JenniH23
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Thank you Tina and Jean for your lovely messages of encouragement and support. I spoke to my doctor today and she is increasing my blood pressure meds. She also spoke about another pill you can take that calms the body down when you are anxious. I also rang my neurosurgeon and spoke to his assistant. She gave me a lot of reassurance and said he was in tomorrow so she will refer my worries to him and give me a call back. Best wishes Jen X -
It’s over 2 years since I last posted. It’s been a long journey to get back to some kind of normal. I still have blind spots in my vision that is affecting my life greatly. Now I’ve had months to read every piece of literature about SAH I’m looking back at the time I came out of hospital and wondering if I could have changed things. I had a feeling of pressure in my head for about 2 weeks. I remember having a conversation with my partner over wether this was the normal headache to expect. I wish now I’d rang the hospital as they maybe could have relieved this pressure. And I may not have had the problems with my vision. It was about 2 weeks out of hospital when I felt the pressure equalise in my head. I feel so sad and low right now. Not being able to drive and see things as well as I used too is making me regress back to how I was just out of hospital. I’m blaming myself for not acting when I should of. But then they never told me in hospital to ring if I had a build up of pressure in my head. All the tests I had done by the ophthalmologist were normal and my neurosurgeon said the visual part of the brain was unchanged at my first 6 month check up. But obviously it runs deeper within the brain. I just keep thinking back to those 2 weeks and wondering…. I didn’t realise you could relieve pressure on the brain via lumbar puncture….. I’m struggling to move forward with my life! Everything is so much harder when you have visual problems.
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It’s over 2 years since I posted. It’s been a long journey to get back to some kind of normal. I still have blind spots in my vision that is affecting my life greatly. Now I’ve had months to read every piece of literature about SAH I’m looking back at the time I came out of hospital and wondering if I could have changed things. I had a massive feeling of pressure in my head for about 2 weeks. I remember having a conversation with my partner over wether this was the normal headache to expect. I wish now I’d rang the hospital as they may be could have relieved this pressure. And I may not have had the problems with my vision. It was about 2 weeks out of hospital when I felt the pressure equalise in my brain. I feel so sad and low right now. Not being able to drive and see things as well as I used too is making me regress back to how I was just out of hospital. I’m blaming myself for not acting when I should of. But then they never told me in hospital to ring if I had a build up of pressure in my head.
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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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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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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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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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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 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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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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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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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 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
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Hi Karen I just keep thinking if id said they would have taken me more seriously and I would have been treated earlier. I didn’t look like someone with a ruptured aneurysm as I was walking around complaining of a headache. I can’t understand why the brain scan was clear. Most stories I’ve read where someone has colllapsed and been operated on straight away seem to have a better recovery. Sorry I just can’t help thinking I made it worse. Thank you for your kind words. Xxx
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Hello, on the 2nd September my partner and I had just been intimate and I went to the bathroom to remove my makeup when I started with an unbelievable pain in my left eye. This soon spread across the top of my head and down the back. I was violently sick and in pain but thought it was just a bad headache. I tried to sleep and in the morning went to the doctor who told me to go to a&e for a ct scan. I was too embarrassed to mention the intimate part to any of the doctors and I now know this may have helped them diagnose my condition. The scan came back clear and the following day 2 doctors tried to do a lumbar puncture but due to slight curvature of my spine failed. They sent me home to come back next day for an anaesthetist to do the procedure. When it came back with blood in the spinal fluid they said it might be contamination from the day before. I was admitted for a MRI scan the following day. All this time I could feel myself going down hill. I sat all the next day for nothing to happen. It was only when my partner complained they did referral to specialist hospital. I was transferred during the night and had mri the next morning. I was told I had a 5 mm aneurysm that had ruptured and went in to surgery for coiling the next day. It had taken 5 days to diagnose my condition. My recovery has been the hardest 11 weeks of my life I have developed blind spots in my eyes and this having a massive affect on everything I do. I have bad eye strain and my brain just seems to seize up with trying to adjust. I don’t know how to move forward. I have a 6 yr old daughter who needs her mummy. I keep beating myself up over not getting over my embarrassment by telling the doctors more information and wonder if my recovery may have been different. I have an ophthalmic appt in January and my optician has told me to let things settle. But I feel this is it now, no driving & loss of my independence. My partner has been amazing but I feel so sad, lost and scared. Xx
