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JenniH23

Update! Does anyone suffer from blind spots?

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I’ve previously posted about developing blind spots in my vision. I’m 4 months post SAH. I’ve had tests at the rvi. Newcastle and they found eyes looked normal. I’m going back for electrode tests on 28th to see if optic nerve etc is functioning. I’ve got flashing lights and blurry vision as well as blind spots. Every day is a challenge for me. 

 

Im not coping with this at all. I spoke to a first response counsellor who is referring me to the acquired brain injury people for occupational and psychological help. 

 

Im ruminating constantly over not calling an ambulance when the bleed happened as it was 11 at night and I didn’t realise how serious it was so tried to sleep it off. I was walking around quite conscious the next day when I went to a&e and it all went wrong from there on. Not treated for a further 5 days!

 

All I can think about is I was so lucky to have survived the bleed and to be conscious it must have been a small one and if I’d got treated straight away then like many survivors on here I’d still have my vision. I look at photos of my life this time last year and I just cry. I’m can’t see a future and how I can be the partner and mum that I once was.

 

Where do you start when every day you struggle to get out of bed and everything you do or watch on tv reminds you that you can’t do that anymore because you can’t see properly to do it? 

 

Im 47 and waited so long to have my little girl now I just feel I’ve let her down.  I was a hands on mum doing everything I had the best life working part time spending the rest of my week looking after everyone else. Now all I do is walk her to school when it’s light enough for me to see. And cuddle on the sofa watching tv. 

 

Im so sad all I want to do is stay in bed as that’s where I can remember how good life used to be. 

 

 

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Hi Jenni,

 

You sound a little sad today, but you are looking at the negative side of events.  Have a look at the positive side and it looks a lot brighter.

1) You survived

 

2) You are still with us

 

3) You gave birth to a beautiful daughter. She is better with you in her life than without and that will always be the case.

 

4) You are the apple of her eye

 

5) You haven't let anyone down

 

6) Four months after a SAH is no time at all - recovery can take quite a time

 

7) What's wrong with walking to school and cuddling on the sofa?  A Nothing.  Your daughter will appreciate those times when she grows up, probably more than she appears to now!  Nothing makes you closer than cuddling your Mum!  Fantastic.

 

8 Don't dwell on the past - concentrate on the future, after all, you can't turn the clock back

 

9) Turn your activities away from purely visual ones for the time being, think about learning another language which you can do audibly, or listening to audio books, or learning a musical instrument.  What it takes is determination and a positive attitude.

 

10)  get your daughter to join in and help you. You can teach each other - activities you can do together.

 

11)  You are the partner and Mum you always were -it's just another problem you've encountered.  One thing you learn about after SAH is patience and that your body needs time to repair itself as best it can and for your brain to re-route. I'm sure over time things will get better. In my own case it was over two years before I started to feel 'up' again after having been 'down' for so long.  But I got there and you will too.

 

12) Start learning to know what you can do, what you can do with assistance and what you can't do without help.  It will alter over time, but doing this will in itself be a challenge, will keep you occupied and will make you feel more positive about yourself.

 

Lastly, talk to people and try not to dwell on 'that night.'  People are more receptive, I find, to helping you if they can see you are trying to help yourself rather than just waiting for things to happen. Involve and talk to your partner too who will appreciate your positive attitude and reassure you.  Get a coffee group going and get talking to friends, you will be amazed at how much they will want to help you but were afraid to ask. So make the first move, that's all it takes.

 

Get this problem by the scruff of the neck and tell yourself it isn't going to beat you, because you have a daughter who wants to see her Mum be the best she can be whatever the problem, because to her, her Mum is Supermum.  And that's the way it should be!  She loves you, so be the best you can be, nobody can ask any more of anyone than to try their best.  

 

Be under no illusions though.  It may take quite a time for improvements to filter through. The doctors will do what they can, but you have to play your part too.  There will be steps forward and maybe a few back with a few tears.  That's normal. Don't be afraid to cry or be frustrated. No-one says life is easy.  Life changes in one way or another for all of us. It's how you deal with it going forward that counts. Just keep batting and you will get through.

 

Good luck. With that little girl behind you and with your partner at your side, what better team could there possibly be!?  Nobody is an island. Nobody gets through life alone. Everyone needs help - it's just that now it's your turn to need it, so ask and don't feel one bit guilty about it.

 

I wish you well Jenni.  We've all been there, We know how you feel and well done for being so candid about the way you feel and for sharing it with us.

 

Now we can help, so keep posting. 

 

Best wishes.

 

Macca

 

 

 

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Thank you for all that great advice

 

My partner is very supportive. He’s being tough on me as he says he loves me too much to let this beat me. This morning as it was raining he jumped in my car and drove down to school with my daughter. The one thing I would do every day as I dropped her off on my way to work. It broke my heart. I’m so glad to be alive but it’s also so hard to accept what has happened.

 

No one will explain why I have vision problems although I’ve read everything online. I don’t think they want to hold anyone responsible for the delay in diagnosis. I’ve been told that even after these further tests they may still not know. 

 

Im trying my best to be positive adapting to this life is so so hard. Not being able to see properly sort of detaches you from reality. That’s what I’m finding it difficult to cope with. I can’t just sit and relax having a chat in front of the tv with a glass of wine like I used too. My perception has been altered so everything and everyone looks strange. 

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Hi jenni,

 

What a great bloke you've got there!  A good man!

 

Brains are complex and need time above all else. You will find that testing will probably continue until they do find and answer, and if they don't then you should keep pushing for one! 

 

One thing you will find without visual stimulation is that your audio stimulation will become sharper because your brain will be working to make sense of what you hear, rather than both what you see and hear.

 

I've no doubt it is hard to adapt, but maybe answers are just round the corner. Patience is what you must learn at the moment. Even after these tests they may not know, you say.

 

But then again, they may know, or be nearer to knowing - and once they do that, they may be able to find a solution for you.  So again, try to look on the positive side. 

 

And next time your partner decides to do the school drop say "Wait, I'll get my coat"  and go with them.  Then you can walk back like you usually do - just take an umbrella with you!  Don't let a bit of rain put you off!  You will still have taken your daughter to school. And your partner will be impressed too!

 

When you feel negative ask your self what the positive side is, turn things around to your advantage. I realise it is difficult for you at the moment but it will be better for you if you can see your way to try and change your mindset a bit. Maybe that won't be overnight, but doing small things successfully will start to help build your confidence. When you have set the ball rolling, momentum will build.

 

Macca

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Jenni, Macca has given great advice and I agree with every single thing he says. 

 

You must please keep in mind that just because you can’t see you have injured yourself you have and you are very early in your healing and so you need to allow the brain time to heal and adjust to what’s is different and find new pathways.

 

I couldn’t watch a TV for ages and then nothing cognitively demanding ...took too much brain energy so used audible and tried drawing and other things. I painted furniture, took me ten times as long as it would have before but hey I still did it.

 

I taught myself how to upholster which was hilarious...I genuinely couldn’t even thread a needle post bleed. That took a year before I could do it...but my solution...my daughters are very good at threading needles! Accept help, look for solutions and do differently...it’s ok. 

 

i am a big one for using an analogy . Say you were walking down the stairs, took a massive tumble and sustained a very nasty break, you would have no choice but to accept the limitsthat this would place and also the cast and crutches would all signalto all that you are still battered and bruised. Well that’s your brain right now honey. It’s on crutches , you can’t pick up where you were and as it’s in the driving seat of your body so it can enforce slow. Please listen to it. 

 

I was and am a mum to young girls too, I know that loss of identity and purpose but equally they just want YOU. Genuinely If you spoke to my daughters now 7 years down the line ( they are 14 and 16 now) I know they’d say I am actually a more enjoyable mum.

 

We do things differently, slower, but they have my attention, my listening and most of all they still have me. They have friends without parents and get loss can happen. Let yourself off the hook. You cannot change or reverse this event, you have to go on and rebuild and regain. And you will honey. 

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Thank you. I often feel my brain is so damaged it will never recover. I struggle with short term memory. Often think about doing something then move on to something else before I start it.  Am I the only one who struggles to sleep.  Think part of it is trauma when I dream about something I’d struggle to do now my brain sends a shockwave and wakes me up. But sometimes my brain just tenses up and I find it impossible to sleep. My thoughts are muddled and all foggy. 

 

Every day I hope things might get better. That all the flashing lights and sparkles will settle down. In time things may improve. I get exhausted doing simple tasks but never nap during the day as I can’t relax because of the vision loss. I keep thinking if I could still see I’d be treating myself so much better right now. Instead I’m just punishing myself over & over again with regret and at the same time trying to cope with the trauma of it all. 

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Hi Jennie,

 

Excellent advice from Macca which hopefully will help keep you focused.

 

It appears you are having a hard time of it all and you mention the fact that you regret calling for an ambulance at the time, which is making you believe things may have been different if you didn't have to wait 5 days before being operated on. 

 

Even if you had rung at the time, I doubt the outcome would have been any different.  When I had my bleed at the age of 46 I did call for an ambulance whilst it was happening, but it was still another 10 days before I got operated on because the paramedic in the ambulance didn't think I needed to go to hospital!  So it is not always clear cut between what you expect should happen and what actually does.

 

After my operation I suffered with zig zag flashing lights in my vision, but not the blind spots or blurry vision you describe.  I was also re-admitted to

hospital a year later with double vision, but that has been the only time that has happened.

 

I hope you get some answers from the next test they are going to do, but like others have said, it really is early days for you so don't just assume that things won't improve, because often things do - wishing you all the best,

 

Sarah

 

 

 

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Hi Sarah.

 

Thank you for your kind message. Goodness 10 days!!! I could feel my head getting worse as the days went by. It’s a miracle we are both still alive!!

 

When I came out of the operation I suffered really bad migraine. Had to take beta blockers to stop them. 

 

I wonder if some damage was done during surgery. When I left hospital I couldn’t really focus on anything as I felt there was too much information coming in to my brain. So I didn’t notice any blind spots.

 

How long did you get the zig zag lights for? Has your double vision resolved itself now? 

 

Wishing you well

Jenni x

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Jenni, all those answers you want to know you must ask your consultant when you next see him. Write a list and take someone with you as a second pair of ears. I know it has been said before but you are very early on in your recovery and some things take loads of time to resolve themselves.

 

Difficult as it is, stop wondering about events until you see someone who can give you answers.

 

I know it is hard but please try not dwell on the "I wonders", try to adapt your life to your limitations, that may only be in the short term, no one knows how long for.

 

As to your blurred vision but not the blind spots, I had blurred vision in one eye, so much so I was just about blind in that eye. There was a reason for it and a good eye surgeon corrected it although I am left with floaters that can be annoying at times. At least I have my sight back.

 

As a conclusion I will tell you, that in my case, I now look on my SAH as a blessing in disguise. It gave me a good life other than all work and no play. Yes, I lost my sense of balance and have to use a frame BUT I have a wonderful life, doing just what I want to do when I want.  Please try and stay positive.

 

PS all those cuddles in front of the TV will mean as much to your daughter as being active with her. (I wish my mother had cuddled me)

 

 

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Jenni, just keep the faith and 4 months is very early on.... you will improve over the next few months and years....you won't be stuck with this.

 

My bleed affected my right eye/muscle ... I had double vision and other, but with the help of glasses, it's got better and better.

 

Try to judge yourself from when you left hospital and not before you had the bleed ... try to remember that your little girl is much better with you, rather than without you ... each hug and cuddle is precious ... walking her to school is a great accomplishment and a precious moment ... you will get better......don't be hard on yourself.

 

It's normal to want to stay in bed and rest up in the early months ... don't feel guilty for needing that rest ... fit it in, when you need to and your little girl won't mind you snuggling up on the sofa and watching the tv.

 

Take care and be kind to yourself ...xx

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Hi again Jenni,

 

The delay in getting attention certainly concerned me at the time and I did make a complaint, via my GP to the ambulance service although I never heard anything further. So yes, it's always a welcome miracle to come out the other side!

 

It certainly is hard having children to care for when this has happened. Mine were 8,13 and 15 at the time of my sah and have all turned out fine despite the difficulties during my recovery. I'm not sure if my then 8 yr old even remembers the day when I forgot to pick him up from school because I'd fallen asleep!  

 

The double vision I had only happened the once and lasted approximately 15 hours, I had a ct scan etc, but in the end the hospital said it was an acephalgic migraine.

 

The zig zag flashing lights came in episodes, the first being a day or 2 after the coiling and lasted about half an hour.  My sah was 11 years ago and whilst I have suffered these ever since, the frequency has reduced dramatically.  I was put on beta blockers after 2 years of having these which definitely helped reduce the frequency. (I'd been referred by my neuro consultant to see a neurologist and ophthalmologist)

 

In the very beginning I could have these episodes several times a week, although my vision was ok in between. Despite having had hundreds of these episodes since my bleed, each year the frequency has gradually lessened until last year when I can only recall having had one episode. The ophthalmologist said it was aura of migraine in my case.

 

Things will get easier Jenni - and the help you eventually receive from the brain injury people will assist greatly and once you feel stronger in yourself, things will become easier to manage.

 

Take care,

Sarah

 

 

 

 

 

 

 

 

 

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Thanks Sarah. I fear mine is permanent damage although I had migraine from the day I had the operation. I also had episodes of neuralgia where my mouth went numb for a few minutes then back to normal.

 

I’d hoped that it was all down to migraine but it’s either as a result of the surgery or down to having so much pressure in my head during my recovery. Think this is called intracranial pressure and causes damage to parts of the brain. Ie those responsible for vision. You get it from not having treatment early hence my anger over delay in diagnosis.

 

I only hope in time things may improve.  I can’t imagine living a full happy life with my little girl the way I am. Life can be so cruel. I lost my only brother in a road traffic accident in 2005 and my dad when my daughter was 6 months old. If I had passed with this my mum said it would have been the end for her too. I fought so hard to come to terms with my loss but this has floored me as it directly affects my health and ability to look after my family. 

 

I am facing the biggest challenge of my life.

 

Best wishes 

Jenni xxxx

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Hi there

 

so glad your being referred for councelling it really can help...

 

some great replies for you (as always) don't be hard on yourself... we all know and understand...

 

take care, enjoy the hugs they are so presious...

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HI Jenni,

 

It saddened me to read your last post, but never give up hope.   I agree that life can be so cruel and I know from personal experience how upsetting these events can be and how it can be detrimental to your mental health - at least it was in my case.

 

Take any help and support available, keep with this site, maybe visit the green room and hopefully it will all be of benefit to you like it has been with so many of us during recovery.

 

Sarah x

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Hello Jenni,

 

So sorry to hear you are sad.  At 4 months, you won't know where you are going to end up... but we can say that 4 months is very early days. I know this is hard as there are no answers when you feel so bad.

 

I had my SAH on 7th February, and I wouldn't have lasted any further if someone hadn't made me go to hospital that day.  With the brain bleed, my eyesight was damaged, with still about 42 degrees at 4 months.  I took to prove that I could manage driving with only one eye - this happened over time.  It's only yesterday that the optician says I can actually drive without prisms (your brain makes up for the squint, it's not quite there yet).  

 

You mention flashes - I do still get this.  What I hope is that some additional time - give you at least a year - before you worry about the longer term.  If blood is left in your brain (this is what happened to me!), it takes a long time for it to eventually disappear.

 

Fiona x

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Hi Fiona

 

Thank you for your reply.

 

Did you lose sight in one eye? I’m not sure what you mean by 42 degrees. I know that’s range of vision but was it just in one eye or both? Has it got any better over time as you don’t need prisms? 

 

I wish i had one eye unaffected but both have blind spots in same place. In my near periforal vision. Unfortunately my right eye isn’t strong enough to compensate. If I’d just had problems with that eye it wouldn’t have been so bad as I see most of my vision out of my left eye.  I’ve had the Humphrey visual field test done twice and it came back normal but I know the driving one is different. I was undiagnosed for 5 days. This must have been a major fact in the damage caused. Hence my anger and frustration. 

 

Im so pleased you can drive again it’s so limiting to not be able too: Well done great achievement?

 

Best wishes for a continued recovery.

 

Jenni X

 

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Hi Jenni,

 

I wouldn't go so far as to say I'd lost my eyes, but both eyes were affected - there were blank spots for each eye.  The right eye was also affected by the muscle (it was going all over the place!) - leaving the right eye pointing at 42 degrees - looking very cross-eyed!

 

 Once I realised I could see, without double-vision, if I shut off an eye, I thought this would solve everything, but the consultant wanted to make sure that I could actually see.  It turned out that there were both blank/blind spots for both eyes, and this took a bit of time to return. 

 

So my eyesight returned very slowly. At 4 months I'd written off the right eye, and always wore a patch or frosted glass. I also tried a black contact lens (very expensive and stupid - worn once).  However prisms *do* make a difference - eventually I tried this out and could use both eyes.  They are pretty horrible when wearing them, but there is another answer - the optician can make glasses.  

 

My consultant told me not to bother (yes, it's expensive) but I went there when I couldn't get an appointment when my eyes had improved a bit - and my prism was wrong for driving!  The prescription specs were AMAZING.  It's like getting your life back.  I've spent a fortune with my optician - three sets of prism glasses since I had got  as far as 10 degrees - but this is well worth the money.  I'm due another optometrist appointment next month, and I think she'll sign me off.  

 

At 4 months you are still very early, so there may be some change - fingers crossed - hope this is some blood hanging around that will eventually disappear, with positive effects.  So terribly annoying that you had to put up with 5 days!

 

Fiona x

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Wow Fiona that is amazing. I thought blind spots were permanent. Whereabouts were they? Could you notice them as mine really effect me? 

 

It looks like mine stem from damage in the brain so don’t know if they will improve but you’ve given me hope. Mine vary at different distances. My sense of perception has been altered too. Its horrid! I think my periforal vision May be improving a little but eyes went very blurry about November and have stayed that way.  

 

The tests I’m having at end of jan are to check if optic nerve etc is functioning as they look ok but need to check if working properly. Fingers crossed I might get some answers even if it’s just to tell me what the problem is and it won’t improve.

 

Thanks for giving me a little bit of hope.

 

Jenni xx

 

 

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The blinds spots weren't defined properly as I couldn't see anything at the time. I really should get them to do the same scans (not done since April) to see what has improved. Only I've had since then is the optometrist and the DVLA testing.  There isn't any blind spots now, but I still get flashing.  It does seem that timing needs to be at least 12-18 months with no intervention.

 

If you get proper test, that will help a fair amount. Hope this all goes well!  xx

 

 

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Hi Fiona 

 

Just wondering how did the consultant identify blind spots when you were unable to focus properly at the time? 

 

Have they been able to help your eye revert back to its normal position?

 

My blind spots are very obvious to me. It’s like wearing a pair of blinkers. I feel like I’m living in a different world to everyone else. Finding it hard to engage in activities around me. Still got all sorts of flashing light & sparkles in my periforal vision. 

 

I’m on strong dose of blood pressure tablets as I’ve so much anxiety over it I’m freaking out all the time. This was supposed to be my time now with my daughter whose nearly 7 and I feel I’ve had it cruelly snatched away. 

 

Xx

 

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The ophthalmic consultant did some tests on my eyes in April last year - ones where they add drops, but nothing I'd ever had before in the optician that also needed drops - sorry I can't remember the names.  The pictures showed clearly that there were some blank spots on both eyes - but also in a way that suggested that it might not be permanent.  The only way to check this is to see this again. 

 

By the end of June, I was able to pass driving, and that was key.  So I don't know whether there is still any permanent blank spots given that they got past my driving. If I was unable to drive, they would need to keep checking this. The consultant was actually a bit cross with me for demanding my DVLA test as he thought I could still be blind despite my test (he'd been unable to schedule an appointment each month, so I forced it).

 

For me, the double vision was worse.  I'm less sure about what causes any blurring.  I think that the left eye is still less 'clear' (colours etc) than the right eye, but not a problem.  That's good that you will have some further tests, they might get to the bottom of that for you.  Just annoying for you as everything will appear like a long wait.

 

For your daughter - well, what's good is that you are still here for her. You feel terrible just now, but you *are* here and she has got you.  

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Thanks Fiona. It looks like yours was a problem within the eye. All my tests have come back ok so looks like mine is a problem within the brain. 

 

Can only hope it may improve over time. 

 

Take care xxx

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