I had a SAH I'm 32 its turned my life upside downing struggling to accept what's happened to me. I have two children I now can't tak

I had a SAH on the 4/1/13 I had it coiled I'm suffering from headache,moods,tears,tiredness I'm also feeling sick every few days I've got a rash on my stomach which has been there a week an a red patchy rash keeps coming on my face I wondered if this is normal or if any one else has suffered with this?

46 Replies

  • Hello yes I'm out of hospital. I stayed with my dad for a week or so b4 I came home. It's just me an the kids but my nan an dad come every day an I have a good friend. I'm struggling to accept what's happened I no I'm lucky to be here an I'm alot better than I was. I'm a bit forgetful but they said it affects ur memory an struggle to get the right word out which makes me feel silly sometimes. How was the first few months for u? And do u have any problems now?

  • O.K. As i say,a month is really early days .At this stage I was still recoverig in hospital

    so I'm not at all surprised that you're struggling . I can't emphasise enough that this is such a short space of time for recovery. I was incredibly tired for the first 2 to 3 months

    and this is absolutely normal. Headaches (quite bad) are widely reported and they've been a problem for me. The nausea was also a problem until quite recently.

    It's understandable that you'll have low moods......I think it's a like post traumatic stress

    .......it's a big shock to the system.....hard to get you head around also.

    The rashes don't sound at all familiar.

    I do think you might benefit from some professional reassurance. Did a specialist nurse

    not give you her contact details when you were discharged? Otherwise use your GP

    for advice if you're worried.....that's what they're there for.

    What you are experiencing sounds normal, but it is a lengthy recovery period. It was a wise move to join this site, you only have to ask and people will respond.

    I am basically OK now. You will be too. Im afraid it's a game of patience.

    Keep writing. Speak soon. Best wishes, xx

  • Thank u. I've ordered a book aswell a dented image journeys of recovery from subarachnoid hemorrhage so I can hopefully get a better understanding. And speaking to u as I've not heard of other people's stories. I'm going to ring my nurse from addenbrookes today an go to gp as I has rash on my chest this morning and my mouth is sore. Think I'm also finding it hard cause I've never been ill an dependent on people. Like u say it's early days thank u again. Xx

  • Natalie, It seems like very early days......when were you discharged from hospital?.......Are you at home?.......if so, is there another adult with you?

    I had a SAH a year ago. Please reply.

  • Natalie it is very early days for you I had my SAH 16.01.12, I had the headache & sickness for about 6 months. I was told by my consultant in October I was suffering from post traumatic stress disorder, I was not surprised has there is not enough support for SAH. I did not feel I could go to see my GP every time I felt a bit different. With time things do get better and you do learn to cope but life is different, patience and time is crucial. I'm now back at work part time which is a positive, I still get tired but I try to balance my days.

    Keep writing best wishes. Terry xx

  • hello terry, yes ur right about support I've felt a bit lost since I've been home as I'm struggling to understand this my friend found this Site for me which I'm glad as I can hear other people's stories. How long did it take u to get back to work? I was at work when it happened to me. I'm now trying to apply for a benefit an I'm getting no help when I ring them they tell me they can't help! Did u have more days when u felt down than happy? Xx

  • Hi Natalie, Ihad a SAH and craniotomy back in 2010 and my worlds still not right.So yes these are very early days and I`m appalled that you were allowed to come home to your kids without there being another adult with you 24/7. As far as benefits are concerned you`ll only get SSPfrom your employer for 6 months then you can claim ESA and possibly DLA but if your consentration and understanding are anything like mine then you`ll need help with the forms.Try the CAB or age concern they deal with people with ABI`S and all ages,not just older people.You are a survivor of this terrible thing so please take it easy and dont push yourself its to early.Good luck xx

  • Hello god that is along time what's a craniotomy? My dad my me stay with him for nearly 2weeks cause I was still tired an sleeping alot an had no energy I wouldn't of coped I don't think if I'd of come straight home. It was scary leaving hospital an issue didn't really understand what change in feelings I was going through because of what had happened. I worked 5days a week I was always busy doing my own thing I'd never been in hospital its all such a shock to the system very hard to accept havin a bath and hair wash is hard work now it makes me tired. Id just started that job the day it happened so wasn't actually employed :-( I'd left my other job for a supermarket a couple of weeks before as it was giving me back an neck problems. Yes I'm the same filling out the Esa form was a nightmare it made me angry, made me cry, made me feel stupid an took a couple of weeks to fill out sent it off yesterday. Im going to rest and take it easy I don't want to risk my health and go through any thing like that again. U take care aswell xx

  • Hello Natalie this tim last year I was still in hospital in Hdu, my SAH also happened at work. It was a Monday morning off to work for a busy week, I felt fine when I left the house, sat a work having a coffee and whoosh I suddenly had what I thought was a migraine, after a while l know this was not the normal type of migraine, I was hot felt sick, felt so unwell I was embarrassed at having to say I need a doctor. I can remember this is not happening to me. Anyway to cut a long story short I spent six weeks in hospital in various wards, I came out of the hospital at 8 at night in a wheel chair unable to walk or write my name. I then spend the next month in the day time resting and reading. When to see my GP for the first time at the end of march for a doctors note, requested for by my employer. My Gp said that I was a very lucky lady to have survived this was a great shock to me. From there I went down hill big time. Shocked frightened crying, sadness, this was not me, family & friends tried to help by saying nice things. It's not them who was having to learn to walk, write etc, there was just nowhere to go to talk to somebody who might understand . This site was not around last year, I read a couple of books, one was called re booting my brain. It helped me to understand what had happened and the technical bits relating to SAH as there was no other help this seemed the way for me to understand. Then I started walking fell over a lot at first but I got through. Very tiring but I made it, in May we flew off to Spain not sure if this was a good decision but I got insurance and off we went. Back home and I had got use to the words take it slow, rest, tired, sleep, I would go a little walk every day then started doing a little bit around the house. By July I wanted to try to go back to work part time - my Gp would not sign me off so another two months at home. In August I started as a volunteer for headway and I loved it looked forward to every Friday. This was a place that people understood you, made you feel welcome. Spoke to my employer it was agreed that I would go back to work in September on a part tim basis then they changed there minds. I really felt depressed and unwanted when was things every going back to normal. The thing is you have to accept the changes life will be different . October came an back to work I went starting at 18 hours working up to 24. Work is another story......but hey I'm alive. I still have bad days I only have to have a headache and I'm away thinking this is it will l have another SAH who knows.

    Every one says it's early days but l do get more good days than bad and you will too. Keep in touch keep your chin up. Xx

  • Hello, that must of been really hard for you I can't begin to think how u must of felt not being able to walk. There was a lady in the bed opposite me in hospital that couldn't move her legs had no feeling at all. I was cleaning a ladies house I was the same as u woke up fine started with a bit of neck ache an feeling sick half hour or so later I was being sick in her loo with head pain like I've never felt before an next I woke up on floor my speech was slurry, I couldn't get up off floor cause my legs wouldn't work, my breathing was weird an i was so cold then I remembered nothing for days it seems. I will order that book aswell to help me understand it all. I'm glad ur on the road to recovery. It's scary how many people don't make it isn't it! I keep getting. A nervous feeling probably normal after what's happened. My tongue is really sore with ulcers which is the stress and anxiety doc said. Although the hospital were really good I left there with out understanding what happened they told me my feelings and moods would be all over an somethings I've forgotten this Site has been really helpful xx

  • Hi, I had my SAH almost a year ago at 39 and the early days are very hard.It does get better but you really have to turn your pace right down to tortoise and be very gentle with yourself. Accept all offers of help , like to do washing etc and ask people who have offered previously. They like to do something , trust me.Those headaches are all encompassing and its really hard when you have young children which i also do. Talk to them and explain that mummy needs to be slower right now and set some rules about noise etc. go to bed when they go to bed, i did for ages and let slip the suff that doesnt matter. I would check out a rash but it could be a delayed drug reaction? Behind The Grey is also a fab place to share concerns as its all SAHers.

    I have blogged a bit over the last few months about how I have felt since having a SAH and subsequently having a shunt placed and dealing with all this change, its helped me not bottle things up. popgoestifty.blogspot.co.uk... .

    Take every day as it comes and little by little confidence and hope returns. Stay well.

  • Hello, my nan is helping me out a great deal she does the school runs an my 15 year old an her do some house work. My son is 5 an has been very. Brave an is being quiet so I'm lucky I have help. The rash an sickness started. The first. Time last week an they thought it was the meptid so stopped taking it but the rash has stayed since then it goes down an flares up I will see doc today don't feel to well an glans are up on my neck. Did u get sick feelings? I had a look at behind the Grey thank u. Are u all back to normal now? X

  • Hey, I am heading towards a new kind of normal I suppose. I wouldnt say that I am back to where I was before both physically and mentally. I have accepted what's happened to me (most days) and I'm working on increasing my stamina but slowly. Back to work soon but slowly I hope. I was dreadfully sick and dizzy for quite a while but I did have the hydrocephalus as well which was also adding to those symptoms.

    Brilliant your oldest is helping out, hope he's able to talk about it with you, he probaby still needs cuddles, your youngest will probably adapt the easiest! Super that your Gran is there to help as you will need plenty of support, don't turn down any of those offers of help. X

  • I've seen alot of people not getting back to work until a year after I was thinking (hoping) I'd be back to normal in 6 months back to work an driving. Do u drive? Glad ur getting back to ur self a little must be a relief for u an ur family. Hydrocephalus is the liquid on the brain isn't it? They were measuring that in my urine in hospital. X

  • Hello, reading your experience had brought back my own; and please know that your frustration with yourself is so unfair to you. You will be vague, forgetful and even though you probably don't look any different, you will need to accept that you are; and that you need time to breathe and relax and not to worry about anything you can do nothing about. You will improve without you noticing. You will look back every few months and be able to see the difference. Remember to take a break consistantly, it really helps.

    I found my local GP's ok in some respects but they are not specialists in this field. I don't know if "The Star Project" is still running or in your area, but I found them very useful to help with pacing myself and changing my expectations. It is still too early for you to see the wood for the trees. Hang in there, it will get better.

  • Hello, I look ill still my under my eyes really still dark my skin is pale an very dry. My eyes look different they don't look like mine did u get that? My memory isn't good I hid my son's bday present last week a tablet in a box an account charter in a box I couldn't find the charger for 5 days! It was in the draw but I didn't see it happening have it drove me mad tho. It's strange havin no energy an being tired I worked 5 days a week rushing around now I'm like this can't drive or do much really but I know I will get better x

  • Hi again Natalie. Yes,I know what you're saying about the eyes, I was shocked when I first saw myself after the SAH but your body can't go through such a traumatic event without it showing afterwards. You are still healing, but in a few weeks you will hopefully have the hang of ignoring chores that aren't important and resting whenever you can. Your appearance will improve & get back to normal when you stop adding extra demands.

    As I said earlier, I'm more or less back to normal after a year but my short term memory is still a nuisance and the tiredness can still be a problem. We all heal at different rates and so stories will differ but anyone will tell you that SLOWER and CALMER is something you need to keep telling yourself !

    Take care x

  • PS I was driving again after 3 months ! x

  • Wow that's quick back to driving..11 months on and im waiting to hear , still hopefully dvla will respond with a yes soon. So fed up now

  • Crocus, It isn't actually DVLA's decision. If your consultant considers you fit to resume driving it is up to him...so long as you inform them and supply his name etc.

    Best wishes x

  • The Dvla said that to me it's ur consultant I'm sure my consultant told me I couldn't drive for 6 months hope I remembered it right cause I will be gutted if he tells me at my 3 month check I can drive an it told the Dvla 6 be just my luck aswell! Xx

  • I have slowed down again last week I had docs on 3 different day an then thought I was fit enough for shopping the 4th it was too much time the shopping I got all shaky an had to finish it think all that made my moods worse over the weekend. I'm in an resting this week. Did u have coiling or clipped? Most mine was coiled. The consultant told me I couldn't drive for 6 months :-( xx

  • Glad you're slowing things down and seeking help. What's the doc said? Do you know what grade your SAH was? I'm astonished you were even thinking about shopping after one month....I was still in HDU at that stage....what hospital was this?

    In answer to your query, I had a coil. I was initially told I probably wouldn't be allowed to drive for at least 6 months but on my first check up ,3 months later, the consultant said "Go home and start your car, you're fine" So I apparently had a swift recovery. I suspect you can too if you behave yourself, but everyone heals at their own rate....It's

    a wait and see situation

    Eileen x

  • Hello sorry been to sleep an then docs at 5. I don't no what grade it was 3mm an in a awkward position, I was in addenbrookes to be honest I know I wasn't ready but want to buy my son's birthday cake an bits after not being with him a month but it was to much an issue know now I've got to rest. Docs gave me a cream for rash said it could be a eczema from the stress my body has gone through but if it hasn't gone in a week I will need blood tests performed. I've surrendered my license that made me cry I only passed my test last Aug lol. thank u Eileen talking to u has helped xx

  • hi natalie i had sah 6 mnths ago ive ad a lot of help frm family but aftr bout a mnth i gt realy depressed n thght id ave to rely on thm forever at the momnt im realy tired but thts cos ive overdone it the past few days.i stil have epelectic fits but nt realy bad ones, it does get better honestly even thgh its hard to beleive in the beginning, hope u recover soon take care.

  • Hello, it's hard getting ur head round the fact u can't do it an need help all the time isn't it, I felt like I was being babysat at first but I need the help I see that now. I get quite moody an tearful when I think about it or something I do makes me tired like having a bath and hair wash that wipes me out most of the time. Will the fits stop? I had a fit when it happened at work an wet myself that embarrassed me when I was told. Thank u for answering an hope u have a quick recovery x

  • hi i had 3 fits while i was in hospital. and thn another 3 since then.i saw my specialist in december n he told me to take the tabs till june.then if i dnt ave another fit i can come off the tabs .so far so good. i try nt to think about whats happend to me as it makes me cry .hope your recovery is quick.x

  • Hope they have stopped for u then! It makes me cry aswell an issue feel nervous alot of the time. Have u watched that brain doctor on bbc2 I think that makes me cry not sure if I should watch it xx

  • hi nat hope u feeling alright.i havnt watched it i mean to thn frgt its onxx

  • Hi I didn't have SAH, but a bad TBI , however I am 32 & have 2 small children & know how horendiously difficult & draining simple things are. A great charity that helped me out with a volunteer who came once a week to help me with my girls was called HOMESTART, they might be able to help you? It still sounds like early days, it's been nearly a year for me and although things are easier I still struggle. Good luck x

  • Hello what's a TBI? I will look them up thank u. It is hard when u have children it was 2 weeks before I see my children from the day it happened an heart breaking when they leave isn't it. Yes it's early days I've got a long road ahead this Site has helped me a bit talking to people that's in the same boat. Hope things get better for u xx

  • Sorry TBI is Traumatic Brain Injury, I had a serious car accident. I was in hospital for 6 weeks but not really conscious for 3 weeks so my other half didn't bring them in to see me until I was more coherent. I had post traumatic amnesia and by far the worst moment for me was one night waking up and not remembering my eldest daughter's name. I was desperately looking at my wrists and arms to find a tattoo that might give me a clue, my reasoning at that point was very disjointed at this point and I think I was remembering that friend's of mine had their children's name tattooed on their wrists. It still makes me feel sick now! I hated saying goodbye to them in hospital. It will get easier, accept any help you are given. My friends really stepped up and were amazing. Good luck.

  • That must of been awful for u all hope ur on the mend now must of been really scary! Funny how ur mind plays tricks making u think something is there. I'm getting help an resting

  • P

    Hi Natalie32, yes it is very early days, but you are obviously doing really well to even be out of hospital already. Just take things slowly, your children will just be happy that you are home. They may not fully understand what has happened and the severity of it but they have got their mum. My Mum is Cat1 (Eileen) and I cannot believe how amazing she has done after seeing her in HDU at the time. I know she has some issues still and I am sure she plays them down a bit but considering how it might have been her recovery has been pretty good. I am a mum too so I totally understand how you must feel, not having the energy etc but take it easy. Are you still under a consultant? Mum didn't think she would be able to drive for some time but he gave her the go ahead after 3 months. Have you had to surrender your licence as a result of fits? X

  • Hello, my children have been good my daughter is helping round the house and dinners I'm cooking aswell but she finishes it off for me. My son is a mummies boy an is very good an helps me. Bet ur glad ur mum is getting back to normal its a horrible experience. Yes I'm going back to see my consultant in a couple of months. No not cause of fits just cause of what's happened I was gutted about driving but now I'm home I know by the way I feel I'm not able to drive x

  • It's pretty late so you wont get this 'til tomorrow but i've been wondering about your driving licence. You surrendered it to DVLA? I didn't do anything with mine. The hospital staff told me to inform DVLA that I was (at that time) unfit to drive owing to a SAH, which I did. 3 months later when my consultant said I was ok to drive again , I simply phoned the DVLA telling them the name of my consultant and that I was now ok to drive. I did query this with DVLA and they replied that it wasn't their decision....it was up to the doctor in charge. It's just worth knowing because when you are ready to drive again you could wait longer than necessay if you leave it to them. Ask your consultant to tell you when he thinks you are ready. I felt such a sense of freedom when I got back on the road.

    However, you have to let yourself heal for a while longer yet but It's another thing to aim for.

    Regards, Eileen x

  • Morning, yes I had to surrender it I rang the Dvla an the man on the phone told me I had to surrender my license the consultant told me I wouldn't be able to drive for 6 months. In 3 months I have to get the paper work to re apply because it can take upto 3 months to get it back. It would be great if I'm told I'm better at my 3 month check but I will be disappointed if they tell me I can drive an it takes 3 months to get my license back be just my luck have ha ha xx

  • Experiencing a SAH can prohibit you from driving for 6months according to dvla guidelines but it does depend if you had a drain fitted or coiling or clipping at the time I think. Normally you are asked to fill a health questionnaire to apply for it back and they verify with consultant or doctor before making a decision. It sounds like you got lucky Cat and got an understanding call operator! I applied two months ago and I'm still chasing so applying at three months mark sounds wise Natalie.

  • Thank u for checking in will start it all in 3 months

  • my social worker reported me for driving after my nut bashing she said it was law to report

    i was not happy

    any road as i know it dvla are bovered about blackouts an thats it realy

    i kept my licence

    they sent me to docs for tests as i told them i was getting pissed all time

    any ways i passed all tests as was not pissed wen went to docs

    that was that

    nar thats not strictly true wat happen was i wrote a letter to dvla saying

    dear dvla

    i am not a nut jocky with phycotic tendenceys i have been probed an tested to the best of your abilitys and now that i have passed all tests that you can think of so, whats next

    and there reply was

    dear mister [ we dont care who you are]

    it has become aparent that you are magic for driving

    crack on lad happy days

  • If ur always pissed u shouldn't be driving risking people's life's


    was getting drunk at night cause not sleeping for months

    drunk driving nar

  • leeleelee, I love your humour and way with words x

  • Hi- your rash could be an 'Allergic' -in quotes, I'll explain that later- reaction. No you have not just become allergic to something you will always have been, it is just that your body has been able to cope with it so you have had no obvious symptoms. Any stress accident, bereavement even moving house can be enough to tip the balance so your body loses the upper hand and symptoms show.

    Not an allergy that will show up in blood tests rather an intolerance.

    It might be a lot to ask right now trying to deal wiyh it, but it could be a food intolerance such as milk&cheese&butter&whey etc etc making your skin extra sensitive. Rather than cut this out (the only really sure way) you could look at detergent and makeup and synthetic materials next to skin.

    Do you suffer with other things that might point to it being an allergic reaction such as easy bruising, varicose veins or had excema or asthma as a child? Anyway all my best wishes with this

  • Hello, I used to get mild eczema, I've had alot of stress with a couple of family members which I believe made my headache worse. Since I've had the SAH an been home evey day I have bread every day which I didn't before as it makes me feel bloated so it could be any of them then be interesting to find out which as I still have the patches on my face they do get worse when I get stressed thinking about it x

  • it is early days and its time for us all im still trying to cope since 2010ihad op was in every ward i think they were nice in walton but i no i was awake but rember even why they not let me walk thinking why then bringing things 2 hold its scarey even now as i didnt no what was rong still dont get most now, im scared as my useless arm hand keeps jerking up down backward forward i carnt say oh ill do it or stop it it does it as when, please if your near a headway they can help im not close to a center on ly phone but you only just been threw it and its scarey and i seen about esa thing i had give it advocate and cabthe ? are trickswhy they want trick realy ill people is crewal enough that ask help when as you like id wish id found more help before take care get better

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