In January 2017 I was on my way to work as normal but by the time I arrived I'd lost 20 minutes from my life and had no idea how to use my computer not even how to log on. Everything new I'd learnt in the previous 3 months had completely gone from my memory. A subsequent brain scan revealed I'd had a very small stroke. I'm very much a well it could have been worse kind of girl and decided just to get on with my life. Just over a week later I slipped on some ice and slammed the back of my head on the pavement, two completely unrelated events it seemed at the time. Time went on and I struggled with learning new things, struggled to access information in my brain which everyone kept putting down to stress. In early 2019 I blacked out in the street and completely lost my speech. The neurologist I saw relating to this realised that the stroke and subsequent head injury had damaged my working memory and left me with difficulty processing audial and visual information. I have now had my neurological assessment and it seems l am having seizures whenever I need to do something that requires several brain functions at a time. If anyone out there has any ideas how you teach a brain that's always functioned logically new ways of learning that don't scramble it I would be very grateful. Someone did suggest I need to be in upper management as I can see the problem, what I need to solution to be, I just need somebody else to come up with the plan for me, seizure problem solved. ?
Has your neuroligist give you any tips or a plan of treatment?
RIck
Hi Rick
We have had a discussion about taking epilepsy medication but I'm really reluctant, it's not for a specific reason, just a really strong gut feeling it would not be the right thing to do at this time. What has amazed me is the improvement in how things have been in the last 4 months since I've had to work from home. I really wasn't aware how much the impact of to much audio/visual information was having.
8 years after my stroke I’m constantly amazed by the amount I’m still learning and improving. Good luck on your journey and we’re always here to react, sympathise, encourage, and chivvy (depending on the news!)
Having lost my speech from my stroke last November and only being 64 with a great job, I have found it extremely frustrating not being able to express myself, read, write and use my computer/phone etc. I have started making progress with technology, reading and communiating with gestures in the last few months, but I miss telling a good joke and chatting with others. The SALT has been quite poor in my location (south of England) and I am still waiting for a referral after no support since May; I'm looking at Apps and a private therapist as I just can't wait any longer. I get so angry, frustrated and really upset that I cry a lot which is hard for me as a grown man. I have been told that I have reached my potential and am unlikley to improve but I have not had the support to see if I can actually improve yet! Even more frustrating and I can't wait to prove them wrong as I did with my walking.
Hi Eddie
If there's one thing in life I've learnt it's that a good cry now and then actually helps. There's been many a time over the past 3 years when actually allowing myself to cry has been a strength in its own way simply by allowing what I'm feeling out. I don't think I'll ever reach my potential, to me it's not some point somebody tells you you've reached in life, it's a constant moving path that has blind alleys and roadworks at times, that mean you need to do a detour out of your way, but often a different route can bring some amazing benefits. You may not feel you have the support but it's right there with you every time you log in and chat. Take care, be safe ?
BeeMac
Dear Eddie1856
I wonder how is your situation now? May I ask please, what happened with your walking recovery? my husband was told the same thing, that he would not recover, three months after his stroke. Now he is moving his leg, two years later.
Hi. It has been a struggle getting support since my stroke and after 10 months of blackouts and associated falls that have resulted in a broken arm and a severe head injury, I was eventually diagnosed with seizures and am now on epilepsy medication - I've had no falls since then ??
However, it was distressing not to have been advised by any medical personnel in over 18 months that stroke victims are at tusk if seizures so 9 months if falls and seizures could have been avoided if I'd known!
my point is that medical staff often treat things in isolation and dint see the whole picture so do make sure your do yours are completely aware of your whole situation and act accordingly ?
Thank you - that means a lot to me and I hope your situation has improved ?
Dear Eddie
gosh me too....the crying is not the old me. But after four years of tears they dried up. Not managed a funeral, but other than that my emotions are much calmer.
private Therapy is a huge help. Ensure the therapist is well versed with stroke patients, it's different from most other therapy.
it seems to be a requirement that professionals do not raise your hopes, when a stroke got me they were the opposite, encouraging all the way.
being positive will help your recovery. Think lots about what you can do. Don't focus on what you can't do at the moment. Smile. Smile, smile. Your brain will react favourably if you smile.
be determined about your recovery. Help and support is good, but only you can make the recovery.
Support for stroke suvivors has been terrible. The pandemic made things even worse. But there are signs of the pandemic easing so help will tickle back. Long covid has very similar problems to us SS. Maybe we can get a boost from the long covid research.
Do not give up. Recovery can come after years, but it's faster in the first two years or so.
best wishes
Colin
Hi Ann , stroke 2 years ago, aged 61 . Absolutely knocked my confidence, almost get tunnel vision , on looking for problems & then endlessly worrying. ANXIETY.
Telephone discussions , learnt HARD WAY , like you ! Most do not understand stroke & slow down, speak slowly, ( I find now need time to almost process, think of reply. At home my wife understands me , that I am best to leave endless notes ?. ) Worst was on line chat with Vodafone, for half hour ! Still did not resolve problem.
Now will ONLY e.mail, find I get better response & will be passed to best person. I state at start , stroke, brain damage, keep it clear & simple , I then have time to process reply, that is , if they have actually read my questions & not just sent me a STANDARD reply .
Successful day , actually drilled a hole for shower pipe, just like old days ! Except instead of 1/2 hour , took 3 hours, also looking down, not good for me. SHATTERED, bed for rest of the day. BUT something about feeling I have achieved something, in my little world , feels good . All the best David.
Hi
sorry to hear that and hope things improve
its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio.
I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing.
im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️
Hi Colin
sorry to hear that and hope things improve
its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio.
I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing.
im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️
That's great news!
the doctors just don't seem to be up to date with their research relying on traditional data to make decisions about people's lives.
im still employed but a brain injury specialist and 2 Occ Health doctors have told my employer the adjustments for work would be too complex, highly unlikely to be successful and not to pursue any further medical assessments. So angry about this!
its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio.
I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing.
im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️
my sister is advocating for me to get proper SALT support and to make sure my employer is not influenced by the negative feedback from supposed specialists
hope things continue to improve for your husband ???
Hello Anne, did you have a cerebellar stroke by any chance? I was misdaignosed with BPPV for three months before I had the proper big one.
Yes, I have heard that stress and anger can instigate a stroke. Partly, why I take Citalopram to keep my anxiety levels down, as there was no cause identified for my stroke, and although I've had a second MRI, it still remains cryptogenic. So, I have spent time reasoning what was going on in my life and what I was doing around the time of the TIAs and then major stroke. And from that investigation, I can be shrewd about how to manage my life going forward.
It's when you mentioned the vertigo that I thought, hmm, possibly cerebellar. It's useful to find out because some physio is different for cerebellar stroke as opposed to stroke in the cerebrum. It's also useful when asking questions on here because cerebellar stroke syndrome can have quite specific symptoms that are shared among those of us who have had it.
Hi Anne
I'm not sure where you're based but here is the contact info for a Neuro Physio I found:
Gerry Harlow MCSP HCPC
Chartered Neurological Physiotherapist / Expert Witness
Office: 01202 740016
Mobile: 079404 12344
e: gerry@neurotherapy.co.uk
e: info@neurotherapy.co.uk
web: www.neurotherapy.co.uk
Steps to Well-being is a talking therapy your GP should refer you to if you're struggling with depression and/or finding it hard to cope.
I was given epilepsy medication in June And haven't fallen since.
There is a therapy called 'EFT' Emotional Freedom Techniques which involves thinking about a feeling and tapping parts of the body to release emotions. It's really good but it's extremely hard to get a therapist and they're about £60 ph. Not available in the NHS.
I hope your sleep improves - gazing at a lava lamp, a fireplace (or virtual fireplace), watching clouds, watching the sea are all very therapeutic.
stay safe Anne
Hi XZ, I feel for you, if you want to exchange messages , please feel free.
All the best