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Bev75

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Everything posted by Bev75

  1. Hi Allianz, I had SAH nearly 3 yrs ago with left sided weakness. I was diagnosed with post heamorrhagic hydrocephalus a year ago and since then have had 2 different types of shunts fitted. I'm using a walking stick as it helps me to feel the floor when I walk. I'm finding fatigue is still a big battle on a daily basis and was told it can take your brain a long time to recover. My Parietal lobe was damaged, I try to keep a positive outlook, taking it one day at a time. 1 year is still very early in your recovery, keep being kind to yourself and try not to ove
  2. Hi Daff, It's been a while and I just want to say a big thank you 😊 For all your support and advice you've given me these past few years, which have been invaluable to me. I feel like my journey after my bleed has been a very similar one to yours and it makes me feel that I'm not alone. I had another shunt adjustment in Jan, where they've lowered the settings to 1.5 so I'm now having to readjust again to everything. Blimey doesn't it take time, it seems for me it takes about 3 months for the pressure to settle. But i'm still getting horrible stitch like pain in my
  3. Hi Gam, I can totally understand where you are coming from. I was just like you, Daff, sent me the link for sensory flooding which really helped me to understand what had been happening to me. I too practice mindfulness everyday. Mark Williams is very good, I have his audio books, I like the 5 minute breathing space he practises on there. which i've found have helped to desensitise the chaos of distorted sounds and vibrations. I still have the high pitched hissing and buzzing, but I find I'm coping much better using relaxation techniques, I use Headspace and have downloaded
  4. Bless you Daff. Everything that you've described is exactly the same for me too. Totally know what you mean when you say it takes your breath away, Literally! It sure does. Funnily enough, I've just started taking vitamin D, B12, magnesium and a fish oil supplement as the pain in my hands and feet have come back with a vengeance, Fibro's flared up again, so maybe could be a contributing factor too. I'm still feeling quite sick, sensitivity to light, sounds and smell, still overloaded, having to rely on anti sickness meds again. I feel I'm back to square one yet again!!
  5. Hi guys, Wanting some advice please. My last update, I had a lumbar shunt fitted in March this year, where I suffered some awful low pressure symptoms due to the shunt over draining. The whole nation went into lockdown, where I had to endure these horrible symptoms until it was safe for me to go back into hospital. CT scan showed I'd developed slit ventricles due to over drainage. The neuro surgeon decided to tie off the troubling lumbar shunt and leave it in as a back up. He added a further Ventricular Peritoneal shunt, having to go in free hand using ultrasound
  6. Daff, Thank you so much for your information, it really has helped. Yes I would appreciate any guidence, my symtoms are very similar to what you experienced. I'm back to wearing dark glasses and ear plugs again, stumbling about. But at least I had a glimps of what improvements I can gain. It has worried me about having a shunt, but i've got no choice now, this is the only option I have. Reading through your past journal, has given me hope, it's good to know we're not in our own, looks like i'll be joining the shunt club. If that's ok, I would like to PM
  7. Thank you, I'm hoping Dafodil and Win could kindly give me any guidence they can please xx
  8. Hi everyone Sadly by Sunday, all my symptoms had returned, back wearing dark glasses, ear plugs, headaches and stumbling about yet again. I went back for my follow up appointment today. They're booking me in for a scan next Monday and making preparations for shunt surgery in a few weeks time. They are still undecided which shunt to go with, LP or VP. Really hope this will be the turning point now in my recovery xx How long does it take to recover from this type of surgery, and what is it like living with a shunt? Xx
  9. Thank you Veronica. Yesterday I went in for a lumbar puncture. They checked my walking gate, balance and neuro obs etc before and after the procedure. They drained 75 mililitres of CSF fluid. The doctor said the pressure was raised when he did the pressure test. But oh my word, i'm not joking, on each held breath that they asked me to do, I could actually feel the pressure reducing inside my head. The throb was disapating at long last. For the for the first time in 16 months, I could take off my dark glasses and ear plugs, see and hear without it being over
  10. Hi guys, Just thought i'd give an update in my recovery. After 16 months since my NASAH, i've tried phasing back into work, but have found it's like climbing a huge mountain. I'm still nowhere near being able to do my job role. Due to sensory flooding, fatigue and cognitive deficits. Still having to use my ear plugs and dark glasses, even speaking to much leaves me feeling quite sick and disorientated with a headache afterwards. I'm only managing 16 hours now, work have been very supportive. At least I gave it my best shot and the realisation is you just can't rush an i
  11. 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
  12. 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 appoint
  13. 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
  14. 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
  15. 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 radiogr
  16. 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
  17. 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
  18. 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
  19. 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 no
  20. Thanks for letting me know 😊 xxx
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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 th
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