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  1. Today
  2. Hi Claire, Thanks for sharing your experience. I am having an Mri in September and seeing the neurologist a week later. I will try and take your advise and keep the trainers locked up until then. It is strange condition to deal with, having no outward signs of illness and being, almost back to my old self. I hope that the headaches, tired days and the associated disconnection between brain and mouth that seems to occur sometimes, will be gone soon but that might be wishful thinking. At least there are dozens of posts on this site from people like yourself, who are further down the road, to read and gain some understanding of this strange condition. Bri.
  3. Hi Bri welcome to BTG glad you have found us and are finding the site useful. I too too am a jogger, actually had my bleed whilst out running 4 years ago. Like you my bleed was non aneurysmal and I had an evd for 8 days - so a very similar experience. I was 55 at the time of my NASAH in Feb 2015. I started running again about the end of May 2015 by joining a C25k group building up slowly. This was after having an MRI and all clear to run from my neurovascular team. I gradually built up distance again taking it slowly as it was obviously a worry I would have another bleed - although the mri said I wouldn’t! I now run approx 5 miles, three times a week, with a group or friends. Have completed the Great South Run twice and intend to do it again this year. To me running is my saviour. It helps with stress which I suffer from at work and I feel I do it more for my mental than physical health. I can be brain dead after a working day but always feel much better after a run so I can understand how you miss it. Get the all clear from from your team, make sure you drink plenty whilst running and get back out there. Good luck, feel free to ask any more questions. Look forward to hearing how you get on! Clare xx
  4. Yesterday
  5. Hello there, I am very pleased to have found this forum, specifically for those who suffered a non aneurysmal bleed. I am 58 years old and had my bleed back in May (24th). A total of 3 weeks in hospital, an Evd fitted for 8 days, with one episode of vasospasm on day 4 post bleed. CT, MRI and two angiograms couldn't find the cause of the SAH. Upon release, I was told that I should go home and, get back to doing what I did before. Since coming home, I have gained all the weight I lost in hospital and I am capable of doing most jobs around the house. Although I still suffer mild headaches after too much exertion or if I stand up quickly. What I want to do is start running again, I am missing the physical release and de stressing benefits of a decent jog. It is now two months since the bleed and would be interested to hear other people's opinion on when to get back doing exercise.
  6. Hi there warm welcome to the site, glad you found us, I was taken to Edinburgh Western General - life savers.... Take things easy rest and relax when your tired give in and rest, keep well hydrated especially when its warm...
  7. Last week
  8. 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
  9. Welcome to the website. You can take time and read thru some of the threads. They are very helpful. We cannot give you medical advice but I m sure you will get lots of info.
  10. We , well I was so scared when Family told me what happened, and I thought this is it, the end of me. I came on here and people were laughing and joking about the funny things they did when unwell ie early days This site gave me my laughter back, and they have been there so know what we are all talking about ie little worries etc etc . You take care and get that smile back or I'll sing an old pub song to you!! Trust me no one wants that xxxx
  11. Thank you for accepting me into the group and the encouraging words. xx
  12. Hi Sheilau, Welcome to BTG, sorry to hear you had SAH, you were very lucky to have someone call that ambulance. You have come to a great place for support and advice, lots of very friendly people here who will help you along your recovery road. That road can be a bit bumpy at times, although you do sound like you are recovering well, just try and make sure you listen to your body and your brain. When you feel tired make sure you rest, fatigue is on of the main problems after such an event. Drinking plenty of fluids and staying hydrated will help with any headaches that you might have. It is still early days in your recovery and it is normal to worry or have the fear that it will happen again, I think we as survivors have all had the fear. It does get easier as time passes, just take things slowly and don't try to rush through your recovery, it all takes time, your brain and your body have suffered this trauma and they need time to recover, if you push to hard, they will let you know you are going too quickly. It takes time finding your new normal, so be kind to yourself. I wish you well with your recovery journey. Let us know how things are going and pop into the green room, lots of banter and friendly chat goes on in there. Love Michelle xx
  13. Hi Sheila, welcome to BTG , glad you have found us and are finding the site useful. Sounds like it was lucky someone called that ambulance! You will find lots of like minded souls here on the site, all with different stories to tell. But the common thread is fatigue which could well be an ongoing problem. I am 4 years out and still suffer from fatigue when I push too hard, work being the main culprit. Take things slowly and you will find your new normal. It may be a bumpy road but hold on tight and you will get there. Be good to hear more from you. Clare xx
  14. Hi Sheilau I was cooking tea and hubby came home early with some wine, I thought this might cheer me up as had been feeling rough all day. Never had a drop and passed out...I was told I was in Kings College in London and after 4/6 months went to another hospital nearer home. I came home from there as they wanted me put in a home as I'd never be me again and to say goodbye to the Mum/Wife I once was (OT's!!) I called them witches and cried when they came near me dont ask me why as I have no memory of that time. I awoke up after Kings said I needed a shunt put in as I had hydrocephalus and had one fitted. My dogs went potty I gave my Daughter a big hug when she said "welcome back Mum" I am so pleased to be alive and in the land of the living ...my walking is not that good but was told I'd never walk again. Good Luck on your recovery and remember we are Survivors xxxxx Welcome to BTG xxxx Had my coils in since 2009 xx
  15. Hello, I had an SAH whilst shopping 9 weeks ago. Luckily someone called an ambulance for I was all for going home to sleep! At A&E I was told there was an air ambulance on its way to fly me to Edinburgh as there are no facilities for surgery further North in Scotland. I had a coil inserted and got home after 2.5 weeks. After initial left side weakness, and lots of horror stories, I am amazed that apart from tiredness, I seem to be making a full physical recovery. I do worry that the coil will fail and that I won't be so lucky if it happens again. It's good to have found a group that I can relate to.
  16. Thanks for sharing this, it is a very interesting read and very informative.
  17. Just thought I would share this article I found as this is a fantastic explanation of what happens during an sah and why https://www.womenshealthmag.com/health/a19995966/brain-aneurysm-symptoms/
  18. Colleen, thanks for your reply. I occasionally think about what the operation actually entails, pretty amazing things actually heals and gets better. I have learned so many new things about my poor head, like you can be numb and itchy at the same time. Who knew that was possible?!
  19. Hi Yun, No trivial questions when it comes to brain surgery after effects. I also had clipping. The incision ran down my right side hairline. Don't want to be too graphic but scalp was pulled back and skull bone removed to get to where they needed to go. The skull pieces were repaired with "bondo", and these areas ache when the weather changes or I'm tired or stressed. As for the scalp, it was explained to me that as all the disturbed nerves heal, it would feel tingly or itchy or like something was crawling . That took a very good while to go away. Even now, 10+ years later, sometimes I get a sensation of numbness, usually associated with fatigue, stress or too much caffeine. But nothing like the early days. It does get better, slowly but surely. Colleen
  20. Thanks for the great tips. Good to know it does get better eventually. I just thought 9 months is an awful long time. Not in the world of sah and brain surgery, I am slowly learning. Kind of funny, my neurosurgeon actually got a bit mad at me a week after for not realising how big deal this is. I was attempting humor and he was very Dutch. But later I was able to joke with him a bit in follow ups.
  21. Hi Yun, I didn't have clipping, but head and scalp were tender and my hair was starting to go thin .... Brushing the hair, especially in the morning or after washing wasn't good .... I found this detangler brush a huge help and I still use one .... it's called a Tangle Teezer and the following link will give you some ideas as to what it looks like, but you can pick these up now from any supermarket or drug store. https://www.tangleteezer.com/
  22. I had this eventually it eased, I used a shampoo for sensitive scalp, (cant get the one I used to use now) but now use Head & shoulders sensitive scalp its ok..
  23. Hi Casey, Good to hear from you. Sorry for what happened to you, must have been terrifying... When all was said and done and I returned to Mass General for my first follow up with Neuro I was so blindsided. I mentioned to the doctor that I was especially fearful as I had now had 2 strokes...and he said not really (me???) he told me then about the vasospasm and that it was really all part of the same stroke...I had to go home and go on the computer and look it up...took me weeks to be able to do it. If they were expecting vasospams for me no one mentioned it when they sent me home from the SAH. My initial follow up appointment was set for a month...but as I said I was back in the ER way before that.. Such a complex event(s).... Stay well.. Jean
  24. Swishy, I had a nasah in 2012. I live in Arkansas and was sent to Little Rock for treatment. I was placed in NSICU for 12 days. I had a phenomenal team caring for me. I had what they called vasospasm’s on something like the third day if I remember correctly. However, they were expecting this. I recall seeing the white board on the wall with instructions to not allow my bp to fall below 150. I was told this was to keep the vessels in my head from collapsing. I remember my nurse telling me “ you may die, but it won’t be your heart that kills you!”.
  25. Hi Yun, definately Try the salt water , it will Help I think, I did that like Win after my EVD and then later Shunt surgery, helped with the healing which took ages on the scalp. I also used to give myself (and still do) really gentle head massages with oils around the scar site...didn’t want anyone else to touch my head but happy to manage myself. I used an oil I like the smell of, rose oil, but a plain grape seed one will work just as well. You look like something off the muppets after you do it but to be honest I felt like I was like something off the muppets ( that newsreader eagle maybe? ) I was so out of sorts back then. roll on the years to now and I still have really tender points around my surgery scars and get get odd tingling but sensitivity is far less, oil treatment still what I go for if that happens. Daff
  26. Welcome, I am so sorry this happened to you. Alcohol still affects me differently than before the NASAH and I am almost at the 4 year mark. I just learned to go easy on it. It mostly just makes me forget things, repeat myself, etc. I send you best wishes for a recovery. Chris
  27. Welcome. I am sorry that this happened to you. You will find a ton of great advice, information and support here. Best Wishes, Chris
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