Gill C

Win I have never ever heard you moan so I know it must be bad. Please go & get checked out just to have peace of mind. Gentle hugs for you hon xxx

So sorry to read this news, thinking of you all and sending you hugs & strength x

Hi Anne You are a couple of years ahead of me (I am just gone 3 years post op) but yes I'm still suffering mostly with fatigue. I can manage it better now but it can still creep up on me & floor me. At the moment I'm not sleeping too well so its a cumulative effect but if I try to sleep during the day I can't sleep at night. I'm waiting for some black out eye masks which I hope will help as its been worse since the clocks changed. I'm also better at knowing when to sit somewhere quiet & recoup a little. I also get fed up of answering that I am tired when people ask me how I am, I tend to say I'm ok now (I'm sick of saying it too:shocked:)

I just re read some of my posts from the 2 month mark, boy was I sure I could be back to normal even though everyone told me it would take more time!! I was pushing myself far too hard & emotionally I was a wreck, lots of temper & tears. I have always been on to let it iout (as hubby will attest to) but I didn't expect to feel so much emotionally unstable. I was still convinced at that stage I could do it all on my own!! It wasn't until Jan (6 months post op) that I got help from Headway & that was the start of my road to acceptance. I did see a neuro pysch but not for counselling which I thought I needed but for mood management (CBT basics) which helped some but wasn't really what I needed. 2 months is so early (insert scream of frustration here!) & for us looking back its much easier to give advice than it was to accept it at that time. To all you newbies, welcome to the family & it really does get better (just be patient!:crazy:)

Lesley I was given the choice of clipping or coiling (my anni didn't rupture) & chose clipping because then I wouldn't have to have 6 monthly angios. Mine wasn't painful but I did bleed from the site of entry for a long time & I had a huge bruise afterwards. I didn't want to go through that every 6 months so although clipping was a more invasive solution I chose it. I have odd veins, they struggle to get lines in & blood out so my experience is probably specific to me.

I think if you have been clipped they usually stay put & you're not usually called for angio's again. I had one when I arrived at the hospital & was discharged at my 3 month review(with no further scans needed) . Unless you are having problems I doubt an angio would be the first scan they would use, more likely an MRI I would think. Not being medically qualified I couldn't be 100% sure but personally I only had the one. With coiling there is a possibility of them settling or compacting so that's why coiled people have reviews & angios every six months or so.

NASAH is none anyurism sub arachnoid haemorrhage so a bleed with no known cause, its a bleed that didn't come from an anni, most are self fixing & don't require further preventative measures like clipping or coiling. oops Penny got there before me, I'm not sure of the other one either (sorry), The only thing I can think of that its something sub arachnoid anni (I would call mine an saa as I didn't have the bleed cos mine was found & clipped before that happened)

I hardly used to drink at all but post op I drink a lot more. In hospital I ahd to drink 3l for my trans cranial dopplers to come down enough so they could let me home, I'd been on gelofusin to bump my pressure up so I just had to do it. I was wearing a groove in the floor from my bed to the bathroom tho. Now I drink lots more but def not 3l unless I have a headache day which means I drink more to ease the pain.

Hi Lesley & welcome to BTG Yep all sounds normal to me though until I found this site I thought I was doing something wrong. A few weeks after discharge a gp friend asked how i was & I said I was fine! Then he asked me how I was doing emotionally & I promptly burst into tears! In the early days I had a lot of help from headway & learnt that all those feelings are not just for sah patients but all brain injury patients regardless of how it was caused. 3.5 weeks is so early days, things will still be up in the air so don't expect too much of yourself, read a letter from your brain on the home page. I find it still helps to put things in perspective for me. 1.5 weeks being at home is jsut starting over so take things slowly, keep a journal & drink lots take care xxx

Hi doodles, I was clipped & for sure the jaw pain is normal as they cut through the muscle to the jaw during surgery. it does ease off. Yawning was painful in the early days so try not to worry about that As for head pain I used to get a creeping feeling & my scar area was very itchy as it healed. I wanted to take my skull off & just scratch myself to bits! Oh & the staple nearest my ear was always the most sore & itchy too I didn't get numbness on the right side of my head after surgery but did get numbness after a dental visit which involved taking out a tooth on the right side at the top. The feeling did gradually come back & now my face feels absolutely fine!! I also remember scar tenderness & I still get tender spots on my skull related to the surgery but nothing that paracetamol can't fix. If the pain continues & you need painkillers then its worthwhile contacting your neuro nurse if you have one just to get it checked out & make sure there are no signs of infection or swelling. There really isn't much info given out when you leave hossie although the Brain & Spine foundation do do a small booklet which talks about sah & the operations that there are. In reality its the odd feelings & up & down emotions which we need the most help with but as we are all so different its not easy to quantify what 'recovery' is for each of us. This is def the best place to get info from so keep on asking questions & we'll do our best to help Take care hon xx

Hi Mick & welcome to BTG, sad to see another person not treated properly by hospitals. i know SAh#s are pretty rare but still with a thunderclap headache they should know what it could be! Many of us on here have been misdiagnosed or not treated as promptly we would have liked. You are still early days as Sarah says, I remember just having a shower & getting dressed would make me exhausted & wobbly for the rest of the day. I didn't have the nausea which I imagine is part of the bodys reaction to blood in your spinal fluid. You need a lot of patience in the early days not to push yourself too hard or expect too much of your healing brain. I am almost 3 years post op & the headaches are lessening but the fatigue is still a problem although I have learnt strategies to help me deal with that. You'll find lots of great info & personal experiences on here, it was a lifeline for me in the early days & I wouldn't have come so far without it. Take care & keep in touch x

Hi Sarah & welcome to BTG. nathan was just turned 4 when I had my anni (no rupture for me but clipping & vasospasms) & although he seemed to cope well with it he did take a lot of reassurance that I was ok. I was very lucky in that Nath was at nursery part time & they took him full time when needed at no extra cost. Hubby was also able to work from home for a few weeks when I first came home which was fab. He also worked part time when I was in hospital & came to see me every day (not easy doing a 40mile round journey every day with a 4 year old!) I would def say the first few months are a huge learning curve as I know i thought I would buck the trend & be back to normal after a few weeks. I was sleeping lots in the early days & having day time naps too & when I tried to do too much I really paid the price! You soon learn to pace yourself & avoid things that tire you out too quickly but you can still try to add a few more activities if you feel ready to. With such a young child around you really do need help wherever you can get it from, even if its only to look after him/her while you sleep. Try & sleep when you need to or just rest somewhere quiet & dark which will often help just as much, drink lots of water too cos it really helps the headaches. You will also learn to spot the signs of fatigue coming on & be able to rest before it really hits & causes another headache. Take care & rest when you can xxx (oh & housework will still be there tomorrow!)

Makes total sense to me, I push myself & then hit the wall & then lose confidence because I still can't do stuff I used to do without thinking about it! Today I am struggling cos Nathan is poorly, its very distressing watching your child in pain & not to be able to do anything. We ended up at A&E which in intself was tiring & only now he is in less pain is the strain of it hitting me. Add to that the disturbed night & I really can't do anything meaningful tonight. Usually I fire fight so I plan tend to do things in small bursts or to leave early if I need to, if we are out for the day I need to sit somewhere quiet & regroup. Like you I find myself not doing things cos I don't want to not be able to cope in public or to need to get away from people & noise if I need to. But if I get something like today thrown into the mix it really throws me off my stride. I don't think you can plan to the smallest detail, sometimes you have to go with the flow & not beat yourself up if you can't do what you planned. Planning is good for us post sah but not to the extent that we beat ourselves up if we don't achieve everything on the list. I have become lots more laid back I used to be (not in everything I admit) & things not done today can be done tomorrow. My health is much more important these days. Sending you big hugs cos it sounds like you need them (()) xxx

Emma my plan was for natural waterbirth with only gas & air or pethedine at home!! I almost had a c-section in the end & was only 12 mins away from it!! I think its safe to say my birth experience was about as far removed from what I planned as it could be!!

http://commonhealth.wbur.org/2013/01/whats-a-natural-cesarean-and-how-natural-is-it-really

I know both Jess & Lin had babies post sah & I'm sure they will be along soon. I know you say you are completely recovered but there are some things you need to consider when giving birth which you may not have thought of. I think the risk of causing yourself any further harm from the anni is covered by what the neuros have told you. However if you suffer from any fatigue post sah then you need to consider how a long period of contractions might affect you. For me it would be the tiredness which would concern me the most if I were to have a baby post sah (I'm too old to consider it now) My birth although pre sah was long & tiring, after 12 hours I could no longer control my breathing & pain so I ended up with an epidural which then led to needing a foreceps delivery as I couldn't feel to push (sorry any guys reading this! I think you need to consider what form of pain relief (if any) you would want & how you will cope with a long labour if that were the case for you. I would def listen to the gynae & try to come to some form of compromise which will allow you to manage your tiredness whilst having the birth you would like. Also discuss your concerns with your midwife & see what options they can offer you. I don't know if its commonly offered but there is such a thing as a natural c-section where you are given the syntocin once the c-section is done so the womb contracts & the baby is born with the contractions but with the benefits of a managed delivery.

Teech in the early days of my anni (before it was found) I was in so much pain at night I couldn't sleep until they prescribed amytrip. I took it constantly through my time in hospital & afterwards (now have been taking it for 3 years) & because not sleeping made my symptoms so much worse they continued to give it me. Problem is I am now so used to taking it I can't sleep without it, I am trying to wean myself off & have gone down to 20 mg instead of 25 & would like to cut it down to 10mg soon. I know my natural sleep pattern is shot to pieces but at the moment I feel sick I am so tired (had another bad night last night) so it doesn't look likely I can reduce the dose. In fact my GP didn't seem inclined to let me reduce the dose, she was in favour of still taking it which suprised me! I'm pretty lucky in that my headaches are usually go with paracetamol or paracetamol with ibuprofen. Yes I do feel heavy the next day sometimes which is why I want to stop taking them

I lost my mum 8 years ago, it does still hurt & I wish she was with me & could meet my son (she died before I got pregnant with him) & I know she would be very proud of him. Its a cliche to say time heals but it really does, the pain when she went was horrible but it is easier now when I think of her. I am sad & miss her but I too feel she is always with me, I reckon she was my guardian angel when I had my op & made sure I would be here for my boy ( I was told once when Nath was a baby that my mum sits in the chair & reads stories to him)

I rarely remember dreams pre or post op. I know I seem to have more 'waking dreams' the ones that seem very real even when you wake & those leave me unsettled & headachy. My sleep pattern at the moment is rubbish despite taking amytrip & the sedative anti d. I most commonly wake at 5amish or as the sun is coming up. OUr bedroom faces east so as soon as the sun comes up our room is bright & the wooden blinds don;t keep the light out. I haven't been able to sleep in at the weekend since the clocks went back

Hi Gary & partner As Neil says 8 weeks is still very early days (insert scream of frustration here!). At that stage I was sleeping in until about 10 am & then having another afternoon nap & going to bed early. I was cooking a meal & partly looking after my then 4 year old but I wasn't doing much more than that!! Just getting out of bed & showering was exhausting. Try googling spoon theory & that might help you both to read it & apply it to your situation. I remember Lin using the analogy of a broken leg in terms of what you should expect yourself to be able to to. You are expected to stay off the limb for 6 weeks & place no weight on it. Your brain has had a mcuh bigger trauma & is never totally silent so why do we expect it to heal so quickly? The lack of initiation of tasks is something we've all gone through I think, I found it hard to settle to anything & couldn't concentrate on anything for more than a few minutes. If he sets small daily goals & records them he can then look back & see how far he has come, sometimes we miss the improvements cos they happen so gradually. I personally had a lot of help from Headway so it might be worth you seeing if there is a branch in you area, they offer social mornings & maybe some course to help with what he is feeling (unfortunately the local one to me doesn't do them any more due to lack of funding). I certainly felt I was improving more when I joined them having thought I could do it all on my own. I hope some of this helps & my other advise for him is to communicate with you, rest as much as he needs & drink lots of water to help with the headaches. xx

I was told I had to inform the DVLA of my operation (I didn't have a bleed just the anni) & sent them my licence voluntarily. I filled in the necessary form & badgered the DVLA to see what progress was being made. I spoke to the registrar to see if the DVLA had written to them for a report, they hadn't & didn't. About 2 months in I was told I was ok to drive unless the DVLA revoked my licence once they recieved the necesaary info!! So I was ok to drive until they (possibly) told me I wasn't:crazy: At my 3 month review in August my registar discharged me but wrote in her letter that I should not drive until the DVLA said I could!! Just going round in circles here!! In the end it transpired that I needed a letter from the eye clinic stating my vision in one eye met the required level & that if the other eye was coverd the double vision was resolved. I also had to get the registrar to write to my GP stating there was no medical reason I couldn't drive & the eye clinic to write to her to say my vision was ok & then she wrote to the DVLA saying I was fit to drive!! In the end it was the gp's opinion that mattered most to them & to be honest she was the least qualified in neuro stuff out of all of them. I got my licence back in Nov just in time for nath going full time at infant school. I did have 2 refresher lessons just tobe sure I was totally safe with one eye covered. I do find driving is much more tiring than it used to be & if I've hit the fatigue wall I don't drive.

Hi Stevieboy & welcome to BTG I was the same as you, thought I could defy the surgeons & be back to myself within months. Now I can visit the cinema with my son & thats about it. About 3 months post op I arranged the cinema, lunch & a shopping trip thinking I could do it al, Boy did I crash & burn & it took me a whole week to recover. Now I plan short trips, don't visit the shops because the noise, light & movement tire me out like nothing else! I too avoid social occasions although I do try to visit friends once a week, we all had kids around the same time but now there are 12 of them plus us 5 adults & it can be too much too. Are you in the US or UK? if you are in the UK try & see if you have a local Headway to you. I thought I could cope on my own but Headway helped me enormously & would definately recommend seeing them. If you are from the US is there any way you could see a counsellor to help you work through your feelings? Like the others say you have done hugely well to be back at work within 4 months but perhaps that is part of the problem as we really do need quiet time to heal, perhaps you went back before you were really ready? Not that I can talk or offer advice on work as I am not working 3 years out:crazy: Take care

Hi Liz & welcome to BTG You will find there are plateaus in recovery & it can be frustrating as you want to push on & be as well as you were before the anni. If you look back to my posts at the 3 months stage I was planning a trip tothe cinema, lunch & shopping with my boy!! I was convince I could do it but everyone who pm'd me said I was trying to go too fast!! I remember the huge crash & burn just after lunch & then having to walk to meet hubby in the card (stuck in stationary traffic) nearly finished me off. I did the same in Sept when my boy started school thinking I could walk him there & back but my energy levels just weren't up to it. It is hard not want to be more better & energetic but it will come, you still need to rest though otherwise the crash & burn will really hit hard. Its best to set small targets & build up to big things gradually. Hugs to you cos I know how 'its early days' used to make me scream with frustration but now I can see how true that is xxx

Oh heck David!! Glad you are ok now. I bent down to get something from a drawer in the kitchen & forgot the overhang of the worktop & clobbered my head as I got up. It was on the scar side too but apart from a dull headache & feeling very silly I was fine! For me its cos I can't measure distances too well cos of only having single vision. In winter ice is a huge enemy for me, jsut the thought of slipping & banging my head terrifies me

I did, forgot that I did but I used to get a metallice or salty kind of taste but its gone now