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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 overdo on your good days. Kind regards Bev x
  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 tummy. The hydrocephalus nurse said I need to find another way of doing things, so i'm not bending forward, which irritates the tubing. I'm still hoping that one-day it will settle. So it's official now, I've been medically retired. I don't think it's quite sunk in yet to be honest. Hope you are doing ok in lockdown Best wishes Bev xx
  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 their app. I use it everyday. My life now I spend in a calm quiet environment. I'm giving my brain plenty of downtime. As Daff said, our lovely friend Win, would always recommend singing as a good distraction πŸ˜€ bless her. Xx
  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!! How long did you find it took before your symptoms started to settle down? I'm now being medically retired from work, as it's 7 months since the first shunt op, it's been a long 2 1/2yrs in my recovery, Neuro surgeon said, I won't now get back to how I use to be pre bleed, I'm having to find my new norm now. So having to deal with my impending retirement from work, having giving my all to get back working 16hrs from home, I just can't cope with it any longer, it's not giving up, it's recognition that change is needed. Daff, you've been a wealth of information and support to me these past few years, thank you sooo much. I live on my own, my daughter who's been a fantastic support has now gone back to uni, it's been a bit scary being back on my own again. The OT has made sure I've got all the adaptations that I need, so just seeing how I get on. My oldest daughter who lives 5 mins away, pops in after work, so I can have a bath/shower. Resilience is our strength, still here, still hoping xxx
  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 as my ventricles had become constricted. I only found this out after the surgery, I'm now back in high pressure, hydrocephalus symptoms are being troublesome again. And I'm really having problems with stabbing pains in my tummy and right side where my rib cage on my side. I'm feeling the tubing, I'm having to use a hot water bottle everyday to help with the discomfort. Some days I feel tubing in my neck go taught and get pleuric pain in my ribs and right shoulder. I've been trying to put up with it, but after 10 weeks, it's just not settling. I'm waiting for my appt to go back in to have the shunt setting lowered, should I say something and request an ultra sound on my tummy to have the distal end checked out, I'm in so much pain, I literally can't do anything. Would really like to hear your thoughts from you guys in the shunt club xx
  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 you. I don't know which shunt they're going to do yet . Lumbar or Ventricular? I've got ongoing neck and shoulder inpingement, with chronic bursitis, it's taking some time to settle. I'll keep you updated when I get a date to go. Many thanks guys for all your replies of support, really means a lot xx
  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 overly distorted and sensitive. My speech had improved, I looked more awake and my blance and walking inproved too, bit of weakness down my left side, but hey that's ok. I sat there and had tears in my eyes, thanked the doctor, I really didn't know what to expect to be honest. I've got to go back on Monday for a check up and CT scan. I don't know how long these improvements will last for, but i'm embrasing every moment. They spoke about shunt surgery, where they feel it can help hydrocephalus. Seems like the hamorrhage I had, has caused abnormal drainage. So having been laid down flat, drinking 3ltrs of water and lots of cups of caffiene. I'm feeling lighter, brighter, my family say they can see it in my eyes, i'm back πŸ€—πŸ˜˜ This morning, still feeling good, my back is sore from the puncture site, plaster can come off tonight. Taking some pain relief medication, and a large cup of coffee to aid of post lumbar headache. I'm a happy lady, today is a GREAT day, hello everyone πŸ€— xxxx
  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 injured brain. I'm now going through the process of having someone help me fill in the forms about how my illness affects my ability to work. I've had to put off the lumbar puncture drain and shunt as i'd developed inflammation, (bursitis in my shoulder and elbow) waited 6 months to see a Rheumatologist. They've booked me in for a couple of injections and diagnosed Fibromyalgia. I had meningitis 2 days after the brain haemorrhage, 8 weeks later i'd developed pain in my hands and feet, then months later it spread to my shoulders, elbows and now knees. Sleep has still been disrupted, they are now referring me for a sleep study, due to ongoing night terrors, PTSD confirmed, possible sleep apnea. I'm exhausted, to be honest. My friend told me about a weighted blanket to try, which is on order as we speak. I do hope this will help, seems to have good reports about them. I've got a follow up appointment with the Neuro Surgeon on the 23rd, I really have been struggling these past few weeks. Xxx
  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 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
  13. Bev75


    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 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
  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 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
  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 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
  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 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
  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, greet each day as it comes. And i'm taking all advice onboard. Thank you xxx
  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 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
  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 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
  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 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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