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weedrea

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Everything posted by weedrea

  1. I was a similar age to you when I had my bleed (I was 39). My advice would be: - Drink lots and lots of water - Have a lie down or nap, even for just 1/2 hr, every evening - does wonders to just give your brain a little rest for a while. I had a whole year of this and still do it when stress levels are high - Take it easy with work. I had 3 months off and then 3 months building back up to full time. I'd recommend either Fridays off to give you a long weekend or Wednesdays. Wednesdays I found particularly helpful so that I was only working 2 days at a time - Build up your own confidence regarding exercise. Whilst I can't prove it, I'm sure strenuous in the days leading up to my bleed had some effect. But that's my own thoughts. I built up slowly, maybe only managing 5 mins walking at first (I was afraid to go out of sight of the house). I have found swimming to be an excellent, low impact exercise. I've recently gone on my bike for the first time, managing ~18 miles. Wonderful to have that freedom again (with a helmet of course!!). I wish you all the best in your recovery. Andrea
  2. Very wise to cross the T's etc. I had a period of continual headaches and in the end found out it was caused by sucralose. I'd started taking some supplements to try and help with my arthritis and ended up giving me a constant headache! Fingers crossed that you find some answers.
  3. Thanks all for your kind words. I used to have to fly to Glasgow or Inverness 3 or 4 times a month with work before my bleed. Now I'm not quite so relaxed about traveling but still have to do it at least one a month. So as well as my scan, I get to distract myself with work meetings... Lucky me! I'll also hopefully get to finish my book on Edwyn Collins' recovery. It's been a tough, but inspiring read. I watched a programme last week on The Proclaimers (if you like them I'd thoroughly recommend it on iPlayer). Edwyn had been the producer on one of their albums. It was just so lovely to see him on the screen remembering, talking and laughing.
  4. 4 years today I had my bleed. Where does the time go? Been feeling pensive and a little anxious about it. I'm off to Glasgow on Monday for my 4 year check up scan. The last one I had was 2 years ago so having another scan suddenly brings the memories all back. Also, when I had my 1 year scan, I went with my mum. At that stage she had already had terminal cancer for 18 months. Those few days in Glasgow were probably the last quality time I spent with her as she was just overwhelmed by cancer during her last 6 months. So many mixed emotions about it all. Thanks guys for all the support. Andrea
  5. Welcome to the group. I live in the Western Isles and I too got the air ambulance to the central belt....though I got taken to Glasgow, so I presume you're from the east coast of Scotland. What would we do without the air ambulance? Live savers indeed. I'm just coming up on 4 years since my bleed and coiling. It definitely takes a while to get back on an even keel. As for stressing about the coil - that is normal. I had check-up scans after 6 months, 12 months, 24 months and (after none last year) I'm off in the next week for my 4-year scan. They'll keep monitoring it until they're sure everything is stable. Depending on where you are, they will likely do your scans down in Edinburgh. I had my first scan in Inverness (no MRI in Stornoway so this is closest) but I'll be honest, it was a pain to organise as it was different health boards so now I just go down to Glasgow for my check-ups. I had 3 months off work, and a further 3 months working up to full time. I am fortunate to work from home and still now 4 years later I find it hard when I have to travel for work and spend time in the office. Take it easy and sleep, sleep sleep! I think it was best part of a year before I could cope without a half-hour evening snooze. I still do it when work is stressful. Glad you've found this group. It's very encouraging speaking with others who understand what you're going through. Andrea
  6. Welcome! A Doonhamer are you? My hubby is from Dumfries and we used to live there a while back. Beautiful part of the country to live in. Andrea x
  7. For me it is like a brain fog when I can't think on my feet, take extra time to answer questions when someone's talking to me. Almost like the words are hidden. The other sign for me is grumpiness! When I loose my cool because I can't think straight, I get sent to my bed like a kid!! Half-hour eyes shut is usually enough to reset.
  8. I'm 3 1/2 years past my SAH. I went back to work 3 months after it - first month back 3 days a week, second month 4 days then full time. By the time I went back full time I had lots of annual leave allowance so I ended up taking most Friday's off for another few months. Overall I've not had any real negative impact from my SAH. I'm back working full time but I have the benefit of managing my time to fit with my energy levels. I work at home and I've never been a 9-5 worker. I have the benefit of being in control of my own work so it's no issue if I work at 9pm or 10pm if that's when I'm feeling best - as long as the work gets done on time (but no-one ever arranges for 9am meetings for me!). I have been very fortunate in my recovery but going back to work full time was still a struggle. I spent the first 8 or 9 months having a 30min nap every evening when work was finished for the day. I could still do with that sometimes! When I didn't have my nap I was the grumpiest person in the world! I still have lots of 'times out' during the day - walking the dog (well not now since my old boy left me *still sad*), making a cup of tea...whatever, to break up the day and get away from the computer screen. In my previous life I adored spreadsheets (sad, I know!!) but now an hour and it makes me feel ill and a little crazy! So I'd just suggest you be aware of your own stress levels and tiredness and take breaks as you need them. Worst thing is to try and struggle on. As a starter I'd say if you have annual leave to use up then take Wed's off or Friday's or something to break up your week. It definitely helps if that's an option for you, even in the short term. Happy to chat more or offer more advice if I can... Andrea
  9. Mine has been like that since the start. I had scans at 6 months, 12 months, 24 months and now they've said not to come back until 48 months. Sometimes they settle or change shape so it means an extra coil could be put in. My has changed slightly but not enough and clearly they're not worried given they didn't want to see me for my 3rd year scan. My understanding is that most changes happen fairly early after coiling so it is probably just the coils compacting a little and settling in their place. A scan every year sounds like a good level of monitoring as if there's any additional changes then they should see it before anything untoward might happen.
  10. I had my bleed 3 years ago and for the last year I've been on a Keto diet. I've had no negative issues from it. There's lots of incorrect information out there about it being bad/unhealthy/dangerous but I haven't seen anything to convince me. There's definitely a lag between "current nutritional advice" and the latest nutritional research. I've just finished reading "The Big Fat Surprise" and "The Obesity Code" and I spend lots of time listening to talks/reading blogs on all things nutrition. Convinced this is a healthy way of eating, but clearly everyone is different! There's evidence that higher fat diets actually protect against heart disease (and that low fat diets are more dangerous for heart health). It's sugar that causes heart disease, not fat. And Keto had been a diet that's been around long before low-fat was a thing. It was (and still is) used to treat kids with epilepsy that can't be managed with meds. And glucose isn't something I need to eat to survive...the liver makes more than enough every day. I'd actually say my "brain health" feels better on keto that before (maybe less inflammation), moods more stable, much more energy and a lot less anxiety/low feelings. I'd recommend watching "The Magic Pill" on youtube (and Netflix). Really interesting look at nutrition in the widest sense. (and I'll get off my soap box now)
  11. Congratulations! First year down, here's to many more!
  12. I have two aneurysm, one which bled and was partially coiled and a further one that is being monitored. I had scans at 6 months, 12 months and 24 months. Last year the neuro nurse phoned me and said everything was stable and so they'd ask me back for another scan next year (she said they'd do it every year "because you're young"....aww thanks!). I never got a formal letter from them confirming last year's scan and when I phoned this year they said it was actually on my file that my next scan would be next year and nothing this year. How regularly do you get scans? Thinking of speaking to my GP about this to see if I can push for one this year. Thanks Andrea
  13. I'm a night-owl so had just put the kettle on for my last cuppa of the night when it happened. Problem was my local little hospital wasn't that interested in me - I didn't even see a doctor until 6am and that was only so he could send me home with some paracetamol! Still, glad someone from the dayshift thought it was worth reviewing my file! The doctor wasn't keen at the time to get the radiographer in to do a CT scan as he didn't think it necessary. But I've since learnt that due to shortages of radiographers in the UK that all our local CT scan outputs get sent to Scottish Borders Hospital to be assessed so it is a rather convoluted process!
  14. 3 years ago today at 1am I had my SAH. Sharing experiences and everyday news on here really does make me feel part of a wonderful community! I may never meet any of you but thank you none the less!
  15. It just confirms we're all our own unique mix of biology!
  16. My recovery sounds a lot like yours. I'm coming up in my 3 year anniversary. It took me well over a year to stop needing a snooze after work. In fact my husband still sends me to bed for a nap when I get grumpy... Makes me feel like a toddler! Also headaches for me are a definite sign of doing too much or being stressed. Drinking enough, sleeping and getting out for a short walk are what I usually do when they strike. I have to go away with work a lot and the travel/early starts are a sure fire way of causing headaches for me. I'm fortunate that I work at home and so I have the luxury of going and sitting outside for 5 and getting away from things that way. What about maybe getting up and making cups of tea, or finding an excuse to go for a walk in the office to speak to someone. Lots of breaks, give your brain time to relax!
  17. Here's another one I'd not heard of before: https://www.thefreelibrary.com/Japanese+stroke+clues%3A+are+there+risks+to+low+cholesterol%3F-a07551979 Cholesterol good Shimamoto's group suggests a mechanism to explain how low blood cholesterol increases the risk of cerebral hemorrhage. Because cholesterol plays a vital role in maintaining cell membranes, they say, a lack of cholesterol could lead to weak artery walls prone to rupture, especially when under high pressure. Researchers reported the first MRFIT findings in 1982. In a new analysis of MRFIT data reported in the April 6 NEW ENGLAND JOURNAL OF MEDICINE, scientists found a sixfold greater threat of death from cerebral hemorrhage in middleaged American men with total serum cholesterol levels lower than 160 mg/dl and elevated blood pressure above 90 mm mercury diastolic. The inverse relationship between cholesterol and hemorrhage disappeared for people with normal blood pressure and for those with cholesterol levels above 160 mg/dl. The study was led by Hiroyasu Iso of The Center for Adult Disease in Osaka, Japan, working at the University of Minnesota in Minneapolis with David R. Jacobs Jr. and colleagues. Iso was also a coauthor of the Ikawa Town study.
  18. It'd help if I'd booked the actual report I copied that from! Trying to trace my surfing route.... http://stroke.ahajournals.org/content/strokeaha/46/7/1813.full.pdf https://hal.archives-ouvertes.fr/hal-00552714/document This is the one with the quote... https://helda.helsinki.fi/bitstream/handle/10138/28671/Long-Term+Excess+Mortality+after+Aneurysmal+Subarachnoid+Hemorrhage.pdf;jsessionid=B3E4B15C2C83D01AF8D9905953A9F3A2?sequence=1 Report is called "Long-Term Excess Mortality after Aneurysmal Subarachnoid Hemorrhage"
  19. You got me reading medical research documents again! lol One concluding quote from one that seemed interesting: 'Therefore, aneurysmal SAH should be viewed more as one aspect of a chronic general vascular disease, and more attention should be given to treatment of risk factors and long-term follow-up of these patients.' So I'd presume having more collagen can't be bad.
  20. That's an interesting discussion you had. I don't eat any meat other than fish but when I had my SAH was when I was closer to veggie than pescatarian. I've always had my own thoughts that I hadn't been eating enough collagen at the time. I've also got arthritic wrists so I've started upping my protein and taking joint supplements (I'm trying some that are for bodybuilders...the website advertising them is the scariest thing I've ever seen lol!!). Hoping it helps protect my head too! Every now and then I also get a burst vein on my finger or thumb without a trauma. Apparently it's just a random thing some people get but always makes me think my "vein health" isn't that good.
  21. This made me laugh...when I was in hospital the poor woman in the bed opposite me (who was immobile and couldn't really speak after a stroke) had a baked potato and cheese for lunch and dinner every day for the 10 days I was there! The nurses were always worrying that they weren't really communicating with her to understand what she really wanted. But finally her daughter put their mind at easy by saying she had baked potatoes every day before she was ill! And as for Nimodipine - uggg that was awful. I too was in during the summer and it was SOOOO warm that I was asking for ice packs at night. I suffer from v. cold hands and a constantly freezy nose (Raynauds) and the Nimodipine made all my extremities hot....and my nose itches constantly for 3 weeks. Nearly drove me mad!!! I later found out sometimes they give people with Raynauds Nimodipine as a treatment.....ahhh that'll be a no! Happy to stick with the cold nose!
  22. Lynn congrats on your recovery and on finding us! I'm 2.5 years since my bleed and completely remember the "angry over the smallest thing" phase. It went on quite a while. I've always had a shockingly short temper and just thought it was something that had got more pronounced after my bleed (my poor husband). In the end I realised it was a sign I needed a nap....a bit like a grumpy toddler. So off to bed for 30 mins and then everything came back into balance again. Took about 9 months before I could last a whole day without my grumpiness showing up. Good luck on your continued recovery. Andrea
  23. Welcome! My bleed was from an aneurysm but thankfully was a small bleed. I had 10 days in hospital (surgery on day 2) and was sent on my way with very little information. This site has been so helpful, especially understanding what the first few months would be like from other people's experience. As I say my bleed was small but I still took 3 months before I went back to work and then a further 3 months to get up to full time. During that time I was having daily naps. Even now when I have stressful days at work (like this week!) I go back to having evening naps. Definitely helps to reset yourself. Your theory on why your bleed happened is a bit like mine. I had been exercising WAY too hard in the days before my bleed and definitely feel I pushed too hard and that may have caused it. It's a difficult one because I really want to understand why it happened and "it's just one of those things that can happen" didn't really cut it. After time I found the need for a firm reason abates a little bit (I've no family history, no high blood pressure, don't smoke, don't do drugs!) but it did annoy me for a while. It's the feeling that there's nothing really that could have been done to know about it or indeed stop it takes a while to sink in. As others have said, take it easy on yourself during your recovery. Think of it like a broken leg....it takes a while for everything to heal and for you to gain your strength again. I found my dog was very helpful in my recovery (at the time he was a 14 year old golden retriever...he's just passed his 16th birthday!!). I'd take him 2 min walks, then next week 5 mins etc. Really helped improve my confidence of going out and being by myself (even though it was within spitting distance of home!) . Andrea
  24. Many thanks for all the kind messages. Been a strange day compared to last year - it's been full of "at this time I was leaving you to get on the plane to the hospital...." "This was when I phoned you to say...." etc. Feels like a lifetime ago and a lot has happened since. I know I've been hugely fortunate in my recovery and for that I'm very grateful. And grateful for BTG too. Regardless of where we are in our new journey, this site is a wonderful safe haven for us and the support and kind words from people we'll probably never meet in person is just priceless. Reading your stories of recovery, perseverance and hope have been a real comfort and strength to me (and I'll admit, some have been the bringer of a few tears too!). I seem to have taken it on as my new task to make sure anyone I ever hear about having a SAH or brain injury know about this site! Not sure if they've ever been on the site but I've contacted three complete strangers in the last couple of months who mentioned in passing on Twitter that they'd had an SAH. I wish everyone in our position was aware of this site and the support it offers. Love Andrea x
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