Vision loss and stroke

Hi everyone - I had a stroke in August this year (2022), so about three months ago. The major damage has been to my field of vision, I have left homonyous hemanopia. It has yet to be formally given a level of severity as the opthamologist has a long waiting list, but the stroke specialist has described it as ‘profound’ and warned me that he thinks it unlikely it will recover sufficiently for me to be able to drive again. Quite apart from the headaches and everything taking twice as long to read/do, the no driving is a massive game-changer as we live out in the wilds with virtually no bus service. I have had to give up work (hopefully temporarily). So, very keen to hear from fellow stroke sufferers who have had similar problems and how they have tackled them. I understand it is a long hard battle to convince DVLA that you can drive safely, so very interested to hear from anyone who has had that to deal with. Best wishes to you all. John

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@jjbassett hi John welcome to our lovey forum but sorry you had to join us after having a stroke.

I’m sure someone will message you their experiences so you can get some ideas.

Personally I have stopped working as I worked in school and it was to much for my head to cope with. I’m 19 months post stroke I can drive but choose not to ( hubby chauffeurs me) for the moment.

I wish you lots of luck and best wishes Loraine

Hi John @jjbassett welcome to our little group, though of course I’m sorry about you having a stroke.

My vision wasn’t affected so unfortunately I have no personal experience or advice to share, however I wanted to welcome you. I’m sure there’ll be someone on the forum who will have experience of a similar situation and will hopefully respond to your query.

Best wishes

@jjbassett welcome to the forum although sorry to hear you’ve had a stroke. I had some vision issues with my stroke but not as severe as yours. I had flashing vertical lines in front of my eyes & as a result I wasn’t able to drive for at least 3 months & had to be cleared by DVLA first. For me I had to have an eye assessment at a DVLA approved optician which included a field vision test & i then had to see GP who completed a medical form for DVLA. I’m also under opthalmology. The DVLA process is slow at best & i imagine you will have to be signed off by opthalmology as fit to drive. I too live in rural location & we have no public transport so am dependent on hubby to go anywhere.
It must be difficult for you but right now you need to concentrate on your recovery. Right now you might not be able to drive but that might change if you can recover sufficiently. Try researching online for eye exercises you can do whilst youre waiting for opthalmology.
Wishing you all the best.
Ann x

sorry that your vision has been affected. I can legally drive but also choose not to for the time being. We do live in a rural area but we do have an infrequent bus service and I have relied on others, in particular my husband and daughter, to drive me. It’s not ideal but asking for help is a skill I am getting better at (I hope) and the bus is fun

Post stroke I have had a good number of visual ‘disturbances’ which the Specialist Doctor described as hemanopia. This typically presents as blurred vision with what I would describe as a kaleidescope effect taking over about 50% of my visual field. An episode can last from 10-30 minutes.

Over time I have learned of some circumstances that seem to bring this on:

  • Bright sunlight. I now wear clip on polarising filters over my glasses and this helps cut down the occurence of hemanopia

  • Bright flashing lights. Example of this is on the TV- I simply have to look away

During an episode it can be debilitating and if at home I just sit down, close my eyes and until my vision returns to normal. If I am out it is more challanging and requires extra caution.

I have surrended my driving licence partly to do with this but also because I can still have minor blackouts that can last for a few seconds.

Hello @jjbassett. It is very difficult coping with stroke effects just on their own without then having to work around not being able to drive and the impact that has. My vision is affected by the stroke I had 16 months ago. I have double vision ( diplopia) which is a no-no for driving but the visual field of my unaffected eye was not reduced so I am allowed to drive using monoccular vision, patching my affected eye.
Be aware that your dealings with the DVLA will be frustrating, drawn out and lacking in any human understanding or empathy.
Initially I didn’t think I would ever drive again but along with getting used to the new situation which took time, and being initially encouraged by the hospital to look into it, I took an assessment provided by the NHS at the local neurorehab hospital through their motability department.
I was passed, sent the report to the DVLA as instructed, on the strength of that bought a new car and have been tentatively driving since July. The DVLA are still interested and I am still waiting to hear from them that they have accepted the report I sent them back in July. Sending this sparked an investigation and a threat to revoke my license if I didn’t respond within 5 days of receiving the letter, since resulting in a letter to my consultant requesting more information. So that could take weeks. I am still allowed to drive in the meantime though so what does that say? The last thing I want is to drive if it is not considered safe, and battle with my confidence in part due to this attitude of the DVLA.
I would encourage you to explore what avenues are available to you, take a large draught of patience, and I wish you all the best. Julia

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Hi John I do hope you can get back to driving, living out in sticks with no transport is daunting. I lost some peripheral vision from both eyes on left and it took me a while to discover my sight was not likely to improve, a bitter pill to swallow. Coming out of hospital with the prognosis of a good recovery and having no physical problems thought I’d get back to normal. First step make an appointment with ophthalmologist. He said there’s nothing I can do to help you out and in my experience it’s unusual but not impossible for your vision to improve , I was 72 at time of stroking and working full time as a gardener. Did a little research on Stroke Association Site and discovered from a seminar that had just taken place 2019 that the sort of stroke I suffered, a haemorrhage on the right of brain effecting vision was not likely to improve or respond to brain plasticity exercises. Went to my Doctor. for confirmation. The good news he said was your vision won’t get any worse, yippee but the bad news is it’s not likely to improve. Eyes are healthy its the part of the brain that controlled peripheral vision that was damaged. So no driving for me. But on a more positive note several members of my Stroke Support group have regained their licences .
I’m a stroke survivor am grateful to be still here and enough vision to get by. Good luck on your journey. I also live out in the sticks with a very limited bus service. Paul

Paul - many thanks for your very helpful reply. I was nodding in agreement with all your sentiments ! I am resigned to the hemanopia not improving as it seems to be one of the after effects of a stroke that is untreatable. It is all in the hands of the gods. Do you know if any of your support group who have regained their licences had a similar condition ? That did give me a glimmer of hope. Regards. John

Julia - thank you very much for taking the time to reply. All very helpful and I laughed at your description of DVLA (its either laugh or cry). You would hope that the people there who deal with folks who lose their licences would be trained to respond empathetically. Not in my experience so far. I will keep positive and thanks again for your wise words. Regards. John

Sunnyday - thanks very much for responding. All very helpful. Regards John

Thanks very much Loraine

Thanks @Mahoney. Already had some helpful replies. Regards John

Ann - thanks very much for the wise words. Slow is quite a polite way of describing DVLA ! I will certainly take your advice re concentrating on recovery. Regards John

Thanks Fiona - I might get the bonus of a free bus pass if my vision test results merit it, so fingers crossed for that. Regards John

@jjbassett yes slow is a very polite way of describing DVLA. They had me in tears a few times during my dealings with them. I hope your experience is better but sadly I suspect it won’t be.

I am fortunate in that here in Scotland I get a free bus pass anyway on the grounds of age (over 60). I don’t fancy the rigmarole of having to apply for one otherwise. If you do find yourself entitled to one I hope that the process of applying is straightforward - at least it can’t be as bad as dealing with the DVLA2

Hello John @jjbassett - so sorry to hear about your sight and stroke but like the rest go the gang, welcome to the group. I’m sure you will receive lots of helpful advice on this site.

Take care,

Bert

Hi John sorry to hear you have joined us had my stroke while driving to work start of january ended up in hospital did all the tests blah blah the eye test showed half of both eyes could not see those little flashing lights told not to drive retested 3 months latter slightly worse the young lass looked at me and said i am sorry to tell you your not fit to drive i looke at her and said i had already gathered that sent my license back and they filled in and sent me the certificate of sight impairment i have sparkling lights in my right eye permanent and it feels cold all the time vision has not changed ,on a plus side my lovely dawny says i cant go out on my own as i did one day and missed the zebra crossing by about 20ft she was not amused hope your eyes fair better than mine we are all different take care