Hello all, it’s been a very long time since i have been on here. I had my stroke November 2020 during the second and longest lockdown. Just after that Christmas I suffered a heart attack. during late October i had a full blown seizure, something I had never had prior to my stroke. I had my drivers licence suspended, referred to a neurologist who gave seizure medication and informed I would not likely anymore as some stroke victims get one then that’s it, (I politely told him I am a survivor not a victim) 2 month’s later suffered another seizure, medication increased. After 1 year of being seizure free I started the long road of trying to get my licence back. DVLA sent me for a field vision test, all of this made my anxiety extremely high. I finally got my licence back, then my cholesterol consultant decided I needed an added drug to reduce my cholesterol down further. i was given an injection called Inclisaran this is a slow release drug, 8 weeks after having it I had another seizure, so licence suspended again. I was given my 2nd dose of Inclisaran and again i suffered a further 4 seizures. my neurologist, informed me due to my stroke and where it damaged m brain that I would have epilepsy for the rest of my life, at which point I actually thought what’s the point in living. I had additional drugs added to control my epilepsy , the huge downfall is the fatigue is unbearable at times. I have finally got my drivers licence back, but only use my little car for very local journeys only. I now have a new neurologist dedicated for the management of epilepsy, they did multiple tests, which I had never had before, they showed me the damage to my brain and said most likely my stroke was caused a whole in my heart. this forum has been a great healing place for me, also helping where i can in the involvement projects. My GP has sent me for counselling but this has made my anxiety even worse. Sorry for the long message I needed to talk, my husband is a rock for me, but my family just brush things away
I believe that getting it written down is a brilliant exercise in ‘tidying up’ the brain.
Worries, insurmountable obstacles, fears, begin to be measurable and start falling into a position in which they are more visible and it becomes possible to find answers and directions.
Sometimes just asking a question can turn on a light that makes finding an answer real and achievable.
Sharing one’s experience in this community adds value for us all.
@chris67 I hope that after all these trials and tribulations you begin to find a way towards a better place.
@chris67 that’s some Journey you’ve been on. A very frustrating one at times I should imagine. This forum is a great place for getting your thoughts and feelings down and hopefully as helped you a little bit. It sounds like you’re new neurologist is making sure that every avenue has been covered. Hopefully you will now remain seizure free and your hard fought for driving license stays firmly in your grasp.
best wishes
Ann
Aye, we certainly shouldn’t be seen as victims, that denotes not surviving, in my book. Did you have the PFO (hole in the heart) stitched up? I couldn’t face driving again after stroke, sold my little Nissan Micra. In many ways walking gives me an excuse to exercise and keep rehabilitating my gait and vision, however, I am tempted to get a moped to reach the further shops when I need to do my weekly bigger shop, at the moment, I get a lift down. I can walk down there at a push but would struggle to carry bags of groceries back. Such a shame we don’t have a green grocer anymore and smaller shops have too high a price for things like butter and cheese. I’m sorry to hear you have seizures, I’ve always been a little fearful of having one.
thank you so much it means a lot
@rups. my hole in the heat had an umbrella type thing inserted into it. I was on a day case unit, they go in through the groin. The bruise went from there all the way to my knee. Banned from walking for 2 weeks then allowed small 100 mtr walks with someone
Thank you for sharing @chris67 this is both a difficult and inspirational read as I’m lucky to have had little impact post stroke on my own life but still getting through the after effects. You seem such a strong person and again have such a strong husband to support you well done to him too. This has inspired me after a few tough weeks to see that I’m really doing ok and again am very lucky. Wishing you and husband the very best of health and hope your recovery is a strong one.