Desy

Hi M Your brothers story mirrors my own, I collapsed playing sport, I was left over night due to heavy bleed and partner was told I probably not make it through the night. I was in a coma for three days and spent a week in intensive care and a day in hi dependency and a further three weeks in hospital. A doctor told me after it that the chest infection I developed was the biggest threat to my life form the actual bleed it self but while very treatable it adds a long time on to the recovery process and takes so much out of you at the time and what you won't see is the physios working on his chest to clear it, the physio used to joke with me after it that he needed a bed after my sessions due to big chest muscles, your brother could be very tired after the treatment too. While in hospital and during visits I struggled and just wanted to be on my own and the way I done this was to switch off, I struggled to talk, think, listen and move and when family visited it was no different, I just shut down. I also refused to cooperate with my family asking for small things to do to show them that I could do them, I stated to see these as commands as so many doctors, physios, nurses and other staff were "poking and prodding me" and I couldn't handle it. Would I be right in thinking his eyes have been opened for three days now with little response if so I was conscious for about seven days and refused to do anything including eating or drinking when I was capable of doing so and still had to be fed by tube. Some of my first memories were of being very easy agitated, confused, angry and trying to pull out catheters ivs etc, I would also hallucinate and hear things and again I would just go back to sleep to stop them. The few things that I would have liked not done so much are the demands family put on me to do things like try and move, eat, talk etc, constantly ask how I was feeling, talk to nurses or doctors like I was not there even while semiconscious. I would also suggest taking some photos of him lying in bed and hooked up to all the machines, it may sound morbid but its one of my partners biggest regrets as when I got better I went into denial and had no understanding of how serious it all was, it could help greatly in the recovery process as it will give him an understanding of just how serious it was and that it will take a long time to recover. I wish you and your brother all the best.

Excellent post, we share a few things in common. To be honest I wanted to reply to this post and have an input in it but it just seems like hard work as does other threads and that's why I have not posted on the forum much these days. I have a post in my head then try and put it into text and be all over the place trying to remember what I want to say and how to say it. Also I seem to be having problems with words and numbers whether wrote or typed which is annoying me and again making it harder than should be, and that problem is when I go to type a word or number for instance 'when' it sometimes comes out 'wehn' or '27' comes out '72' or 'the' comes out 'teh' and '458' maybe as '485'. Very strange and annoying as I seem to spend to much time reading over things and correcting things. Hey, there you go replyed to a post I wasn't meant to because it would have been to taxing on the brain to reply, but to explain myself I did, small victory

Hi hwyaden. Sorry to hear about your troubles only advice I can offer is try and find some one, a friend a family member or even just pop on here it will take some of the weight of your shoulders as this is going to be a long and hard journey but never give up. Stay strong.

Oh them oul smelly things they have been one of the biggest curses of my SAH literally put me back in hospital they did grrrr they were always worse in the mornings and would often wake me up. Similar to winb's experience a doctor said to me that they are just feelings and you have not done any thing wrong and nothing bad is going to happen and they will pass, so I try to ignore the feelings in my stomach and occupy my mind to combat them. When I feel it coming on which is usually everyday and sometimes more than once I concentrate on my breathing and ignore the sick feelings and butterflies and to occupy my mind I will do something as simple as think about what I will make for the dinner or what I will do with the child after school even something as simple as looking through the satellite tv listings to see what programs I would like to record for future viewing seems to work. I'm lucky in a way that I can do almost anything with my girl as long as it does not involve climbing or to much noise, may I suggest you do the old favourites like colouring in pictures as we all have an inner child in us and its surprising as to how relaxing it can be and you get to spend time with your girl while not taxing your mind and body to much and also teaching her how to draw. Try not to associate the pains you get now to the pain you had then with the pains now are you will just find your going back or thinking about back then and that is a backward step which means you might think about thy middle ie hospital, very sick, very sad, rehab and recovery which will stress you even more, the one thing I've learnt is that this illness is a vicious circle and every new set back has to be treated like a new illness with new thoughts on recovery. At the minute I'm dealing with my moods which are horrendous as low as can be, but I will deal with it and when its dealt with I will deal with the spasticity in my foot and leg, the seizures and set a plan of attack to deal with or learn how to live with them and then I will deal with all the other less serious things like the random pains the weird sensations, weight gain and jerks. If I tried to deal with everything at once I would be stressed to the limit and would probably implode and end up in a very bad place mentally. Oh in terms of music I'm listening to a group called sacred spirit, try a song from them called Indian dreams if that can't take you to the place you most want to be nothing will. Best wishes Iola.

Snap Win as I was the exact same, coiled, out of it for about ten days. Wheel chair for a good few days and when I would stand up I would rock back and forward and as my feet would point out they would hold me up but my heels struggled on the backward motion. Few scrambles there i tell you lol but it's all good now...

Have not got a clue what you guys are on about lol But if its to do with the piece of skull that got removed and fitted again after brain surgery that you think is moving then it is, and can move about for quite some time after surgery. Came across this info online a few days ago while looking into something else and if that's the case its fine if not just a horrible feeling. If not and I'm on a rant just ignore

Hello missy andddd yessssssss I get the bubbles in my head feeling and really bad when I move my head up and down and side to side, I also have the feeling of fluid moving about in my head and according to the doctors its a less know side effect of SAH but harmless. Mine started about two months after my SAH, I found out about it after searching online for 'fluid/water/bubbles feeling in head after SAH' can't remember what web site but its out there in cyber space somewhere lol Good luck and would you be a mint aero, smooth and velvety on the outside and cool on the inside or an orange aero, smooth and velvety on the outside and zesty on the inside lol If your not from the uk you probably just think I'm mad which I am, see ya!!!

Well sir what I picked up on in your post was the positives, small, but positive all the same, you can and will fight it all the way, and as my neuro surgeon said to me when I said "I shouldn't moan there's others worse than me" he replied "no, there is no one worse than you, you worry about yourself and how you can get better". Made me feel a bit better as I thought I was just being a nusience. I like you am just fed up with it all just tired of the whole thing, could honestly curl up in a corner go asleep and never wake up agian I'm that tired. Keep the head up, keep moving and eventually it will be all forward.

Morning peeps. Well guys not to worried about it to be honest, but the person before me and the person after might be more concerned. Not looking a hug or a shoulder to cry on and definitely not false hope if something was wrong, just a little reassurance. One thing I've gathered form my hospital stays/visits is how cold some doctors can be, I understand that if you do something long enough you become slightly detached from it, but their primary role is as a carer and maybe every five years they should do a day release course on the core values of caring for patients and how important this is in their recovery, I'm not just on a random rant as my partner and most of my friends work in the royal hospital and the stories are scary, we are talking about a lack of basic care, ive no real complaints about the medical attention. I've another appoinment with the doctor today (my own gp) so should get to talk more and hopefully get a few more answers. Cheezo its atrocious, I think in all my lifetime I've heard my mother curse a handful of times and even then we are talking about F and b at the most, we don't know how this illness works but it does seem that the only the worst swear words come out. So its hard enough to cross the door if you randomly shout and make strange noises but when they are bad swear words well you ain't ever going to go out. She will joke about it sometimes as she does also shout out what she sees like the wonder bra adverts that come on tv then boom out comes "boobies" lol She also says what she thinks which is a tricky one like my sisters useless partner who gets called a... Am... Well lets just say the c word and we will leave it at that. She was also given electric shock therapy years ago for depression which she still refers to as "absolutey barbaric" so she ain't to keen on doctors so add all the above togather and its easy to see why she won't cross the door. Bar all that she is as normal a mum as you get cooks, cleans runs a home as best she can and is always the first person we turn to in times of need and there's nothing she won't do for us. Can remember years ago when I was young and rebelling to say the least she said to me one day "Desmond I am your mother, I will always be your mother, no matter what you do good or bad,I will always be your mother,I will always love you and always be there for you" a sentence which had a profound effect on my life and on my future parenting skills. Iola my sister is like that and no matter what is wrong with me and how bad I get she is worse, feel like saying to her "aye but you didn't nearly die" to see what her response would be, probably something along the lines of "I know I didn't nearly die, but every day I feel like I'm dying" lol. Hold onnnnn have to stop now as you guys always get me in trouble for going wayyyy off topic nothing to do with my motor mouth sorry fingers lol bye

Well folks had my sixth month mri scan this morning, they did not inject the dye so that must be good mind I do wonder how they see anything if blood does not show up on the scans without the dye. Actually don't know nowt as you guys should know they tell you nothing there and then and only that the results will be sent on to your consultant, but as there's always a doctor there surely a quick "well desmond at a quick glance everything looks ok but we will need a closer look but should be fine" would be nice. For those that remember my mum had a scan today also but did not go, she suffers from mental health issues and has developed Tourette's she just refuses to leave the house, she tried and we tried but she can't do it and just to give you an idea how bad it is, she didn't visit me in hospital until the second week even though I was as good as gone and that she loves me so and was so worried she still couldn't leave the house and it took two weeks to work her self up to do it. She's really down now knowing that she wasted an appointment when people have to wait so long on them. Adios amigos

Now kempse shouldn't of said that, tis me after all and god knows what madness will follow... Our old brains they broke down, they went pop, got messed up too. Nick nack paddy whack and an lol too, will you laugh out loud with me too. Our moods changed sometimes good sometimes bad and it was sad. Nick nack paddy whack just laugh too, it will fix you really good. Lol can help you through some dark days and scary ones too. Nick nack paddy whack lol soon its never to late even a giggle will do. Laughter heals laughter soothes takes away them pesky blues. Nick nack paddy whack kempse laughs too soon the whole forums in stitches too. I'm a geg preaching to you about all the good lol's do. Nick nack paddy whack need my own medicine too Will lift me out of this dark mood. Nick nack paddy whack stop laughing at me, as I'm just going stir crazy. Right got to go, there coming for me, in a padded cell ill soon be. Nick nack paddy whack to my last lol. Only joking they'll be more on there soon. See see told you didn't I lol

I'm back!!! I think lol don't mean to sound rude but just can't be bothered trying to think these days, seems like hard work lol so just a quick response as its not nice to start a thread (chat) then just ditch it, espicaly one like mine. Have not been to bad the last week if anything just really tired to the extent that I've been taking a nap during the day which is something I never do. The epilum chrono tablets seem to be settling me down a bit and not just the fits also my moods, mind still get the feeling that I want to lie down and just never wake up again, not dieing just a long deep sleep, which is the exact way I felt about the night I collapsed with the SAH. Always felt that the night it happened that's how I felt just to tired mentally and physically and that's how I feel now. Have my six month scan on Monday so should have a bit of good news then, then I can start making plans for the future peteculary with work as I do not want to end up on benefits, enjoy working and learning and earning and well, spending lol. I've applied for an appernticeship as a gas engineer last week but after spending the last two days painting our bedrooms my foot is really sore and swole now im good at ignoring pain butbthink a five day week on my feet with hard graft might be to much, so don't know how ill manage it, would hate to go through all the training only for my foot and leg to let me down, also have an appointment in the spasticity clinic for either dry needling or Botox injections for the foot/leg and don't know if it will help or keep me of my feet for a short time as I think the Botox can be painful after it and you have to rest. All in all cant complain as I'm planning my future and not my demise so mentally in a better place and if work does not go the way I want it to go then I can say I've tried and its not my fault and I have a back up plan in place incase it doesn't. Thanks for the thoughts and replys guys it really is appreciated. Also thanks to my family and the way they have handled this news as when you feel like that its a fine line between letting there concern overpower me and make me withdraw more and giving me enough space to sort my head out while also making sure I'm ok.

Well now hello ladies Sorry for the late reply, been on a few times but just couldn't muster the strength to gather a reply. Been up and down from the last post but not rock bottom thankfully, only had one more fit from then although have been body popping big time lol Ach boo still can't string any thoughts togather, will try again soon lol but I'm ok guys. Xd And gentleman

Well guys I've hit a wall and I mean solid concrete and no sledge hammer is breaking through. Suppose it all started the day I left hospital after my SAH (for the first time lol) and thought to myself how good I felt, and I did, only physical problem was foot drop and mentally felt on top of the world, can't say I was surprised at how good I felt as I knew no differnt and was shocked to hear some of the stories on here at how difficult recovery has been for most of you. I've had no headaches, fatigue, tiredness or mood swings every day was just full of smiles and songs and the immense feeling that I was alive so maybe just thought that while at the time it was really bad, maybe everyone recovers differently and I was one of the lucky ones as the only thing I was going through was lack of sleep while never feeling tired and a few memory blips, a wonky foot and lots of pins and needles. It has been four months now and bar being admitted in again for three days for strange sensations in my head which they had no explanation for and I've since learned to put up with the feelings in my head. This day last week I was fine and had a quiet day no work just brought the child to school and came home chilled out, made the dinner etc and went to bed and then the wall just lay down and with no warning what so ever started fitting and it scared the life out of me, got sent to hospital and was kept in for five days, had a few fits from that including the latest one yesterday they said they think its non epeliptic seizures and prescribed epilum chorno, form that I have went through hell and back umpteen times highs and extreme lows so low infact that death seems the only escape My body is going through hell, my skin feels like its crawling and my face contorting, its just pins and needles, panic, hulicnations, sickness very random shooting pains and jerks, one jerk was so bad yesterday it felt like I dislocated my hip as my upper and lower body went different ways so quickly, I just feel so detached from this world and every thing in it, nothing seems real I have this strang feeling of falling to my death and that after that it will all be over, I also get a strange feeling that I just want to lie down just like the night I collapsed and go asleep and never wake up, that feeling is not new to me as that is how I felt after my SAH that I just lay down and went asleep and someone woke me up when they shouldn't have, just felt so tired after it all. The worst part was on Wednesday I sat in my car crying while thinking about what I would write on my suicide note for my daughter that was horrendous and the wake up call I needed, I spoke to my other half about it and while concerned I promised her I would not do anything stupid and I think she believes me and is being great about it and helping me but also keeping a slight distance as that is what I need right now, I really need to try and make sense of it and it gets confusing when other people tell me what they think as I'm spinning enough. Today I was high as a kite while yesterday I was fitting and feeling like an alien with weird moving skin, like come on if this keeps up I'm going to end up in an asylum, my whole body is crawling, tingling and pins and needles, I'm scared, not sleeping and constantly feeling sick with anxiety. The doctors I've seen cant help and if anything make it worse with there diagoness like non epeliptic seisures, either it is or isn't, so thye are referring me to a physcholigts. Found this feeling very strange tonight as I was driving back form the pub after watching the footie (off the drink for now lol) was driving up the road and just felt so at peace with my self while one of my fav songs was on and kept thinking how good it was to be alive, the exact feelings I had four months ago when I got out of the hospital and just get the feeling the last four months have been wiped and I'm starting again, but think I need to reevaluate my recovery process. Guys I know I can't say all this and expect people not to worry about me but the thought of people worrying about me makes me feel worse and please believe me I'm to arrogant, selfish and stubborn to give in, I will not do anything stupid my family need me and I need them, and the only reason I have said it in a public forum is that with all that has happened from my SAH you guys have been the most understanding. This could also be a warning to others that no matter how good you feel after such a traumatic brain injury, your brain can just switch off or play up at any time and when I hit the wall it happened in the blink of an eye. Sorry for the moan but you guys are my support. Ps I said nowt will happen as no doubt you guys would seek out a physic, send her to hell just to give me a kick up the back side

As of last week I'm unemployed, I quit had enough. Priced two jobs two weeks ago, real tiny wee bathrooms one had no window and both had small halls which ment it would have been hard to set tools up. When the owners phoned back to see if and when I could do it I told them I had picked up an injury in football and am out of action for at least three weeks due to ligament damage, now I don't like telling porkies but did not want to tell the truth. In the week prior to the phone call it had been going over in my mind that I did not want to do it, it was freaking me out and I'm struggling mentally as it is, just the thought of being in such a small bathroom with little light all my tools, tiles and adhesive was wearing me down. Made the decision there and then I had enough and knew it was for real after one of the builders I work for phoned to see if I would measure up two jobs for him, and I told him I had quit, funny enough he was not surprised as he knew of what I had been through lately, so that's that and any way the boss was an idiot and all he ever done was howl, he called it singing tut. I'm a grafter I will just get a job, fancy working in a supermarket or store, somewhere bright and airy with plenty of people around. I've also a very understanding partner who just happens to have a good job and is totally understanding and is more than happy to pay all the bills until I'm sorted, think she's just disappointed that this thing has robbed me of a job that i built from scratch and over fifteen years and loved and was very good at, I'm not on benefits nor never applied for dla or sick pay so it won't be easy but for the long run its for the best... I think lol.

Cheers guys, just not to fussed on a drug that plays with the psyche of the mind and this tablet does as its also used to treat drepresson and physcotic disorders and having a family with history of depression and the damage the meds they done which makes me sceptical... That and the fact I've little hair as it is and can afford to lose no more hehehe

Offt the dreaded noise thing, my three year old daughter was swinging the child gate at the bottom of the stairs earlier and it was making a loud squeaking noise and I just froze on the sofa, just wanted her to stop but couldn't move or get up to go to her, just screamed stop then went into a fit, that was the first from I got out of hospital. When I told my other half that the noise triggered it she looked at me as if I'd two heads tried to explain other that certain sounds are intolerable now, like nails down a blackboard and in some cases hurt my ears. Another bad one I can't stand is the noise from a bag of potato crisps, sounds so loud and repitive that I have to leave the room, and bangs are not bangs no more they are sonic booms and scare the life out of me now. I'm also having presure problems with my ears as they are constantly popping and at times feel as if they are moving due to what seems like a build of air, they also get soapy water trapped in Them after every shower and then crackle for ages. Told the doctor that I thought my hearing had improved, he said it hadn't and that I'm just hearing more due to my senses being heightend after my SAH that goes for my vision, smell and taste buds as well, they are not better I'm just taking more in and anlising it more.

Wheyyyyy heyyyyy another squinty walker hehehe I get it to, noticed it in a car park, thought it strange so decided to walk one of the white line markings an low and behold off I went, it really does feel like a magnetic force is pulling me and the more I try to straighten up the more conscious I become of it which in turn makes it worse, I do have problems with pressure in my ears, some people's pop on an aeroplane mine pop after a few stairs lol and sometimes when I chew. It's not often it happens and does not really concern me if anything I just put it down to just another one of the weird and wonderful things that happens pre SAH I do have a few eye sight problems which seem to be getting worse so I will monitor it and when I can't see the pint of beer in front of me I will do something about it Oh nearly forget as I tend to go of on one, welcome to the site little flutterfly!

Alright troops, well as above really, anyone used or know of anyone who has used this medicine, can't really say I want to take it , this is due to past experience and not just a whim. Thanks.

I'm free got released today phew, that was one boring weekend I can tell ya, and the results of the tests, ack sure ya's knew already, I'm crackers, radio rental boogaloo hehehe. Nah seriously, the scan came back good just a bit of scaring around the anyeurysm site but no obvious signs of epilepsy but the nurses witnessed two fits and one of the worst ones I had and spoke to the docs about them and how they play out. They said I have non epileptic seizures and have prescribed 300mg of epilum chorno which I can't say I'm looking forward to as some of the possible side effects, I value what little hair I have lol and are arranging sessions with a physiologist and psychotherapist as a lot of it is related to stress and anxiety, first I knew I was stressed lol jezz have my moments like us all but to make me fit like a man possessed, strange I say. Anyways will see how the next few weeks plan out as I've had plenty of big jerks but no fits in two days. For those like me who are wondering what it is, don't just google it go on you tube and search 'non epileptic seizures' and you will see just how bad it can be. There is one good point and that is I know when they are coming as my breathing gets faster, vision distorts, jerks become bigger and more frequent, i get pins and needles and panic sets in so I can take my self off side and lie down then ride it out. While I am conscious and can respond I hate when anyone speaks to me as I have to go deep into myself and fight it and its hard let alone weird but after five of them I caught and fought one of yesterday, I left instructions not to be spoke to or distracted while it happend to see if I can deal with it as I won't always have some on around me and I did it was not as long nor as severe, bit like putting a leash on it and using the energy up in a differnt way like fast small shakes rather than long large jerks/jumps which hurt you after it. After it I laugh, smile or grin usually due to being nervous then maybe a few tears then just lie there zoned out for a while. See told I was nuts poor shirnk won't know what hit him and will probably end up committing himself after a session with me lol

Wow scares me sometimes to think that 3 years on guys like your self still have thoughts on and problems due to this illness, before I found this forum I was assuming that as bad as it was it should be completey fixed, gone, over in maybe 5 or 6 months how naive lol Your daughter sounds great and the fact she said she's so proud of you is amazing, the day my daughter tells me that will be the proudest day of my life. I would suggest while your taking your along the beach maybe take 5 minutes to your self away from anyone put a cheeky we grin on your face, give yourself a pat on the back and say to yourself "this is me, I done this, I am alive and I shall not be defeated" if that doesn't make you feel euphoric, nothing will as this was probably the biggest battle of your life and you won, yes you had help and support but you were on the front line so you deserve the first salute! Have a fan dabby dozy day and next time I'm over seeing the family in Southampton we can give each other a pat on the back... And get drunk lol bye

Just to continue on the thread I took of topic (hmmm that don't make sense does it lol) Still in hospital guys still waiting on my scan, word of wisdom, never get sick on a weekend especially a bank holiday one. Been seen by a few doctors who think it's a build up of adrenalin due to the constant anxiety attacks and if I'm right in thinking its a common enough side affect for SAH folk, one guy on here described it as "every morning I awake panicking thinking the world is about to end, while I know its not I still get the butterflies, sweats, nuesea, shakes and fear" that's me to some mornings and almost everyday all day, like having a very level headed guys head on a nervous wrecks body. Due to the constant fear my body keeps producing adrenalin due to the fight or flight predecessor rule and my normal activities I'm wil never burn it off so it stores up, but it your body can only take so much before it busts and that makes me fit and its bad looking my feet can lift of a bed a good few feet my arms fly in the air and my body just shakes, twists, bounces and contorts but I'm concise and can say one or two words like ok yes. Had three on Thursday night at home two in hospital on Friday night, none yesterday and one minor one today,they vary in degree of severity today's be minor, lots of small jerks and fast shakes to the one on Friday which was really really bad, was really glad the two nurses who stood over me seen it as they can tell the doctor just how bad they can get. So there will be no scan tomorrow due to the bank holiday so will be done Tuesday and then out after the results which I don't know if are done there and then are take a day or so which might be the case as it says on my med notes, cat scan and neuro appointment. Any how's going to search this forum for the guys who suffer from anxiety attacks to see what they do done, will up date after scan.

Think I've took this thread of topic enough so will start a new one Mary

Yup me two and mostly with buildings more are less only buildings and still happens 6 months later. Will say to who ever is with me "that building was never there becore" yet will know the one next to it. Just another one of the strange traits of this illness lol

Still in casualty I'm such a trolly dolly now I've been on it that long lol Can't wait to get up to the ward as its my partners ward and ill get spoilt rotten hmm midnight now prob not much point now tut lol So not the big e phew but the big a lol three fits last night and two in casualty today it's anappalectic (spelling) lol shock I've to much adrenlen and go into shock which gets me pumping quite literally sends me crazy as the doctor says "are body's are still programmed to think we are being chased by lions lol) and go into shock to escape That has to be the funniest prognoses a doc has give me yet, I was ROARING with laughter boom boom lol Going to keep me in over night, do a few more tests mostly observestional and come up with a plan as how to reduce it as its so bad the doctor had to physicaly hold my head while another checked my eyes, it's so bad I can't even hold a cup of coffe or I will get sizzled. To be serious for once mind I will honestly say that was the most scared I've been during any part of this illness