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Vicky.W

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  1. I spoke with someone today, she was very nice and very understanding and is going to investigate. I have no issues with the neurology team apart from lack of advice and follow up but that seems to be the norm. It is purely the endoscopy staff who failed to recognise and respond to my obvious distress and sent me home when I did not know where I was or how I had got there. I realise I am quite fortunate to still be here. When the investigation has been completed I will take some time to decide what to do, if anything. It took me three months to be able to talk to PALS in a calm factual way and it was them who started the ball rolling a month ago. I would hate anyone else to go through what I did during and after procedure. The memories will fade, in time, but at the moment it's very raw and I live alone. It does help to talk about it with friends, then I'll just change the subject. At least I'm not waking up at 5 am every morning and remembering a nurse shouting at me to open my mouth and trying to to force a tube down my throat while I was having a brain haemorrhage, so that's an improvement. Best wishes to all.
  2. My NASAH happened 4 months during endoscopy when BP shot up although I don't usually have high BP, just before they started I was anxious and they told me my BP was high. They carried on and then the dreadful headache started. I was yelling and moaning my head hurt so much but they ignored it, held me down and forced my mouth open, they thought I was "acting up". Straight after they told me to go with no recovery time. My friend who came to collect me was horrified when she saw the state of me I didn't know where I was or how I got there. They said it was the after effects of the sedation, they were running late and wanted to go home. It was five days before I went to A/E and as I related this to the doctor my BP rocketed again and the excruciating headpain returned. I was in a CT scanner within 20 minutes where two bleeds were detected in frontal lobe. After MRA no aneurysms found. I still have PTSD about it but thought it was improving. I made a formal complaint and the hospital phoned on FRIDAY to discuss it. I've just picked up message. My BP has shot up, my head is throbbing and I can't breathe - that's just the thought of talking about. I'm scared that discussing it with someone will give me another one! I've just taken a beta blocker and 2mg diazepam. Obviously stilll affecting me badly but I feel I had to make a complaint because I was treated so brutally.
  3. Vicky.W

    Did a stupid thing

    Thanks Greg and Win. My GP suggested Amitriptyline til I reminded him what it did to my ectopic heartbeats. I asked about tramadol, I'm not keen to restart them - had them for couple of years with slipped disc. He said try one first. Found out my cholesterol has rocketed to 6.7 (5.9 last year) but not going to add statins to the mix. I wasn't surprised though, eating rubbish and no exercise. I can't shake the depression, anxiety, headache and living alone in a small village doesn't help. Not being able to drive at the moment is restrictive, hate having to rely on people. Well, I've done an Internet shop of healthy food and ordered a new step counter from Amazon. I will take a tramadol and try get my act together. It's 16 weeks now - when I get to six months I might begin to stop thinking I'm going to die at any moment. Love this site - so much info and people feeling just like I do. X
  4. Vicky.W

    Did a stupid thing

    I've had no follow up from hosp since discharge in September. Just told not to take blood thinners and keep BP under 120 at ALL times (impossible and I've got low BP 100/60 often). Sometimes it goes up to 135 ish for a while. I take diazepam occasionally for anxiety and paracetamol or cocodamol for headaches, which are both useless. My GP said I could take trams weeks ago but I didn't want to start them again. I may have to give a try. My GP knows less about NASAH than me and can't speak to a NHS neurologist - they don't communicate very well. No useful advice on recovery - re activity, meds, emotional issues, etc.
  5. Vicky.W

    Did a stupid thing

    Still got the headache, comes and goes. Doctor unconcerned. Wondering whether to risk ONE tramadol, they did wonders for back pain and have a packet left.
  6. Yesterday I changed a lampshade. This involved standing on tiptoes and reaching up with both hands very high for several minutes, while looking up. Afterwards I realised how stupid that was and I have had a bad headache ever since, particularly in my eyes. My BP is quite low 100-110/60 ish. Had NASAH in frontal lobe in September. Do you think I've done more damage or just upset it? Not like the original bleed headpain. Cannot believe my stupidity!
  7. Vicky.W

    Dental work

    Okay thanks.
  8. Has anyone had a root canal done three months after a NASAH. Very anxious all the time anyway without this toothache.
  9. Doesn't the MRI angio count?
  10. Two months ago I had bilateral NASAH of frontal lobe during endoscopy. I notified DVLA. On checking DVLA website it says I need "documented normal cerebral angiogram" before being allowed to drive again. My neurologist said a few weeks at time of discharge and nothing was mentioned about cerebral angiogram. I have no neurological problems, no seizures and did not lose consciousness. Do I have to subject myself to this risky and costly procedure? Does the NHS do this anyway - they are already strapped for cash. Shall I just sell my car?
  11. Vicky.W

    Confused

    Jo Jo, I was discharged after five days. No info, no advice. Still have vile headache, so tired, anxious. No answers.
  12. Vicky.W

    Amyloid angiopathy

    Does no-one know anything about amyloid angiopathy?
  13. Vicky.W

    Amyloid angiopathy

    When I was in hospital the neurologist spent about three minutes each time. I will pay for a private consultation at Plymouth.
  14. Vicky.W

    Amyloid angiopathy

    Thanks for your support, it means a lot. I have a GP appointment in 2 weeks when I shall ask for a another explanation as I can't remember everything. Then ask to talk to a specialist neurologist because here, in UK, you only get ten minutes on nhs but if I pay to see someone privately I will get longer. Don't know if I'm more scared of getting dementia or sudden death. Neither appeals.
  15. Hello, I'm new. Had 2 NASAH a month ago. No neuro signs but just left with headaches, fatigue, depression and major anxiety. I was in hospital 5 days then sent home with no follow-up, no advice, no prognosis. They just said the neurologists would contact my GP when they had studied scans. My GP called me a few days ago and read the letter he had received. They are almost certain the bleeds were caused by a condition called Amyloid Angiopathy. I looked it up and it is a degenerative progressive brain condition for which there is no treatment. That was communicated to me in a four minute phone call. Needless to say I am devastated and terrified. I've Googled it far too much and there is a Facebook Group for it but that's even worse than reading Dr Google. Has anyone else been informed that this could be cause of their NASAH.
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