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Hi All, have been stalking you for years but this is my first post.

 

I had my "no cause" SAH six years ago this week and like some others immediately following sex with my husband not that others actually had sex with MY husband, but you get my drift.

 

I feel so lucky to have walked away from it as well as I am but sometimes, like this fortnight, when I seem to be unwell regardless of what I do it gets on top of me.  The doctors here in Australia offer no support or advice beyond be grateful I am alive and not worse off.  This is true but come on ??

 

So does this sound like anyone else ?  Weird head, not exactly a headache but sort of with pressure thrown in.  Difficulty concentrating. Easily overtired.  Ringing in ears.  Nausea.  Loss of balance.  Blue flashing lights in eyes.  Mixing up words.  And tonight for the first time in six years kaleidoscopes in eyes.

 

All this means I can only work about 15 hrs per week.  Don't drive much, never on a work day at night or long distance.  And have a sleeping routine of a baby.....get plenty and NO late nights.  I take a variety of codine based medications to attempt to keep it at bay.

 

My only almost guarantee of being well for any period of time is holdiays so no stress, no work and no arguing with husband.

 

Thoughts fellow SAH'ers ???

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Hi Trace Welcome to BTG, six years that's a lot of time stalking! Like you I feel lucky to have walked away from my nasah with no major deficits but find it very difficult trying to explain to people how my life has changed. Its almost as if they are thinking OK you are 18 months on, look well, work ok and exercise so what are you complaining about?

 

Memory? Well we are all getting older and memory goes with age.But my memory is different now and I dont think it would deteriorated that much in 18 months just through ageing. I too suffer from fatigue and the weird head if things are getting too much, pressure and neck-ache.

 

I find a couple of paracetamol usually help. Codeine based products are notoriously addictive so it may be worth having a chat with your GP regarding their use and alternatives. The kaleidoscope in eyes I have had a couple of times both pre and post nasah, my optician put it down to optical migraines, but once again get it checked out - your eyes are important!

 

I think its very difficult for people to accept that we who have suffered this insult to our brains have long term side effects. My solace is that there is always someone here on BTG who will listen, comment and try and help. Six years is a long time to go without BTG, start making up for it now!

 

Clare xx

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A nurse friend of mine advised against taking any opiate based drug after a brain injury - I was on codeine and got rushed back into hospital with a suspected re-bleed - they swapped it to Tramadol which was worse and also opiate based.  Talk to your GP see if there is anything that is not an opiate based pain killer - don't just come off them though, follow your GPs advice.

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Hi Trace,

Since my SAH which is 7 years this July (I think) 2009.  In 2010 I woke up out of dreamlike state after having shunt put in and my Daughter found this site.

 

I get bad head when there is thundery weather about, Daffs gets it also, it is like a thick head and as if a thunderstorm is about to come over us.

We call it our barometer head xx

 

My surgeon said "no stress whatsoever"  so I have told my family not to tell me their problems it is hard on them as they like a good row lol.

 

So I suggest you remember only happy thoughts first thing in morning and go to bed with a silly thought, trouble is I start laughing and keep hubby awake.  

Still have trouble walking very far without pain in back, but I've come on leaps and remember a trouble shared etc  xxxx 

 

Love

Winb143 xx xx

 

 

 

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Hi Trace,

 

Welcome to BTG.  Lots of the things that trouble you sound very familiar and there's lots of good advice from the people above.

 

However the first thing, in my opinion, is that you have to accept that change has happened, it's how you deal with it that counts.

Second, you have to find a series of coping mechanisms to help you respond and adapt to that change.

 

I suggest the following only because they appear to relate to the problems you mention:

 

1  Headaches, get yourself checked out again, go back to where you were treated, not your local doctor (who will usually be less experienced at treating cases such as yours)

 

2  Go and see an optician with regard to your eye problems to check for any underlying sight problems

 

3  Think about investing in a quality pair of sunglasses, not so much to be responsive to the sunlight but to reduce glare, which can even happen on cloudy days (maybe reactolite types, for instance - discuss with optician?)

 

4  Break down your daily tasks into manageable chunks with regular breaks, particularly where concentration is required.

 

5  When you mix up words, stop, take a breather and try again.  If still faltering, try and say it a different way or write it down and read it out loud.

 

6  When you are over tired - rest - that is what your body is telling you to do, so listen to it.

 

7  When you have balance issues, use a walking stick, sit on a wall or a bench for a couple of minutes - that's what I do.

 

However, you have to find your own solutions by trial and error to find what works best for you.

 

One of the frustrating things about our condition is that although many things are the same type of problem, they are all different in terms of degree and the context within which they affect our daily lives and those around us.

 

Good luck

 

Macca

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Hi Trace, 

 

As Macca said if you have medical concerns get back to your specialist, but besides that you may also benefit from occupational therapy (OT) support (there are a number a threads around that touch on this).

 

OT wasn't quite what it thought it was pre my SAH 18 months ago. Its working with a specialist to help you manage the "deficits", issues whatever you want to call them that you have now post SAH. Sometimes nothing much will help and as you say, step back rest have a  holiday and keep it stress free is the best thing any of us can do.

 

But life sometimes requires a bit more of us, and for this an OT can help. You've done really well to get back to 15 hours a week, some folks never manage that much post bleed. 

 

Driving, don't get me started, this is one of my biggest achilles heels right now, I only drive locally and like you almost never at night.

 

Re the drugs, I agree with all that is said above, there are better things that have less complications that you can use to control the headaches. Your GP should be able to help you with this.

 

Good luck, glad you have posted, it's good to share it, and the folks here are all very supportive as you can see.

 

All the best

 

Greg.

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hi Trace

 

from you statement I believe you should be asking for a neurologist appointment and ask him or her to give you a full work over... my partner is eight years down the line and it took me to get someone to see what I had, in my partner and now things are moving forwards.

 

it could be nothing and everything has an explanation, but for your peace of mind I would suggest getting an appointment sooner, rather than later.  write everything down so when you see the neurologist he can request tests and the results should settle your worries. good luck paul

 

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Hi Trace,

 

I am sorry to hear that you are struggling so much for so long.  I don't have much advice as I have been extremely lucky so far since my NASAH.  Other than the occasional headache and some memory problems, I seem to be ok.  But I can send you prayers and hope for things to improve.  The vision thing worries me as colored vision was the first symptom I experienced when I had my bleed.  I agree that a trip to an eye doctor may help. 

 

Thanks for posting after all of these years of stalking.  This site has great people who can offer advice and support. 

 

Chris

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Hi Trace. 

 

Welcome and well done for making the post, your thread will help someone else 'stalking' the site so well done for taking the plunge after all this time. 

 

Also so can I just say I laughed out loud at the hubby comment so thanks for the smile there.

 

to be honest I heard echoes in everything you said. Like you my world is paced differently these days but even then sometimes that still doesn't work and I get all that you describe and nothing I do matters a jot, it will still send me reeling, my worries raised and my pain level back to nearly intolerable. Weather can also knock me off kilter as Win shares with big barometer swings. 

 

That said I do agree with some of the caution shared on opiates and if you regularly use them it may be worth questioning and discussing other pain relief options with your GP as they can have unpleasant side effects. 

 

Macca  gives some great practical tips, all can really help you but making sure I'm always putting lots of tiny breaks of silence and doing nothing for those short breaks in my day I feel has helped me stretch what I can do little by little .

 

But we don't stretch as far or as easily as of old so maybe make life or pacing changesyk what you currently manage. Think about what you would like to do and what is bothering you most and concentrate on trying to improve or change that first, do one thing at a time though as we are hopeless multi taskers now. 

 

Tske care 

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Thank you everyone for such sharing, supportive messages.  Don't know why I stalked you all for so long.  Feeling mentally up after reading everything you all said.  

 

Not that it matters but I did my sums wrong, I have just celebrated 7 years since "my head tried to kill me".  I call it my "NAAA I'm not dead day!".  As you have probably gathered I survive on humor and scarcasm !

I have an eye specialist, I also have type 1 diabetes, but have never mentioned the effect my SAH has had on my eyes to him.  So thanks due to see him in September and will talk to him then.

 

It was actually my GP that put me onto the codine based meds but don't worry I try not to take them too often.  Generally only when things are that bad I cannot sleep for the assortment of things going on in my head/body.  Or if I am at work and have to keep at it.

 

Anyway enough babble from me.

 

Thanks all

 

Trace 

 

 

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Hi Trace, warm welcome

 

Humour is the best medicine if you cant laugh...

 

I'm like others go back to the docs if one meds not working there should be others, and or as for a referral back to your Nuro the sad truth is we get fobbed off but sometimes WE know ourselves...

Don't know if that makes sense..

 

I'd write stuff down when you go because WE do tend to forget write down how you feel and stuff...

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Trace,

When I first came out of hospital I was sure I was going to die as I am very dramatic,  so I sung all the songs I wanted at my Funeral ha and came on here and there where so many of us.  They cheered me up no end and I come on here when on a downer and need cheering up.

 

I used to post all over the place and my messages were like memo's ...poor Mods got me used to it after about a year lol xx

 

When I see a new member I want to run to them and tell them to post it will make us feel good. 

 

You will be fine but put mind at ease and if in doubt see Doc xx xx

Keep Well

Win xxxx

 

 

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  • 2 weeks later...

Hi,  I am 21 months post NASH and still struggling with many of the issues you have too Trace.  I can actually feel my brain all the time and it takes so little for it to become irritated.  It almost feels like it doesn't quite belong to me,  as if it's incompatible with the rest of me!

 

I keep looking for a pattern to feeling rubbish and it seems that stress and worry of any kind (especially work related) seem to have a fairly devastating effect on my poor frazzled brain. I am up to 21 hours working over 3 days, but I am finding this very hard and need to have a snooze when I get home. I think the worse part is when I'm having a period of sleeplessness as it's so hard to function especially when it's a work day.

 

It's so reassuring to know that others are experiencing similar issues and it's a great relief to know you're not alone. We are all very lucky to still be here but it's difficult for people to understand that although you look ok, all is far from being ok a lot of the time. 

 

I too am more of a reader but your post made me want to contribute my own wee story,  it's good to share! 

 

Take care and be kind to yourself. 

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Hi Everyone.

 

I am over three years and have some of the same symptoms.  Never feel quite right, always the heavy head, and God forbid it rains .  I hate the rain, it hurts my head.

 

I work every day but am so tired when I get home but do not rest.  I lose words all the time.  When I do sleep it is not soundly.  I am up several times per night.    It is what it is and I push forward and hopeful the next year will be better.

 

i

 

 

 

 

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Welcome Gillian,

 

Hope you find BTG a place to speak about our worries and to know we are all in the same boat.

 

It helped my Daughter and now it helps me,  seems to be a family thing in my house lol.

 

Take care and when on a downer come on here xx as it is a real help this site. Also your post helps others to know they aren't the only ones  xx

Good luck

Win xxxxxxx

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Hi all,

 

l am one of the members who comes and goes!  Great to see many old friends are still here after a period away.  As with us all we have to suffer as they say in silence, only when my brain feels it is going to burst and l can't go on do, l return to BTG, the one place where one does not feel nearly ashamed and guilty at not being able to cope, or one has to say no, l can't do it.  

 

I am now 4 yrs on,  it is getting better if l do not do too much, but when l get stressed, and family and friends find it hard to understand that l am not as l was, especially when they need a lot of physical help it is difficult.

 

It is very reassuring having read the previous posts above from everyone, how we all have the same problems with our brains. Nobody unless they have had a SAH knows how it feels, living with constant headaches are a bore, and constantly forgetting and confused is frustrating.

 

I have a great fear of going to the GP it took me a year to get my license back, and then l had do a driving and a number of written tests ,at my age 73 they would never give me my licence again.  I have also had to have special eye tests as there was damage to my eye.

 

So there we are,  l live in the Brecon Beacons, no bus.  I can still drive my pony but the shops are a long way to go!

 

Has any one else had any problems with DVLA and has their Dr ever mentioned driving when they have been about headaches and vision. Sorry to only appear when l am at the end of my tether, but school holidays etc!!

 

Love to all Jillx

 

 

 

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Me again Jill lol xxxx

 

My surgeon told me not to stress as it is bad for us, say it non stop as my Sis is really lovely but I had to tell her to stop telling me her tales of woe as I needed happy around me.  felt guilty but I used to cry after she rang me and off loaded her problems.

 

So I told her that my brain doesn't work like it used to I need happy and no problems, which she finds hard !! She is getting there though bless her.

 

Eyesight got worse but got stronger glasses.  Not changed them since.  wishing you good luck and it is good to hear from you again xx

Love

Win xxxxxx Make note Jill : keep away from others problems  xx if poss. ie turn off lol  xxxx

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Hello Jill

 

Thanks for coming back to share your feelings and concerns on BTG. All of us are here to help each other.

 

I am sure there is much you could tell us about your journey following your SAH four years ago. Out there on the Brecon Beacons you have lovely scenery along with the benefits and challenges of isolation  You certainly have that fighting spirit....continuing to deliver these triplet lambs as you experienced your SAH..

 

Daily physical work such as yours cannot be easy .....with very little let-up as it is your livelihood, and it is hard especially if friends and family don`t fully appreciate how debilitating living with SAH can be. Is a clear-the-air chat a possibility to get them on side ?

 

I am sure your GP will be very understanding were you to have a chat with him. When last did you see your consultant and have follow-up checks ?

 

Jill, I do hope you get the help you need.  Getting help may well not have the dreaded consequences of losing your driving licence.

 

Others on BTG will offer their support too.

 

Take care...and keep in touch.

 

 

 

Subs

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Hi all many thanks for your help.  Have now cut down to only 5 pet. Sheep, have had to adjust my life style as we all have to.  Feel really sorry for you younger SAH 'S how you cope with young children must be very challenging, just after 3 weeks of hyper active 4yr old and 6 year old has really taken its toll on my brain, by the end of each day my vision is really blurred.

 

 I do wonder what happens to our brains when we get stressed and and tired, one imagines that after 4 yrs the bleed would have healed along time ago, we all coped easily before our SAH

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Hey Jill, good to see you on here, glad to hear you are still managing the pony driving. Does being with the horses help when you have a SAH head? My daughters ride and I found just Spending time around horses in the early days really helped me to reduce anxiety and helped me learn to calm thoughts.

 

You and I are about the same I think in terms of how far on from our bleeds and during that time lots regained but we are still realising what has gone. It's always about the dance between acceptance and ambition.

 

'Im not sure the damage to our brains ever heals to be honest, that's just my view so only that we have had to adapt and learn a different way of getting to the outcome we hope for with this reconfigured device. Wins right, our ability to process emotional and high intensity is not the same for many of us and so we need to make allowance for that.

 

My girls are 10 and 13 now so were very young when it all happened but they have helped me to increase my stamina again for noise and disruption especially if friends come round but I'm not the mum I was and find a bundle of kids will exhaust me faster than anything.  If I'm honest I find holidays hard because there is little respite from demands and activity.

 

Mine are old enough now to understand I have to go off and have quiet time in the day during holidays if they want to have 'useful mum' so maybe that's something to adopt with the littles when they visit their Nannie , you could all practise some quieter moments in the day, bug hunts, drawing scenery, change your pace and teach them as well it doesn't have to be full throttle all the time. 

 

Take care Jill and go see that GP,of yours and be honest with him or her, failing that if you have worries maybe phone the nurse helpline of the brain and spine foundation ?

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Jill,

 

Mine happened in 2009 and I had 1 normal day and I know my brain is getting better as I don't get the hump as quickly as I did.

(Liar Win) lol not as much then !!!

 

Still get humpy days when I say why me. but I think about the man who used to make our sheet metal for us,  and he never made it after his SAH ...So I am sorry for him, but thankful I came back and  hugged my Daughter and we both cried.

 

Our brains are healing all the time okay we have down days but honestly we will get there, a new version of us but alive and well xx

Good  luck

 

Win xxxxxx (apart from my walking) !!! lol xxxxxx

 

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Hi all,

Have had a lovely few minutes reading your posts and seeing that others are feeling similar to me. I had my Perimesencephalic haemorrhage September 9th last year and I still have little issues.  

 

I feel so lucky to have not needed any surgery of any sort but I do still have the symptoms similar to most of you.  My neck aches for a number of reasons, tiredness, stress and possibly atmospheric pressure.  I loose words and I find I need to stop and wait until the words return.  I seem to stumble occasionally too.  All small things but things I know were definitely not happening before.  

 

I do get cross when I can't find words to carry on a sentence and others say, "oh, it is age, I forget things". I know what it is like to have those lapses of, "what am I doing in this room", but the way I have described how I feel to my husband is that when I can't find the words it feels more a physical loss than a momentary lapse, it feels like a total blank in my mind.  I have cut down phone calls as I feel awkward when speaking on the phone and find myself searching for words, I feel at least talking to someone face to face they can see me stop and take time for words to come together but on the phone I think they feel I have gone.

 

I am keeping a watch on my stumbling to one side.  I have further reviews later in the year and will mention it.  I need more MRI scans because the scan has shown an area of high activity in the cerebellum which they do not know why or what it is or whether it is something that has been part of me since birth.  Four MRIs done since my bleed and no change to the area so it could be fine, but it would be co-ordination that would be a sign of anything going wrong.  

 

I have to say I have increased my driving now and I have done lots of driving this summer.  I also have flown to Canada without any bother on my own but I relied heavily on my husband repack my case as I get wound up easily if things don't go quite right.

 

Sorry I have rambled on here.  It is so nice to speak to others who could understand the ongoing issues.  My consultant said most people never get back to being 100% but most to about 95%. I can deal with that.  I don't think he is so convinced about my head/neck ache when I mention it. He often writes down it could be wear and tear on the neck giving me pain, I don't think so!

 

Once again thanks for listening, thanks for being there, take care all of you, and listen to your body.

 

Irene x

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Hi Irene

 

Welcome to BTG.  You'll find lots of information and support here.  Most of us have suffered similar symptoms and after affects, so feel free to ask anything you like.  We can't give you medical advice or advise you on medications, but we all know what you're going through and how it affects you.

 

I'm nearly 10 years post SAH and I can say that I am one of the ones that is lucky enough to be 98% recovered.  I work full time in a busy school office as well as doing my husbands accounts - it takes time but things do improve.  I found that pushing myself a little further each time I reached a previous goal helped me get where I am today - it doesn't work for everyone but I didn't have any physical issues after my SAH, mine were all psychological and emotional.

 

Look forward to hearing more from you and your progress as your recovery continues x

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Hi,  

Thanks for responses.  It is nice to be able to speak to people who have gone through the same. 

Each day I feel I am doing more.  Still get tired, but I know each day I am improving.  I will keep 

popping in to read up on all the latest posts and any changes I can let you know. 

 

Irene xxx  

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