Gill C

Go you Dawn, some times the easiest thing is the simplest - the truth x

WAs this report done for work? I would guess that they consider what the options are if you're not fit to return to work for a while?

HUgs to you Mel, I can imagine how hard it is for you foodwise. I recently had a throat infection & everything tasted salty, even sweet stuff. The brain ia a marvellous thing so I hope your sense of taste will return soon for you xxx

I truly believe a pets unconditional love for us helps us to heal faster. There is def something theraputic & calming about stroking an animal especially a purring cat, they use pets in old peoples homes for that reason. It also gives us something else to think about & feel responsible for when we might only be thinking about how we are feeling & what we have gone through. My cats were more scared of Nathan so very rarely came to fuss over me but Heathcliffe was def more cuddly in the last year or so poor old boy.

Hi Leon, you are just up the road from me, I live not far from QA What a story you have & how great are Wessex for saving our lives (there area few of us treated there) If you get your medical & you fail do appeal, make a not of the things that you feel have not been taken into account. I had to appeal last year & was terrified too but was gob smacked when the appeal went in my favour!! Unfortunately now I have had my ESA stopped as you can only have contribution based for 12 months & I'm almost at the 2 year mark in July so mine stops at the end of this month. My hubby works a nornal week so we can't get income based ESA so the only 2 choices are JSA for 6 months or at my next medical to try for the support group. I am not going to sign on unless we can't manage as we are, things will be very tight but I don't think I am capabe of much meaningful work. I am ok for maybe 2-3 hours at the most (depending on what is happening around me to be honest) before I hit that wall of fatigue so I can't see me even being able to do a 4 hour stint. I'll be thinking of you & crossing everything for you medical, worrying times

I hear you all & echo it right back at you. I've been there & cried so hard I thought I would hurt myself - its usually done in private these days as I can't explain to anyone why I'm crying> I don't even know myself a lot of the time. The anger for me is the worst part & I can go from 0-60 in a split second, however since I've been on the anti d's I'm less inclined to lose it completely or want to strike out at things. I know I get angry with Nathan because he doesn't understand the hugeness of what I've been through & so makes no allowances for the me I am now. Being told I miss the old mummy was truly like a knife to my heart & I really sobbed for hours after that. I don't think hubby understands hence the crying in private & sometimes I do feel that life would be easier for them if I wasn't around but it's better to have the new me than nothing at all. I think you deal better with the anger as you accept who you are now, I attended Headway with a guy who had a bike accident only a few months before & I could tell his anger & frustration were just below the surface, he actually scared me!! He couldn't see anything wrong with his behaviour or a need to alter it so I say we're doing so well to recognise those emotions & embrace them, on that road to the big word of acceptance.

SAndi I too think I am more tired now than I was in the early days but hubby keeps reminding me I am doing sooo much more than I did. I am doing the school run & driving isn't easy as I have to concentrate more because of not having single vision, the noise in the playground is wearing too! Most nights I cook a meal (not always from scratch) & do washing etc, the shopping online takes some feat of energy too. I think I also underestimate how much being on the computer tires me out too. I have noticed how much worse my spelling is these days too, I really have to think about some words whereas it was second nature. I def don't read as much as I used to, just don't have the attention span! In the early days I would sleep in until 10 or 11am & be in bed very early or nap in the afternoon!!

I would say check with your neuro before this type of stimulation as I know coils can move & compact over time. best ask the experts?

Lizzy are you pushing yourself too hard? Usually the headaches are a sign of that & hard as it is you need to slow down a bit & drink lots of water. You get lots of bad days in a row early on but slowly you will have good days inbeween & then you will realise you have more good days than bad. Its not easy to remain positive all the time, even the best of us get fed up with feeling rubbish (i certainly get fed up of saying i am tired all the time!!). If you are feeling really low perhaps its time just to talk things over with your GP & see what kind of help they can offer. Have you contacted Headway too, I found them out 6invaluable from about 6 post op & it was great to meeet people who understood how you felt without saying anything. Sending you big hugs cos it sounds like you need them. You can always PM if you need a shoulder x

Dawn I found Headway really useful & initially I didn't see what they could offer me. I found that the general stuff about head injury applies to all of us no matter how we became injured (mine is purely from the surgery & vasospasms). I think it would be useful to go & see what they can do for you & then decide if its for you or not.

Me too Win

I'm quite an emotional person but it is worse now. I cry at the slightest sad thing on the tv& someone else crying is guaranteed to set me off. I don't try & stop it if I'm at home but I have cried in the school playground before now but no one noticed!!

I would say only partially for me, I can plan & cook a meal, plan & make a card but when it comes to dates & times I am terribly confused (also with numbers & money on the odd occasion). Yesterday I signed & dated a cheque April! I have been to the hairdressers a day early & been a day late too. My friends birthday is Valentines day but I wrote it on the calender as the 15th Feb!! I constantly have to check the dates I put on the calander especially for school as I lose or gain a day in transferring them over

I agree with karen, if you look back at some of my early posts you will see me weeping with frustration at not being able to do the cinema, lunch & then shopping with my boy. Something I would have taken for granted pre SAH. I was very hard on myself & I know with all the advice here I picked myself up, dusted myself off & started all over again. There are times I still feel guilty, my boy said something to me not so long back that was like a Knife to my heart 'I miss the old mummy'. I mean like I wouldn't give me right arm to be that persona again too. I've never said why me but I have felt extremely guilty for what I put my boys through & yes I have thrown out 'it would be better if I hadn't survived' in an arguement cos I felt like dead weight in the family. Now I feel grateful to be here to see my boy growing up & realise it's better to have me as I am now than not at all. There is a new me & in some ways I am better than the old me. I'm a lot more chilled, stress less (except about benefits)etc. This is how its been for me & will be for you. I still groan when someone says 'its early days' but it is sooo very very very true. Things really do get better & you can be better (different) to the old you, there will be new purpose in your life & new ways of acheiving your goals albiet maybe slower. Really be easier on yourself & talk to your family about the difficulties you are having, also to the counsellor & maybe your GP if you feel you need further help.8 weeks after hospital I think I had just made it to the local shop & back(we live on a hill) I was breathless & shaking but I did it!!! If you ever need a shoulder I'm just a PM away xx

Hi & welcome Tom, you are in the right place so pull up a chair & make yourself at home! What you are describing is all perfectly normal & sure won;t the first or last time someone with an anni has been told it;s a mirgraine & sent home with no treatment. you have been through something huge & that takes a lot of getting used to, the 'nearly dying' bit is hard to accept & even more so when people say you should be grateful but you don't feel it. If you haven't already read the Brain & spine foundation#s booklet on anni's you can contact them & ask for a copy which is fairly basic but useful nonetheless. Their website is also useful although not as busy as BTG. The biggest worry post op are the headaches but they are normal & quite often caused by the blood from the bleed dispersing. It helps to drink lots of water to stave off the headaches & if they are worse after exertion to take things a little easier. Also if you go to the Home page on here & look under Inspiration read 'letter from your brain' which is a great piece of writing & really helps you understand what is happening in there. lastly the best place to be is here as there is always someone to help or advise no matter what you ask! You are lucky to find us so early on (yes it is early on until you are at least a year post anni in recovery terms despite what your neuro might have said) Take care xxx

Sally I think its a case of earning more points on the medical - not sure but I think you need 24 for the support group. Basically for me it means saying I'm worse than I was over 12 months ago. I am due a medical soon as I'll stay in the system despite them not paying me anything Crazy. The Job centre plus sent me an another form which is a request to be reassessed, ESA 10/11 so I guess you could ask them to send you that form. I have no idea how we are supposed to manage either, apparently cos I have been sick for more than a year I am entitled to nothing, zip,zilch, nada - how does that work then?? I do not want to sign on as I have barely enough enery to make one or two cards, do the school run & cook a meal. The computer course I was doing for 2 hours a week just zaps me completley so I guess I could work 2 hours a day or so but how many jobs are that few hours?

Paul if you speak to him or Mel please pass on our love & thoughts. My mum was diagnosed with lung cancer & had a lung removed so I understand what the familyare going through. Life can be very unfair to the nicest people. Sending love to you too xx

Don't forget that its not just the doing that is tiring, noise & movement around you takes up a lot of brain power. I find when I visit my friends on a Tues even if I'm not doing much just the noise & movement of 12 kids is enough to wear me out. You know this is so cos you said the race setup tired you out.I think it's very easy to say I've done nothing so why am I tired & get frustrated but just 'being' is tiring after a brain injury. Some of your filters don't work so well post anni so your brain is processing harder than its ever done before.

all sounds normal to me, a high then a crash & burn. It comes from doing too much one day & then you suffer for the next day or two. You will find when you take things slower & more gradually there won't be the highs followed by the dips/lows. Things do even out only when you take it slower even on the very good/normal days. x ps I have calendar problems too

I've had a phone call from Job Centre Plus confirming that contribution based ESA is being stopped once you've claimed it for a year. For me that means virtually immediatly (1st May) as I have been claiming for almost 2 years. I can't claim income based ESA as Ian works more than 24 hours so its either JSA & signing on or appealing to be put into the support group for ESA. I'm currently in the WRAG (work related activity group) Just thought you should be aware that this is happening

During the time my anni inflated & it being diagnosed I was given amytriptaline & this was the only way I got any sleep. I slept a lot in hospital too which is very unlike me as I don't usually snooze during the day, at night I had the amytrip too. Last time I was in hossie they gave me sleeping tablets & they just didn't work for me as I am a light sleeper generally & hospitals are so noisy. When I was discharged I carried on with the amytrip but nit taking it every night. I still managed about 12 hours & then would sleep during the day too. Its only been the last 10 months or so my sleep pattern has been erratic, this concincides with not needing to sleep during the day. As my brain has got more active I find I sleep less. The anti d's I'm taking are sedative & I still take the occasional amytrip if I have a run of not sleeping well. When I was ill I tried all sorts of tablets & nothing worked, I was feverish & dozed more than slept. Now I'm feeling better the sleep is better although I had a bad night last night & was still tossing & turning at 3am, I took an amytrip then & slept until the alarm went off at 7am. I have heard that its very common for sleep patterns to go crazy after any kind of brain surgery but no one can explain why. Short of taking sleeping tablets or amytrip the only other thing that should help is excercise. If its affecting how you feel & carry on during the day I would speak to your GP but herbal tablets work for me too sometimes.

I can't answer why your current medication isn't working as not medically trained but maybe the part of the brain it helped had been damaged or that another part of your brain is responsible for the depression. I'm on a low dose of mirtazapine for depression & I wouldn't have said I was depressed. I was howeve very low & let the fatigue take over my life & stop me doing things. I didn't realise how low i was until I took the tablets for the first 2 weeks & felt lighter & for the first time in ages happier. The ruling emotion for me most days was apathy or anger ¬ a lot inbetween. I really wish I'd sought help earlier, I was offered anti d's a lot earlier & I refused them because I'm 'strong & don't need any help from anyone'!! I would recc going back to your GP & talking to them to see if you need adjustment to your meds or something different, don't carry on suffering alone (())

Can you filter stuff back to her via another family member? My choice would be to say you find it really tiring but pass the blame onto your GP or counsellor who tells you you need to keep contact to a minimum & spending that long on the phone is having adverse effects. If this could be filtered down to her by a reliable family member who could also add that you haven't wanted to tell her cos you are aware how much she cares for you that might shift the blame a bit more too. I know exactly what you mean though, I have a large family but when i went in to have my op I only told close family (brothers) & asked them not to tell the more claustraphobic members of the family. I have one aunt who persists in thinking of me as a little girl still & she told when my son was born how happy my Mum would have been (we lost her before we got pregnant) in a Christmas card (like I didn't miss my Mum enough already & mourn my sons Grandma) so I knew she would create a big fuss & she was too far away to be any practical help. As it was my hubby spent hours on the phone each night to my brother & friends updating them without her histrionics!! I eventually told the rest of the family in a Christmas letter which basically said I'd been very ill but was now better. I then recieved a 7 page letter off her demanding why we hadn't told her at the time. Just what I was hoping to avoid so I do understand where you are coming from.

Ian I had an elective clipping ( as in I chose to be clipped & it wasn't done after a rupture). Quite honestly for me it was better that I didn't know until the day before what was going to happen as its less time to stress about it. I went down first on a Sunday am & took about 5 hours, all I remember is being on the gurney to go down & hitting the edge of the lift floor which wasn't aligned properly with the ward floor & then thats it until I woke up in recovery. I did feel a bit like i'd been trampled for a day or so but the pain from the anni had gone which was great. All I would say is to rest as much as you can & take your time recouperating whilst you have the nurses 24/7. Good luck & if you need to know anything more just give me a shout x

Kaz I have been on low dose anti d's for about 6 months & for sure I am a lot calmer & less angry now. I went onto them to deal with the infernal fatigue issue which was really getting me down & like you I wish I'd gone sooner for help with the anger problem. I would say it took 2-3 weeks to feel happier & gradually over the last 4 months I have felt less & less angry. Take care hon xxx