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poppy1 last won the day on May 7 2015

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About poppy1

  • Birthday 11/08/1961

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    East Lothian


  • Location
    East Lothian Scotland
  • SAH/Stroke Date

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  1. Evening all, Early hours and that insomnia gremlin just won't fluff off! Lou, thanks for your kind words, we must catch up soon for a blether. Daff, good vibes right back at you. Sarah, feel free - any questions fire them over, so many folks on here have helped me. Win, you brighten my day with your cheery posts, just reading through the chat gives me a feel good warm feeling. My main issue after the 2nd procedure was the clopidogrel which I was on for 3 months, I reacted very badly to it and it took forever for my body to flush it away. The pain was impossible to manage and because I dont do too well on opiates - sends me loopy, the side effects from other painkillers were horrendous. I saw my consultant some 6 weeks ago following my scan February this year and this time I was ready with the questions! He assured me the pain was not related to the anni which was directly behind my optic nerve but was in fact migraine. I struggle still with this diagnosis as the pain was 70% coming from my eye which was swelling up at times. After examination he advised there would be a visual indicator had the anni been pressing on a nerve . Also my neuro functions have deteriorated. The attacks are coming more frequently and are totally debilitating. Hey ho I'm getting really good at the break dancing almost as good as Michael Jackson lol. Now if I could only sing like him...... On aspirin for life now, trying to keep off the drugs cos they don't work anyway, have been referred to a neuropsychologist, that worries me cos that might be construed as me being aff my Heid. Shhhhh don't tell anyone... Take care guys.. Nighty night. Xxxx
  2. Evening all, Daff you inspired me to write down my thoughts tonight. I haven't posted for a while, as I haven't been at all well and didn't want to be a moanin myrtle , cos I had nothing positive to report. Since last August when I had a stent fitted and further coiling, it's been downhill all the way. The pain, medications, side effects, nausea, chronic insomnia, memory/balance loss. my neuro functions have deteriorated - noise & bright lights set off an attack and to my acute humiliation, my whole body starts to shake. Last but not least, I regularly pee my pants ! lol,.. However, it's not all doom and gloom! Last month, realised I had to do something to help myself and engaged a dietician and therapist. It has been money well spent, I am now on a raw high protein diet (with ice cream) and with assistance I can do a bit of excercise. My weight has dropped, my skin is clearer and it seems to have given me the lift I desperately needed. My anni is still there despite 2 coiling procedures and it scares the hell out of me as my consultant has advised further coiling won't be possible. Next scan February !! One other thing, I am menopausal and my wonderful GP put me on HRT so whichever change or both together, something seems to be working. Only thing now is, instead of the night sweats, I'm freakin freezing! Must be the extra hormones lol. Night night all, oh my goodness it's past 9pm Lots of love and kisses for all you special people.. Di (poppy)
  3. Hi Brenda/guys, I can totally empathise with you on this, my sleeping pattern has never settled down, 15 months post SAH. Last week I was awake for 48 hours. I have taken sleeping meds Zoplicone etc, I get a few nights ok then it doesn't work. Even 20mg Tamazepam I was still awake. Was back at Doc last week and we have went back to the drawing board, the dreaded Amitriptylene! I have been on and off it, 1 or 2 a night for pain - and I had a bad reaction when I stopped taking it, I have no life, this past weekend was spent resting as I was absolutely exhausted and it was so gorgeous outside! Gp has now said to up it to 4 even 5. It's so not the route I want to go down, but I am so desperate I have to give it a try. I didn't get to sleep until 5.30 am this morning and slept until 11, then I can't motivate myself at all to move. It's really getting me down. Seeing Doc again tomorrow, she did suggest the sleep clinic, if anyone has been down that road I would appreciate any advice. I have my doubts as it is almost certainly the brain injury that has caused the insomnia, so how can you fix that So sorry I can't give you some positive feedback honey, just know you're so not alone.. Di xx
  4. Hi Ollie, Sorry to hear your news, but you are in extremely good company here. One thing that helped me understand what was actually going on, was reading "letter from my brain" which you will find pinned on this forum. That more than anything else joined the dots for me. It's been 11 months now - from the day I came home, my sleeping pattern was upside down. Even now if I get 5 hours, I feel thankful. There are meds which help but unfortunately my experience with them wasn't great due to side effects and withdrawal. , I found my neuro nurse at the hospital very helpful. I quote from my Gp " Di, I can't answer your questions, as I don't ever see patients at this stage, as most of them don't make it". That's not to say all gp's don't have a knowledge of this condition, just that the neuro staff do. So don't be afraid to pick up the phone and ring them for answers. Wishing you all the best.. Di/poppy
  5. Guys, it was tongue in cheek and makes me smile every time. Because that is just how it is. It's been 11 months now and you know, it's the people around you that make you see the funny side every time. Di.x
  6. My Rememberer's Broke My Forgettor's getting better But my Rememberer's broke To you that might seem funny But to me, it is no joke For when I'm "here" I am wondering If I should really be "there" And when I try to think it through I haven't really got a clue! Oft times I walk into a room Say "what am I here for?" I wrack my brain, but all in vain A big fat zero is my score At times, I put something away Where it is safe, but Gee, The person it's safest from Is, generally me! When shopping, I may see someone, Say "hi", and have a chat. Then, when that person walks away I ask myself, "who's that?". Yes, my Forgettor's getting better, While my Rememberer's is broke And it's driving me totally crazy And sadly, that isn't a joke. This post has been promoted to an article
  7. My Rememberer's Broke My Forgettor's getting better But my Rememberer's broke To you that might seem funny But to me, it is no joke For when I'm "here" I am wondering If I should really be "there" And when I try to think it through I haven't really got a clue! Oft times I walk into a room Say "what am I here for?" I wrack my brain, but all in vain A big fat zero is my score At times, I put something away Where it is safe, but Gee, The person it's safest from Is, generally me! When shopping, I may see someone, Say "hi", and have a chat. Then, when that person walks away I ask myself, "who's that?". Yes, my Forgettor's getting better, While my Rememberer's is broke And it's driving me totally crazy And sadly, that isn't a joke.
  8. Oh my goodness Janet, you and your family have been through a lot. I had SAH 27th December last year, then a follow up 41/2 hour op mid August and I'm struggling with extreme fatigue and pain behind my right eye, my anni was behind the right optic nerve. I've not had much luck with pain relief medication, although the Amitriptylene has helped with the disturbed sleep patterns. I also smoked socially before anni, but haven't had 1 since my surgeon enlightened me! The vapour pipes helped immensely, still do when the stress comes on, more of a comfort thing really. With so much going on it will seem like an impossible goal to stop, but please try, the coughs and infections might go which in turn might help the nerve pain. Please feel free to contact me if you need some encouragement. My thoughts are with you and your family and little freddie.. Di/Poppy x
  9. Hi Remy, Di here.. Following SAH 27th Dec 2013, I had coiling, and was due for 6 month MRI in June, however, I was experiencing severe headaches and the MRI was brought forward, which showed Significant Coil compaction I posted here under this thread at the time looking for some reassurance as I was so so anxious, in terms of going back to hospital for more brain surgery. The hospital did offer to book an appointment with neuro department to discuss risks etc..they call it elective surgery. But I took the view - it had to be done and that was that and also some of the lovely people on here reminded me that the surgeon didn't have the original bleed to contend with. Brave or what not! Totally crapped myself the night before so maybe on hindsight I should have had that chat with the neuro team! but you know, at that time, I just wanted it all to be over Asap. Further coiling and a stent was carried out 13th August, a four and a half hour op and back to HDU and I was discharged the following day at lunchtime. Here in the UK it is standard to give clopidogrel for 3 months as well as aspirin to prevent clotting around the stent. Unfortunately, I didn't take too well on this drug and have experienced every severe side effect going, which has taken it's toll. However, I finish this drug in a few weeks, so happy days, and I continue the aspirin for another year. All in all, it was a very straight forward procedure, as my neuro nurse said "we carry out this procedure every single day". Have faith Remy and all will be well. You will be in good hands and positive thoughts for you. Di/poppy. Xx
  10. Good luck Kelley, I too would want answers. Neuroscience has progressed such a lot over the last 10- 20 years, even if the docs don't have all the answers, it would be good to have them explain the reason why they don't know. Instead you are left in the dark and more importantly a degree of mistrust will be hovering. I agree with Macca, write the questions on a piece of paper. It totally helped me. Poppy xx
  11. Hi folks, Thank you all for your kind words and best wishes.. It's been a week now and I have virtually slept around the clock. Making up for all those sleepless nights no doubt. But well rested. Cabin fever is setting in now though lol. Lots of fluids yes and lots of visits to the bathroom as well! Headaches not so bad but then I've been asleep most of the time. Do you think that's my brain saying "right! We will shut her down for a wee while to stop her getting any ideas" lol. I feel nauseous most days which doc has put down to the blood thinning meds, yuk. I couldn't even face my daily fruit. Hopefully that will improve. But I feel so much better tonight. Poor jade, my 11 year old weimeraner might get a wee walk tomorrow. She knows her mum's not been well bless. Karen - I am sorry to hear that you may have to have more surgery, hey ho, we are survivors, each and every one of us. You are in my thoughts. Louise - I emailed you.... Well it's nearly 11pm and I'm not in the least bit tired, mind you, I slept 10 hours last night, up at 9 this morning and napped for 3 hours this afternoon. I'd have a cheek to say I'm tired lol. But that's been the daily pattern this past week, and I've not pushed the boundaries, yet, lol. Night all, Speak soon. Poppy
  12. Hi folks, Well I made it!. 4 hour op on Wednesday morning, additional coiling and a stent placed. It all went remarkably well. Didn't sleep on the Tuesday. Doc came and explained the plan, also covered the risks involved which in an attempt to bury my head in the sand I previously didn't want to know. I forgot his name and asked him " I'm sorry doctor, short term memory and all that, what was your name?" DR Downer he replied. I thought, yep that sounds about right lol. Such a lovely man, we had a very positive chat then I had a big fat greet when he left lol. No time to dwell though, a constant traffic of such lovely nurses, docs and anesthetist as well. Had a pre-med in the morning and off we went at 8.30. I have to say whatever was in the premed was lovely happy stuff. Had a wee singsong to myself on the way through the corridors! Back on the HD ward around 2ish. In a fair bit of pain that evening and throughout the night. anurysm is behind the right optical nerve, however. I had recovered somewhat mid morning and was discharged early afternoon, which was a surprise but went straight home and slept round the clock anyway. Co ordinations a wee bit off and headaches to contend with which was expected. All in all a good job done and I can't thank the staff at edinburgh western general enough for their attentive care. A very large box of crispy cremes donuts on their way! I wanted to share my experience with anyone reading this who is about to face surgery, I hope it helps and if I can help further just let me know. And thank you all for your messages of support. I can't tell you how much it has helped. I would say night night I'm off to bed, but I've hardly been out the thing since Thursday lol. Di (poppy) Sah January 2014
  13. Hi everyone, Just a wee update. Going into hospital tomorrow, scheduled for surgery Wednesday morning. More coiling and a stent as well. As you can imagine a few, well more than a few to be honest, sleepless nights this last week. Got butterflies tonight but am trying to be so positive for all the family etc. etc. hopefully, I can update you more by the end of the week. Re-reading all your kind words and assurances has helped tonight. Positive vibes and good thoughts to all of you.. Poppy xx
  14. Thank you so much for your words of encouragement. Feel back to normal, whatever that is lol. Got the phone call and going back in for more coiling and a stent as well. Hopefully, sooner rather than later.. Poppy xx
  15. Hi everyone, Had an angiogram yesterday, and wondered if anyone has experienced burning afterwards. The angiogram itself was rather traumatic due to a large bleed at the groin puncture and agonising pain when the doc put pressure on and plugged the puncture wound, I kid you not, I screamed very loudly.. All last night I had an intense burning on the inside of my thigh, and nagging pain in my groin - today it has eased of a bit, however, I was very shaky on my feet this morning, but again feel much better tonight. I have left a message with my neuro nurse to ring me but I would be very grateful for your experiences.. Alas, doc informed me there and then that further coiling is advisable, just waiting on a call to confirm once he has a meet and consults his colleagues to make a collective decision. Don't know how I feel, I think I resigned myself to going back in a few weeks ago when I was told there had been significant coiling compaction. But, my experience yesterday has given me a wee fright.. Hey ho, hopefully get a date soon, doc reckons 4-6 weeks. Hope you are all in a good place right now. Hugs, Poppy
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