treadmill. To be honest, I don't really do that much and so I have come to terms with the fact that the extra bellies gained since my SAH will have to stay with me for a while yet!:redface: Sorry I haven't been online much since starting back at work as am finding it hard to turn on my computer after work these days - unless I force myself. Makes my eyes burn. I'm rambling. Sorry. I was warned by occ health (who have been great in assisting my return to work) that I would feel more drained etc. but my question is - HOW LONG WILL IT LAST FOR? I feel like I am drowning despite everyone, even my line manager at work staying that I am doing really well. Finding time to do the stuff that I like doing between naps and bouts of headaches isn't easy and its beginning to get to me. I think I am turning into a very grumpy old woman who isn't very nice to be around at 38! Does anyone have a rough estimate how long things will take to calm down a bit? Or it that like asking 'How long is a piece of string?' Have a great afternoon everyone, Leo xx

Hi Adam, Try and get your GP to refer you to your nearest neuro occupational health specialist. Failing that, contact your local branch of Headway and ask for their advice about being referred. I had my SAH on New Years Eve 2007. Until a friend mentioned me to her relative I had no support what-so-ever and was feeling exactly as you do - willing to go back to work but very unsure of my abilities. However, following a neuropsychological assessment at the hospital (8 months post SAH & instigated by friends relative who works in the field) where I was clipped, I was referred to the neuro-occupational health team who have been excellent in both supporting my return to work (contacting my employers and setting up meetings etc. to facilitate my return) and generally sorting out what are my real from my perceived deficits (concentration and not memory). Employers generally seem to think that if you look OK then you can do everything straight away or that you look OK but must be totally incapable of doing your previous job without giving people a chance to try to return to work on a realistic phased return timetable. This is probably a result of the unfortunate huge gap between the medical treatment and the help/support (if available in your area) that is on offer. Basically what I am trying to say is get to see an occupational therapist who specialize in brain injuries as soon as possible. It will help one way or another. Best wishes, Leonie

I'm sorry Perry. You have had horrible news. Funny isn't it? (in a non-humorous way) how "well" we all look and how much is still being affected by our SAH's. To quote my dear old dad, I look well from far but am far from well! - we could all use that saying! Any idea when the coils will be replaced? Leonie

Thanks for all of your positive messages x x

The title had nothing to do with the actual programme - quite ridiculous really.

Hi, have just looked on my Sky TV Guide and tonight at 8pm (sorry for late notice) there is a programme on Sky 3 about a man who had/has an AVM. Its imaginatively called "The Man Who Had Minutes to Live" Leonie x x

Thanks Karen, a 'necessary evil' is a good way of describing it! Hope you manage to get away and have a nice summer holiday Leonie xx