Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.

Leaderboard


Popular Content

Showing most liked content on 15/07/17 in all areas

  1. 2 points
    Hi boom and welcome to BTg, it's good that you may hopefully get some answers and some shared experiences that might help you make sense of how you've felt these past years since your bleed. i had large bleed back in 2012 and looking back to a year before that I can almost pinpoint when I think i may have had a small bleed , nothing was conclusive in scans at that time but I feel that it was probably the case but personal speculation on my part as i cant ever go back and find out for certain. Karen who set up the sight often lets people know that in the time she has run the site it's a rare occurrence of a rebleed but it's always important to get regular checks post a bleed until discharge. You asked the following and I'll share my thoughts: 1. Forgetful long and short memory issues. Yes, I saw a neuropsychologist after my sah and then attended a course to help me learn new ways to improve my memory and it has improved drastically in the last five years but if I'm tired or overwrought I still easily forget. They explained it's not your memory is bad but your ability to process the memory you are making doesn't work as well so you have to create some 'hooks' to what you want to remember, make mental pictures and associations, repeatable things that are said to you, write things down where you can see them. 2 . Confidence and self esteem has left the building. This was a big deal for me as I used to be so independent and hated the dpendance I found myself in and I struggled but you just have to keep making the circle of what you do wider each time and try new things and work out what is comfortable for you now. Easy does it and be kind as you go to yourself. It takes time to build back up. 3.. No bearing in or on where my life is going. This is probably associated with the second point. Sit down and think about your strengths, you still will have many and find a way you can play to them. There will be something , ponder it and follow that path. 4. Very anxious and uncomfortable in social situations. Again, the above wont help but I found sometimes if you can actually manage to go places on your own and just sit and be there on your own after a while it's not as overwhelming to be part of it. Don't cut yourself off but try to find new ways to socialise that you are more At ease with 5. Feel as though the old me died 4 years ago. To a certain extent you have had to relearn what you now can do which before that you had 37 years of knowing the old one. So it's early days testing and explorinh new possibilities. Some things you will still keep doing but others are for finding new ways. Be curious and that may open opportunities that help you. 6. Have stopped going out as I no longer drink alcohol as a result..I don't drink either since sAH and rarely go out more from fatigue but there are different ways to connect that you need to now consider and find sonething you enjoy. Maybe something in your community, maybe helping with a youth programme teaching done of those 'fixing' skills in short bursts...socialising differently. Find your new way. Helping others is a good tonic too.
  2. 2 points
    Hi - I've used Titanium as my 'stage name' as, along with platinum, it's one of the sturdiest metals and that's why it's often used to decorate (aka repair) our brains. Firstly if you're a fellow SAH survivor reading this I want you to pat yourself on the back as the quoted SAH death rates vary from 45% to 80% within a month, combine that with the fact there are only 8-10k cases in the UK every year so some GPs only have one patient during their whole career then I think we're doing well! Especially when people hear you've had a brain haemorrhage they always have a tale of a relative or friend who had one too but they weren't lucky enough to wake up again. I had my first SAH in August 2010 (no headache previous to it) - I was walking on a treadmill at the time so have realised that I shouldn't believe what they say - exercise is actually bad for you! The SAH was clipped and I went through the learning curve pretty quickly as I run my own business so had to be on the ball to pay my staff wages at the end of the month. Part of me wanted to be able to be at home to do a proper recovery but the other part of me knew that I could do that for a long time but going back to work would still exhaust me whenever it happened and by having to use my brain it got it back into the groove quicker. As I was only 38 at the time I knew I was lucky in that youth was on my side. I had my second SAH on Friday 13th (previously my lucky date) in 2015 - again with no headache prior and literally just heading off to work. This time they looked to see if they could coil and they were able to so I avoided having hair like a nest this time. Within 8 weeks afterwards I had a large seizure (again no warning and hadn't had one prior) but fortunately the ambulance arrived quickly and gave me an oxygen fix - since then I've been on Keppra although it's questionable as it delays brain recovery (anti-cholinergic drug). I have had 2 cerebral angiograms since and have refused to have another one moving forward. The last time something happened in my brain that the neurosurgeons haven't heard of before so given the high risk I don't think my brain will entertain it again whilst I'm awake (plus they damaged the femoral nerve artery so it was mega painkillers and unable to walk for a week). They discovered I need more metal in the second SAH by it hasn't grown since the previous CA and I now have a third unruptured aneurysm but we're just leaving it until next year - I've done a comparative on the last 2 CAs and it hasn't grown significantly so it's safer to leave it be methinks. (Especially as I'm reading 'Do No Harm' by Henry Marsh - an insight into the world of neurosurgeons (humorous in some places and a wake-up call in others). So, that's the harbinger of doom part written. Do I lament my misfortune and wrap myself in cotton wool? Absolutely not. Every day when I wake I smile because I've woken up on the right side of the grass; when I'm tired as I've been working on a screen all day then I put music on and do silly dances; I laugh internally when I express my opinions knowing that I don't really have many brain barriers now so that's my get out of jail card; I can't drive so I see and hear the tapestry of life when travelling on public transport and I appreciate everything around me when I'm on foot. I'm not married and I don't have children (as far as I know) - it's just me, myself and I but the three of us seem to be titanium when it comes to coping with these brain hiccups. So, in the grand scheme of things I think I'm actually quite lucky and long may the luck prosper! Sarah SAH August 2010 - clipped; SAH March 2015 - coiled
  3. 2 points
    I used to get a lot of unexplainable cramps and sensations and I resorted to just trying to adjust my diet to make sure I was bringing in a lot of extra minerals and vitamin rich food. I found not letting myself get hungry really helped and I actually had some food supplements for a while. my doctor did blood tests as well which found I was a bit low in certain minerals so I took supplements but you should always consult a doctor before doing that. i speculate that the brain uses so many of the nutrients it gets faster when it heals plus all it's levels are out of whack so for me that's what made sense and over time the termors disappeared.
  4. 2 points
    Good morning and a warm welcome to BTG. You are in good company. There is a wealth of members` experiences over 10 years within the various forums. As you search for cases that you feel are relevant to you I am sure you get much encouragement finding how members have dealt with the challenges of their SAH. We only offer support, we do not give medical advice. As you mention in your post, your life has been totally turned upside down by your bleed. No work for three years must have been so hard given the type of work you were involved in. How did you cope? Often, the tendency is to try and get back to normality too soon and your body and brain just don`t get the time they need to adjust and recover. This can lead to frustration and disappointment as you discover that it is all these items on your list become very relevant and prevent you getting to where you want to be. Patience and listening to your brain and body are so important. Do you have family and friends around you? Your list of issues affecting you are common to most but in varying degrees of seriousness. Thanks for taking the time to share your experience on this site. Wishing you well as you try live your life post SAH. Subs
  5. 2 points
    Vermont Girl, November will be 5 years since my nasah. I still get occasional headaches. Especially if I've overdone things. However, they seem to pass pretty quickly. Tylenol is my only source of chemical relief. Two of them and a cup of coffee, plus a rest,usually takes care of it. I've had the "pain is your friend" talk. I think I've come to realize it is true. Our bodies are complaining and telling us to slow down and take care of them.
  6. 2 points
    Hi guys , firstly ive named myself appropriately as this is what happened BOOM. My story is simply a case of having a sudden onset of a sore head originating from the back of my neck and up onto my crown and then towards my eyes, this was followed by severe sweating and vision and cognitive impairment whilst driving home from the scottish highlands to on march 7th 2014. I courageously or stupidly managed to drive 40+ miles and admit myself into hospital, as I had no phone signal and absolutely no way of getting help as the highlands are desolate. Anyway once admitted to hospital on the Friday night I was being physically sick and couldn't open my eyes or function. The doctors in A&E quickly responded and had me diagnosed within" A SMALL BLEED ON YOUR BRAUN SIR" . After a Ct or MRI , can't remember tbh. after that I was in all weekend and finally discharged myself on the Monday morning. I followed up with the hospital as an outpatient and was further diagnosed with an ANEURYSM, then after that was ruled out it was an AVF then an AVM and finally after 12-18 months it was or I was offered no explanation other than a freak accident. ( So in other words they don't have a clue, and by not correcting anything, i've been living in constant fear for years now,just awaiting the big one which allegedly follows the SMALL LEAK in over 40-60% of leaks) BEHAVIOUR Now 3½ later I realise that I have changed dramatically in the way I behave and decided to look online and came across this site. Now following the incident I remained out of work for 3 years as I drove and iam a hands on mechanical engineer/fitter required to fix and operate heavy machinery in responsible situations, and only just returned to a minimum wage unskilled job in May 17 ,this year. Now I'm wondering if anyone can help with my overall behavior as I have become very 1. Forgetful long and short memory issues. 2 . Confidence and self esteem has left the building 3.. No bearing in or on where my life is going 4. Very anxious and uncomfortable in social situations 5. Feel as though the old me died 4 years ago 6. Have stopped going out as I no longer drink alcohol as a result.. anyway guys that's where I'm at in my journey and after my last contrast cerebral angiogram via the artery in my leg, I was given the all clear , as that's the gold standard test. I have only just started to try and live again by returning to work but I'm finding silly things extremely hard, like making friends and having a laugh. Holding a conversation is hard ad my mind zones out after 3 0 secs of someone speaking. so guys I'm looking to see if anyone else has felt this way and if anyone else has had these lerp impairments. If so what have you done, has it helped and finally had anyone had a second bleed after a small one . If so what age and how long between bleeds?v For me it was age 34 when this occurred and IM now 37', thanks guys . I will read other stories and join in tomorrow, but need to know to sleep. Take care
  7. 2 points
    Hi there welcome if your anxious see your GP, I had tremors and they did ease only when I'm stressed now are they obvious.
  8. 1 point
    Team - I'm eight weeks out from a Spinal SAH grade 1-2 . The usual intermittent headaches treated with panadol and sleep . But I've been left with 2 things I'd like to talk about . 1 is a settled tremor throughout my body (most obvious in my hands and 2 being waking up it my fingers in a cramped position my right large toe seems to be the same and was wondering if anyone else had suffered these symptoms and what course of treatment you used
  9. 1 point
    hi guys, my name is boom and I thought id introduce myself and hopefully get acquainted with everyone. I'm hoping to share my experience and I'm hoping that there are people who have had the same experience and that reside in the UK .. Sorry not hoping or wishing a SAH on anyone
  10. 1 point
    Hi Boom, Not nice to have are they small or large xx mess our lives up. I was out for quite a while after my Bleed and Hydrocephalus kept me there along with other problems. You will get better but it is a long haul. I say to my husband did I tell you that and he goes "yes Win twice " so if you see a man with a black eye that'll be my hubby lol Short term memory loss is usual, now ask me what happened 23 years ago I am okay but anything short term is a blur. You are recovering and it does get better, I couldn't remember my address so hubby wrote it on the wall and would cover it every morning and say "Where do we live". I sing songs to remember, it helps, so try it when you feel up to singing but only happy songs xxxx Keep Well Boom Winb143 xxxx
  11. 1 point
    Thanks, Casey. I've wondered about using coffee, I'll try it. I think the cognitive shift to "pain is your friend" may also be useful. In fact, this week I have been pushing too hard! I'm off to restorative yoga this morning - am hopeful that will help with many things.
  12. 1 point
    Welcome Boom I notice that you've posted elsewhere on the forum with what has happened to you, so I've moved your post here to get more responses.
  13. 1 point
    Hi boom welcome to btg xxx I had two bleeds one at about 22 another at 23 when I had the scan and was told there was an old bleed in there aswell turned out there was 2 aneurysms had the one that ruptured at 23 clipped first then the other xxx Now the other things 1 memory problem with both at beginning now it's mainly short term memory 15yrs later 2 Confidence and self esteem had none which is why I stayed where I wasn't happy but it's back now I take the kids on holiday alone to pubs for meals and out on day trips. 3 where/what your doing with your life does come back for me 5 years ago 4 I hated going out wouldn't go anywhere especially alone and I go out with friends and look at 2 5 the old me did die 15yrs ago but I prefer the new me now I didn't to begin with I hated her for years but now i am happy 6 I don't drink as when I was blue lighted to hospital they were treating me with hangover from 7th to 11th September with delayed treatment till 13th as hospital needed proper scans so put me off alcohol. I go out though and still have a great time you don't need alcohol to enjoy yourself Anyway hope things get better for you and keep us updated on how you are doing xxx
  14. 1 point
    Thanks, Megan, that's very helpful to know. That's exactly what I want - to "have some on hand" for those days it's more than a dull ache and interferes with sleep and functioning. Having trouble getting a response from the doctors office - frustrating!
  15. 1 point
    Tori - great news, thank you. The submarine is coming off the sea bed and will surely rise slowly to the surface! Keep us posted! Macca
  16. 1 point
    Thanks so much Win. So good to know my experiences are common.waiting for call back from doctor now. Have any of you had good luck with body massages following NASUB? thanks
  17. 1 point
    Just read your post,I'm so very sorry you are feeling this way right now. A lot of good advice has been given, so I will just offer you a virtual hug. You are not alone,as you can see! please be kind to yourself,you have been through so much,and there are plenty of better days ahead