Gillian99

Hi Margaret, I will also be 3 years in November and feel exactly the same as you. Never feel 100%, head is always a bit off at best and stress, worry or doing too much has a major effect on my rather fragile brain. Tried an exercise DVD on Thursday morning and head's been sore since! It's so frustrating and gets me down as it's so difficult to plan anything as I never know how I'm going to feel from one day to the next. I'm back to work 24 hours over 3 days but it takes its toll and I usually spend the weekend trying to chill so I'm fit for work again the following week. It's always with you, the worry that it could happen again and I worry about the effects the headaches will have long term, but it makes you really appreciate it when you do have a good day! Learning how to manage it is key, but it's not easy and I'm still learning! Take it eady and be kind to yourself. Gillian

Hi, I am 21 months post NASH and still struggling with many of the issues you have too Trace. I can actually feel my brain all the time and it takes so little for it to become irritated. It almost feels like it doesn't quite belong to me, as if it's incompatible with the rest of me! I keep looking for a pattern to feeling rubbish and it seems that stress and worry of any kind (especially work related) seem to have a fairly devastating effect on my poor frazzled brain. I am up to 21 hours working over 3 days, but I am finding this very hard and need to have a snooze when I get home. I think the worse part is when I'm having a period of sleeplessness as it's so hard to function especially when it's a work day. It's so reassuring to know that others are experiencing similar issues and it's a great relief to know you're not alone. We are all very lucky to still be here but it's difficult for people to understand that although you look ok, all is far from being ok a lot of the time. I too am more of a reader but your post made me want to contribute my own wee story, it's good to share! Take care and be kind to yourself.

Hi, everyone. Thanks for sharing your experiences. I'm still waiting for hospital appointment, my GP is chasing it up. However, I have had a good couple of weeks and definitely feeling better. I'm going back to work mid October on a phased return, and feeling pretty positive about it. Still get really tired but head's not been as sore. My GP prescribed beta blockers which really seem to have helped. Thanks again for all your responses, they've really helped.

Thanks Jane and Carolyn for your kind words. Definitely feeling better today, so hopefully entering an improved phase. ! Thanks to everyone for replying, your support and advice is very much appreciated. Gillian xx

Thanks Skippy. Been drinking lots of water and taking it really easy. I am waiting for a neurology appointment, which hopefully won't be too long. I know I need to take things much slower than before but I was the queen of multitasking, so this new me is taking a bit of getting used to!

Hi folks, wee bit more info as requested. My bleed was a sudden explosion (best way I can describe it) at the base of my skull, the pain slowly travelled from there to my forehead within about half an hour. Stupidly I did nothing about it and eventually went to Dr six days later as realised headache wasn't shifting. Sent for CT scan which was negative, so had lumbar puncture which confirmed bleed. Transferred to high dependency for five days then on ward for five days. Also had CT Angio and an Angiogram both negative and was advised it was a non aneurysmal bleed which had stopped itself. Was discharged with sick line for six weeks and advised to expect to be tired and have headaches. That was pretty much it! I have spoken to the neuro nurse a few times and she has been helpful and reassuring. I think I just assumed I would be back to 'normal' in six weeks, never for a minute did I think I would still have so many issues and still be suffering such debilitating headaches this far down the line. Thanks for your replies. Gillian xx

Thanks Clare. Yes I have good support from family and friends. This last bad spell has really hit me quite hard, probably because it's made me realise that it may always be like this and sometimes it just feels like there's no escape from the after effects of this bleed. It's the not knowing that I'm finding hard and I don't really know what to do with myself to make things better. My GP has referred me back to neurology, so just waiting on an appointment. I know I am very lucky to be here and this forum has really helped.

Hi, I had my bleed on 6th November last year. Went back to work in May but I've been signed off again as found it was just too much for me to cope with; noise, concentrating, lights, thinking etc. Have been very up and down (mostly down) since November but have had the odd day where I've felt quite good. My question is really whether or not my head will ever feel back to normal? Currently had a rubbish two weeks and I'm so fed up of feeling unwell! Still suffering from headaches and feelings of pressure ( bit like someone's got my head in a vice grip) amongst other things such as ongoing fatigue, nausea, light headed. Any advice anyone can give would be most appreciated. I've found it so reassuring reading the posts on this sight, it's so good to know that your not alone!