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Bev75

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  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 😀 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 🤗😘 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 🤗 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

    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 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
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