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Everything posted by JenniH23

  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
  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
  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
  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 thi
  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 its
  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 ma
  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 b
  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
  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 havi
  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
  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
  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 inv
  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.
  15. Thank you all for your kind and supportive replies. I know I still have a long journey ahead. I am going through all sorts of emotions right now. I keep torturing myself over not going to hospital when I had the bad headache at bedtime. But I didn’t know how serious it was. Then after visiting the doctor first thing I was sent to sit in a&e for 4 hrs before they did a scan. By which time the bleed did not show. This was the start of 4/5 days trying to get a diagnosis. I just keep thinking if i had been treated earlier then I may not have had these problems with my vision. Which
  16. It is 3 months on Monday since I had my sah followed by coiling 6 days later due to various problems with diagnosis. I now have blind spots in both eyes and I am trying to adjust. However this is making going out very difficult. I get overwhelmed in supermarkets by too much information coming in to my brain. I get dizzy and feel almost detached from everything around me. I feel so so sad right now. Christmas was always my favourite time of year I loved looking at all the decorations in the shops. i also fear that I won’t be able to do anything with my daughter. She is 6 and I am sc
  17. Thank you I’m just waiting for it to come through. Probably won’t be until next year now. Xx
  18. I was looking at my partner sat on the floor tonight and if I looked at his hands his head was blurry. Maybe it’s blurred vision rather than lack of perception.
  19. Hi Skippy. i contacted rvi Newcastle neurological ophthalmic dept today. They told me to get doctor referral direct to them. So just waiting for appt now. Thank you x
  20. Since my SAH I have developed blind spots in my eyes. I also seem to have lost some perception of vision. When I look at myself in a mirror I can only focus on either my head or my body even though I can see them. Does anyone else experience this?
  21. Hi Daffodil Thank you for your message it’s given me hope that I’ll see my little grow up. I'm so nervous about my first MRI in Feb, 6 months after the bleed. I worry I might need more coils or something else might be there. I go in a spiral of worry about my vision to my headaches to my coils to getting another aneurysm. I haven’t had normal sleep as my worries resonate in my dreams. I’m trying not to worry but it’s so hard. Keep well & continue with your recovery. Xxx
  22. Hi Michelle. i live in Penrith so had my treatment over in Newcastle at the RVI. Grew up in the Lakes as my parents used to own a caravan & chalet site. Do you live far away? Xx
  23. Super Mario - Goodness it sounds like you’ve had a really tough time. Thank you for all your advice. Every day brings its challenges but I still have hope things will improve. I have good and bad days but I’m taking it slow. I’ve been looking forward to seeing frozen II since I saw the first one about 4 yrs ago. At the time I thought when the next one comes out my little girl will be 6 or 7. Didn’t ever imagine it would be like this tho. But she will love it and that makes it all worthwhile. Best wishes to you xxx
  24. Hi Macca Thank you for such a lovely reply. I've been to the optician and eyes are not affected. It’s behind the eye so I have ophthalmic appt in January to assess extent of the problem. I’m trying to adapt every day. Shopping is so hard as there is so much to take in and so much I can’t see. My left handside is disoriented so navigating a trolley around a supermarket is also another challenge. I’m able to do school drop off as fortunately it’s at the bottom of our street. But I can’t see everyone the same and the school playground is daunting.
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