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Bev75

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  1. Hi Mike, Thank you so much for your words of wisdom. I really will have to take all of this into a daily practise for sure 😊 Daffodil, I had the call from the hospital, i'm on their waiting list for a Lumar drain with observation for 3 days on the ward. if I get some relief from my symptoms, they will place a shunt. How long did it take for you to recover from this operation? What was it like afterwards, I could do with your imput as i'm getting nervous about it xx
  2. Hi guys I've been struggling these past few weeks. The pain in my hands and feet have escalated, I now have this in my elbows, arms, shoulders and neck too. Feeling fatigued, have had a headache all day today. I've been drinking lots of water and rested today. I've been back to my GP to get checked over. They've done some blood tests for auto immune markers. I've had a call from the surgery, they've asked me to go back to see the GP regarding the results and they've referred me to a rheumatologist. Also my neuro surgeon has written to me after my follow up appointment and MRI. He's sugesting a lumbar puncture to assess the pressure of the spinal fluid within the brain and spinal column and draining some to see if this makes any difference and says might lead to an operation for spinal fluid diversion to address any abnormal pressures that might persist following my bleed. I just feel after 10 months post bleed, i'm starting to struggle with all this. Finding it hard at the moment. Xxxx
  3. Bev75

    Jayne

    Hi Jayne, Welcome to the site, read your story, you've been through so much, what a strong woman you are. I too had SAH with viral meningitis last May. I'm still taking things day by day and very thankful that I was signposted to this wonderful site. We are all here to support each other, if you want to chat sometime, always here. Hope you are doing well in your recovery. Bev xx
  4. Hi Daffodil, We use the spoons theory in our Pain Management presentation on pacing. Thank you for this link, it will help me immensley, so I won't have to explain in great detail to our patients now, I can signpost them. I use the spoons theory daily and have found it helps with my fatique and pain, I also use the 3 P's. Prioritise, Plan and Pace. When the body and brain gets use to an easy level of activity, without increased fatique and pain, you can increase your activity only by 20%. And when the body gets use to that, you increase again by 20%. If you have a flare up or increased cognitive problems and fatique, decrease the length/time of activity for a few days and steadily build up to your basline again. We use an effort scale 0 -10 Try to aim for 5 How much effort is the activity 6 + This is too much and overdoing can cause increased symptoms. When the activity is starting to be ok at a certain level and the effort scale is coming down to say a 2. You can then start to pace up 20% Starting back at an effort of 5 again. You can use pacing and the spoons theory for everything. It can make a difference to your quality of life and feel more in control. I know it certainly has helped for me Thank you again Daffodil for the link Bev xxx
  5. Wow, Daffodil, thank you so much for this video. This is just me too a tee. I'm having to try to adjust to the flooding and this has clarified exactly how it is. I can show this video to my family, so they can understand how sensory overload affects us. I had to go for another MRI a few weeks back. It was torture for me, even with the head blocks and ear plugs, this sent my brain into shutdown. I did my meditation and relaxation during the MRI, which helped to calm me down, I came out with tears falling down my cheeks. Being sat up by the radiographer, not knowing where I was, feeling very spaced out. Thank goodness my daughter was with me. I had my dark glasses and ear plugs to hand and had to stay in the sitting area for over an hour, sipping water waiting for my brain to calm down, I was wiped out. It took me a week to get over that experience, sensory overload the worst i've had to endure, but i'm finding ways to cope better. This video has made me feel like i'm not on my own. Thank you so much xxx
  6. Hi Charlie, May bank holiday mine happened, where I was was transferred to the Queens Medical Centre in Nottingham. I know what you mean, Monday I had a really good day, today being Wednesday, glazed over, not retaining what is being said to me, it's like my brain had switched to go slow. My work colleague knows me very well as we work together. She knew instantly that I was not right today and to be honest, i've asked her to give me feedback on how she sees how i'm coping. Today she said that I was having dips of concentration and fatique, which were happening quite quickly, then i'd have a boost of energy and dip out again. I had no idea that this was happening, but knew I was out of sorts, so sat quietly at the back of the room. The SAH nurse left a message on my phone today to get in contact. I think i'll be making that call today and see what they say. I'm working from home for the next 2 days, much quiter and hoping for a better day. Charlie when did you have your NASAH? If you don't mind me asking. Xx Bev
  7. Hi Charlie, I had a NASAH, my recovery has slowed down considerably. I did try the presentation, only to find after 10 minutes, my eyes were glazed, fatigue had set in. My colleague was there to support me and continued the presentation. At least I tried it. I had my follow up appt with the neurosurgeon, he says there is nothing that can be done about the sensory overload. That the recovery period may take between 2-3yrs or longer and he's appointed a SAH nurse specialist. I had bloods taken yesterday, have a nerve conduction test tomorrow and awaiting a further MRA. He says that my Central and Peripheral Nervous System have been compromised, i've developed post stroke pain. Work have been brilliant, the pressure has been taken off me. They've said it does not matter how long it takes in my recovery, to just do what I can and no more. Slow and steady. How are you doing with your recovery? Hope all is going well All the best Bev xx
  8. Hi Tina, Bless you, thank you so much, your message really has given me the lift I needed and today has been a better day. Yes that is so very true, to be kind to yourself and i'm putting it into practice as we speak 😊 I live on my own, with my little cat Mac 🐱 and find the quietness helps to calm my senses. But I have to venture out, doing the normal day to day stuff, that is challenging. I've been trying auditory desensitisation, listening to pink noise in the background, just trying anything at the moment. I'm in the mindset now, I just have to let it go, greet each day as it comes. And i'm taking all advice onboard. Thank you xxx
  9. Hi guys, Just an update, 6 months on, i'm still having sensory overload, especially sensitivity with my hearing, photophobic, feeling sick and disorientated. Headaches with a burning sensation in the left side if my head with high pitched buzzing sounds. (Very odd sensations).The pain that developed in my hands and feet have now spread to my elbows too, which i'm trying to manage with Pregabalin which has helped to take the edge off. I've also been using mindfulness and relaxation techniques to help bring my sense of awareness back. Friday was a bad day, woke up not knowing what day it was, feeling very disorientated. So I rested and drank lots of water, felt a little better on Saturday. Today, I had I saw the consultant who looked after me when I had the SAH. My hopes were dashed, when he said there was nothing he could do with the sensory overload and symptoms that i'm experiencing.I'd developed Meningitis and low sodium levels after the cerebro angiogram that he performed and says, it's now compromised the central and peripheral nervous system. Today I broke down in floods of tears after hearing that my recovery will take as long as 2 yrs plus and still might be left with sensory overload. He's booking a further MRA, bloods and something about testing the CSF build up and appointing a SAH nurse for me. He also kindly signposted me to your support group, which I have found to be invaluable, a great support group, you all have been my saving grace. At times I had felt quite alone during my recovery, but you guys have really helped me through it, giving good tips and advice. Tomorrow, i'm hoping will be a better day xx
  10. Thanks for letting me know 😊 xxx
  11. Thank you so much Clare for your Kind supporting words. There seems to be a few of us who were left undiagnosed with no treatment for many hours. Thank goodness your husband was so persistant, which prompted them to get the care and treatment you needed. Sometimes I think when we don't remember much it can be a blessing, but not nice for our family and loved ones to have to see us so ill. Take care and hope you too are recovering well xxx
  12. Hi CharlieD, I totally get where you are coming from, i'm coming up to the 5 and a half months since my SAH. I too get these strange sensations in my head, which leave me feeling tired and not with it. I've been trying to pace my day as best I can. And also have begun the slow phasing back into work. I had occupational health (a neuro doctor) speak with me and he did a report for my employer giving guidance for up to a year. I'm lucky that I work in the health sector in Pain Management, so i've had good support from my colleague. I started working from home, 3 days a week just doing 1 phone call per hour with a patient and have now gradually increased this to 2 calls in the hour. This is all that I can manage at the moment, I take regular rests in between. My D day is tomorrow, I will be joining my colleague in a Pain Management Program with 10 people. This is a huge step for me, I'm just shadowing, just seeing how I manage the day. The prospect of me standing up in front of people and delivering the program scares the living daylights out of me. I'm no where near that stage yet, i've got a very big mountain to climb. But I know just like you, we have to take one step at a time, rest when you can, taking life at a much slower pace. Sending warm regards Good luck with your recovery Xx
  13. Hi Winb143 That is so very sad to hear this about the gentleman's grandaughter, total respect for her father. And a blessing for you that he was your first responder. Keep singing young man? Thank you for your kind words, Xxx
  14. Thank you Daffodil, for your words of wisdom. This truly has helped to give me a better insight as to what to expect during my recovery. I shall be taking on board your suggestions, I like the idea of a cream tea off the beaten track. That's on my to do list in the not too distant future ? for sure. Daffodil, 39 is so very young, bless you xx
  15. Thank you both for your advise. I've got a neuro appointment with the consultant end of December. I had a cerebral angiogram at the time of the SAH, they said i'd had some blood vessels that had obliterated and then resealed themselves. The blood had also got into the CFS fluid causing irritation to the menengies, where I developed menengitis and also low sodium levels in my blood. Apparently this was causing pressure on my brain, hense being in ICU. I was given Nimodopene for 3 weeks. At the time they told me I would have a lot of pain in my head, neck, upper and lower back as the blood in the fluid could take up to 3 months be reabsorbed. But after 9 weeks, I developed peripheral nuropathy. They didn't tell me about this and it's been getting worse. My speech has improved, I seem to stammer and forget my words when I get tired. So i've been resting as and when I can. I don't know how much water I should be drinking now. My fluid intake previously was monitored to just 1.5 litre per day, due to the low sodium levels. Has anyone had ongoing problems with their hearing and eyesight being very oversensitive. I still am not able to tolerate being in a crowded noisey environment, such as going out for a meal or going out for a drink. It's like all my sensory filters have gone and I feel every vibration in my head and ears. I have earplugs and wear dark glasses as and when I need them. But i'm not tolerating being out in busy environments. Does anyone know how long this can last for? I'm finding that my friends are asking me to join them for meals out etc, but i'm having to decline. Because you look ok, people think that you now ok. But as you know, this is not the case when your brain is still healing. I'm 53 I was a very healthy active lady before the heamorrhage. The neuro doctors can't give me a reason why this happened, they told me I was very lucky to of survived this, especially as the paramedics missed all my symptoms, who scaled it down to a non urgent case in their hand over in casualty and was left in cubical for 5 hours before being seen by a doctor. After the CT scan, they told my daughter that I was being transfered to the neuro unit in Nottingham, they told her not to follow the ambulance as she would not be able to keep up with them. My daughter got to the unit, thinking that I would be there and being treated. Only to find the doctors were still waiting for my arrival. My daughter and family were frantically calling the hospital to find out where I was, they didn't know. Apparently the paramedics turned up 2 hours later with me. Where I went to ICU. I was totally out of it and unaware of what was going on, my family made their concerns to the neuro doctors of the previous hospital's lack of care and early treatment. Thank goodness I was now in good hands and had the Gold Star treatment. The neuro unit at Queens Medical Centre in Nottingham were brilliant xx
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