Hi Everyone, I suffered a stroke several years ago at the age of 30 from a bleed from an undiagnosed brainstem cavernoma (knotted vein) whilst training in the gym. 4 years later, one failed surgery to remove the cavernoma and one first born son, among many other ups and downs since my stroke. A can do attitude of exercise and attempting to learn a new language, to restore brain plasticity and neuro regeneration, as recommended leading experts. Having done all that and more, but failing to address the emotional impact through into a pit of depression and anxiety, never wanting to talk about it but couldn’t talk about anything else also. a sense of grief for the old Me, not recognising the man in the mirror.
with side effects making it unavoidable forget and fully move on, i find myself now not so rushed and stressed by the small things. I take the time to truly enjoy the good times and recognise blessings in my life no matter how small. I try to take the time and effort to better understand the misgivings of people whereas before i would be dismissive.
what I would like to know is, looking back, what support people felt they were missing or would have liked to have had? also, as difficult as it is, any positives people can take away from their experiences.
Hi @Jamie, welcome to the forum and thanks for that thoughtful post. My stroke was nowhere near as serious as yours and I’m at a time in my life where I can expect quite a lot of changes - I think we all mourn our younger selves as we get older - so maybe my positives are easier to find than yours were. But for what it’s worth, I’ve met people that I wouldn’t have met otherwise, here and elsewhere, I think (hope) that I’ve built a greater sense of empathy and I know that I better understand what disability really means for those who live with it. I was woefully ignorant of that last one before. My relationships feel stronger and I value them more, and I am a more resilient person as well. It’s not all been sunshine and roses, but there has definitely been an upside.
Hi @Jamie and welcome to the community. It’s great that you have such a positive outlook on things and are enjoying Your good times.
Whilst I would never have wanted to be here there have been some positives. As @harimanjaro says I have met some inspirational people I never would have otherwise. I too, have a better understanding of disability and am a little less judgemental. My life has slowed down which means I enjoy more time with family. I miss some things but don’t dwell on them and just make the best of what I am left with.
Support wise I think a bit more explaining of stroke and the affects it can have from the stroke team when I was in hospital would have been useful. If someone had explained fatigue to me for example it would have saved a couple of trips to A&E.
In the main my family and friends were very supportive and they got me through some low times.
Hi Jamie. I had been diagnosed with 3 strokes in July this year. The only sign was me experiencing a disturbance in my right eye. Therefore I consider myself very lucky. However my mental health has been horrific: I’m on a trial of Mirtazapine for my low moods; I’m also still waiting for some talking therapy which is from the nhs, but no signs of where I am in the queue yet. The stroke association have got very useful items on cognitive and memory issues. I feel you should have a read if you haven’t already done so. I had little to no support after discharge; just the obligatory 12 weeks of a nurse once a week. Most of it has been down to me to chase. I think people see me physically ok and think nothing wrong with her. As I read once, not all disabilities are visible.
I’m thinking of switching from Citalopram to Mirtazapine. In fact, I’ve just booked a GP appointment to discuss. There’s a few benefits from Mirtazapine that Citalopram doesn’t offer as an SSRI as opposed to a NaSSA.
Welcome to the community, I’m sorry to hear about your stroke and everything you’ve been through.
It’s great to hear how you’ve found some positives from your situation and I hope you’ll find this community helpful. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
I was previously on Paroxetine but this was primarily to test whether it would help with my menopausal flushes. (Answer: it didn’t.) So that was stopped. I consciously do not find any benefit from Mirtazapine although it’s probably early days yet.
I had a similar experience, either my symptoms were typical side effect of a stroke or completely unrelated, but at first was very difficult not to associate everything with the stroke. fatigue and temperature regulation as well as vertigo were my flavours of choice
I think one of the difficulties is unless you need physical assistance, theres not a lot they can do as the bleed as already happened. Personally i felt very betrayed by my own body, questioning if there was anything i could have done to prevent it, all the while waiting for it to happen again. I understand, you look fine on the outside, you don’t want to keep going on about but find it hard to focus on anything else. if im being honest during my recovery from my stroke and surgery i stumbled on Call the Midwife, was a great show for giving me some perspective. also, i started windowsill gardening.
Hi @Karin ive actually asked my GP to wean me off mirtazapine because of the side effects of increased hunger and desire to eat.ive put on a lot of weight since starting to eat a year ago, I was PEG fed for 5 years.i’m still on the SSRI sertraline which suits me.
I would have liked what many others describe that they had “a stroke team”After an undiagnosed aneurysm (weakened blood vessel wall,I too suffered an haemorrhagic stroke.nobody as far as i remember explained what i could expect after stroke.Nobody told me that I’d lost the ability to speak due to tracheostomy.it was when I had a videofluroscopy to tell me that there was nothing wrong with my vocal chords and a SALT said to me “I know you know how to say it. Since then I’ve been talking and can now hold a conversation.i also never expected to be treated like I was stupid or lacked cognition.its exhausting!by law every adult is to be treated as if they are cognisant until proved otherwise.