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    Penrith, Cumbria

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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.
  8. 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.
  9. 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.
  10. Thank you. I am trying my hardest to let time heal. But I am living in fear that this is it for the rest of my life. And that scares me as I was the glue that held everyone together and spent all my time running around doing errands for everyone else. I used to come home from work and still not sit down until about 7.30 when my daughter went to bed. Now I can’t even leave the house without feeling vulnerable. I just feel so useless and so sad. But the thing that hurts the most is the change in relationship with my daughter and partner as they are carrying on with their lives having fun and I am struggling to engage in it. Did your perception return to normal? I haven’t come across many people with sight issues on here. I think that’s why I’m struggling wondering why I’ve got loss of vision as well as the short term memory problems. But then everyone’s situation is different. Hope you have a lovely Christmas with your family. Xx
  11. Hi Macca. When I was in hospital last week I had full ophthalmic assessment and they are now referring me direct to a neurosurgeon. My eyes and optic nerves are fine it’s damage within the brain. I talk to my partner and my mum and cry nearly every day which they are getting frustrated with as they say I must remain positive. I’ve just booked my first counselling session on 30th. I have dealt with a lot of tragedy in my life as I lost both my brother and my father. I was mentally strong after living through these traumatic times but this has literally crushed me. I am still grieving for my old life and what might have been. Thank you for your support, every day is a challenge for me especially now at Christmas when my 6 yr old daughter is so excited and counting down the days but mummy is struggling to do things with her. It’s true what you say about taking time, patience does not come easy to me. And I’ve never once relaxed throughout my recovery first because I was in so much pain and now because I’m so distressed over the loss of my vision. I can’t remember what it’s like going to bed with happy thoughts. I just toss and turn all night. I feel like I’m in a constant nightmare. I hope time is a great healer both mentally and physically. Thank you, best wishes to you and your family for Christmas.
  12. I have previously posted about having blind spots and blurry vision post sah. I feel like my life has just come to a stand still and I don’t know where I go from here. I find it difficult to go out due to where the blind spots are as I get disorientated.. I am waiting for neurology referral at rvi Newcastle but I guess they can only tell me what’s happened not provide a cure. I am torturing myself over not going to hospital the night it happened as I didn’t know how serious it was. All I can think about now is how different my recovery may have been if I’d been treated within 24 hrs.. Might I still have good vision? I’ve been reading that early treatment gives a better chance of a good recovery. This is eating me up inside. I am waiting for counselling but I feel I am the only one to blame for the situation I now find myself in. I also find it hard to sleep as my brain seems to tense up and stop me processing logical thoughts and when I think about something I could do before the vision loss it sends shock waves to wake me up. I guess this is probably trauma. But I also worry it is permanent damage. I don’t have my first mri check up until February. I’m a total mess mentally and physically. Everyone keeps saying stay positive it’s early days at just under 4 months. But Im finding it so hard.
  13. Hi everyone, I’ve previously posted about blind spots in my vision and change in perception. I’m really struggling right now! Last week my vision went blurry so on Monday I called the doctor. He advised me to go to a&e in case it indicated a change in the coiled aneurysm. After a night on a stretcher I was admitted and I had an angiogram which thankfully came back ok. I then had full opthalmic assessment and was told eyes are healthy. I’ve also had a bit of spotting of blood at the top of my nose which the consultant says it is unrelated. But it’s going to get investigated. So here I am day 3 in hospital hoping next stop is neurology. My vision has gone really blurry and it’s worrying me greatly. I dont recognise myself anymore. I’ve lost so much weight. My vision wearing my glasses is probably what it was before I used to put them on. This is so scary!! I worry it will get worse. I worry i have strained my eyes trying to adjust to the blind spots. Im lying in my hospital bed thinking how did I get here? Why am I still here? What use can I be to my family? The doctors are hoping to get some counselling for me. I am so low right now. I feel like I’m just existing and eating just to stay alive!
  14. Hi Clare i have been reading about inter cranial pressure. I had unbelievable pressure in my head and ears with tinnitus in the first few weeks out of hospital. I was confined to my bed. I didn’t know if this was unusual or not. I was told I would get headaches for weeks so just put up with the pain. I guess it’s that pressure that caused the loss of vision but I don’t know if there was anything else that could have been done. You had hydrocephalus which is very serious. Did you experience any loss of vision? I wish i hsd had been more educated on this. Xx
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