I suffered a Brain Haemorrhage several year ago, had a shunt fitted and had to give up work, then several years later had another haemorrhage and spent 3 days in hospital after coming off my bike!
Now things are ok but struggle a bit, tired ness, cant concentrate on things very much and much more!
Came across this site but not sure where to go! anyone help?
Thanks
Caroline
I suffered brain haemorrhage too at the age of 36,it's been a year and still on med. I feel little pains in my head too sometimes but I keep pushing. Don't be worried everything will be fine,my story was a near death experience and I didn't even have surgery but I believe I am fine. I still work over 40 hours a week and I believe I still have a lot to offer this world. Thanks for sharing because I thought I am the only one who had this.
You are in the right place. Had lots helpful tips and good to read how other people are managing. Try Headway website for information. There is help out there 🤓
Hi Caroline. My haemorrhage was 12 years ago and, though I was referred back to the neuro team 12months later for reassessment and endocrine tests, no one then, or since, has been able the address the constant overheating and balance issues.
Unfortunately, many of the after-effects are par for the brain injury course, and what can't be fixed has to be managed. I still get the one-step-forwards/three back issue when I overstep my limits, but it's challenging when our 'old selves' were so much more dynamic.
I've lost the endless patience I once had for really complex tasks and can get quite ratty with the frustration. If only we could stop berating ourselves for things we can no longer achieve and pat ourselves on the back for those we can 🤔😏.
Coming here over the years has become part of my daily routine. There's something inclusive and reassuring being among people who 'get' us. Hope to see you around m'dear.... Cat x
Hi Caroline, welcome to our club, you will find lots of support and friendship on here from likeminded people, in the same boat as yourself. I had my brain haemorrhage in 2017, I have had numerous surgeries with stents and coils in an aneurysm, but it has always proven to be unpredictable my surgeon says. I returned to work for a couple of years until it grew so big it was pressing on my brain stem, this was causing more memory issues, balance was poor, headaches were bad, they gave me five years to live, and would try to put more coils in. When I went to theatre I had a blood clot in front of aneurysm blocking it off and it remains that way to this day, on my last scan it is completely sealed. I am grateful for every day, I haven’t bothered asking for more information, as I have lived with this since 2012 and this is the best it’s been lol, so I will leave it at that for now. This site has been a godsend to me over the years, whether it’s just pointing you in the right direction for something or just a virtual hug when you need one, lots of lovely people, take care love Alice xx
Thank you - good to hear from you! The first haemorrhage I had was in 2008 it was coiled and I had a stent fitted, then I had another haemorrhage in 2022 three days in hospital. Ok now as well as I think! as you say grateful for everyday! sometimes I wish I was better and as I was and feel down but then I pick myself up and get on with it! Thank you for replying good to know others out there that understand! Caroline x
Is yours due to an aneurysm Caroline, and where about was your bleed , mine is on the basilar tip, which is underneath at the back , that’s why it can’t be removed and too close to brain stem, they said it would be catastrophic if it ruptured, well it did and it wasn’t, and it was a large bleed, I was in icu for two weeks, and another two weeks on the ward, but walked out, bit wobbly, but walked, forever grateful to Salford royal, the brain doesn’t work like it used to, I used to be a senior in a residential home, caring for elderly I was worried about forgetting something and putting them at risk, I lose track in conversations, and brain substitutes words, I’m the only one with penguins in my back garden, we just laugh now I don’t let it get me down, I survived that’s what’s important.
Yes original bleed was due to aneurysm was weeks in hospital altogether, icu cant remember. I worked for the education authority, was manager of the behaviour support service. That all came to an end in 2008, since then I've done a lot of cycling but now have been advised not to cycle on roads anymore, so just the trails for me now when weather improves! as you say we are here!
I was walking my dog I had been to work on a Sunday afternoon to prepare a care plan, for a new admission, thought kill two birds with one stone and take the dog, luck I did because where I went down was behind parked cars and couldn’t be seen, it was only my big buffoon of a dog jumping up and down that a lady noticed him in distress and came to investigate. I hope the cycle trails are well used by people so if yours should go again there would be people around. I also have an alert bracelet on informing anyone of my condition, I was in and out of concousness and able to tell my rescuer last time, next time I may not be so lucky. Take care on that bike of yours, your a brave girl, I had terrible balance before my bleed, it’s even worse now xx
I came off my bike but can’t remember someone found me on the ground and I managed to tell them where I lived not sure how! 3 days in hospital I can’t do what I used to and am now only cycling on trails near us not on the road! Though not recently as has been too cold! I struggle with remembering something’s but could be worse! Cx
Surely not another positive post?
Time...? Going back to the consultant.
Letting Things Go and Fixations
I am going to try to be a teacher!
