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Hi I suffered a SAH on  20th May. I've been discharged from hospital just over 3 weeks now and so glad I've found this site.

The thing I've noticed about SAH is the lack of info about what you could be experiencing and no-one professional to ask is this normal how I'm feeling etc.

i think I've done really well considering some of the stories I've read, but there's one thing I'm hoping someone can answer.

 

Ive not had too many headaches but I'm walking around from the minute I get up as if I'm permanently drunk which is affecting my balance, I would like to point out that I do wear hearing aids and when I was well enough to wear them I noticed my right ear seems to be affected but not seen any consultants to ask a question.

 

My doctor said wait before seeing my audiologist in case of swelling.

Is this a normal reaction and if so does it correct itself, I am aware it's early days yet!

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Hi,

 

Welcome to BTG!

 

There's no easy answer to this.  The fact is, there are many variations on the after effects of SAH.  This does include slurred speech and balance problems.  I suffered with both in the early days.  I am over six years out now and I still have the odd balance problem but it is hardly noticeable now.  My speech is fine.

 

It is early days for you and it probably will settle a bit over time, but you should stay in touch with your doctors and take professional advice from them if your problems persist.  Your brain is a complex organ and it recovers in its own time, not just when you want it to.

 

A SAH is a serious event and you should not underestimate its effects.  Keep monitoring your progress but give it some time to repair itself.  In the meantime try not to worry too much.

 

Keep reading aloud to yourself from newspapers or magazines to try and improve your speech, but only in short bursts.  Don't try to do too much too soon.  Use a walking stick if you need to and always use the handrails on stairs and get someone to accompany you if you need to.

 

Good luck, let us know how you get on.

 

Macca

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Hi as Macca says it really is early days for you. At your stage I too had poor balance and wobbled around like a 'weeble' sometimes. It will get better but if you are worried try speaking to a nurse specialist where you were treated if they have one. 

I do remember having problems with one of my ears which I had looked at by a doctor. It was all ok and settled in time, I think it was all  just part if the healing process.  

 

Take things slowly, rest, sleep and drink plenty of water. Hopefully given time things will improve and you will reach your new normal. 

 

Keep us posted. 

 

Clare xx 

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Hi Clare and Macca thanks for your feedback I have spoke to my specialist nurse, unfortunately they only work part time so my phone call as only been answered nearly 6 days later. They have emailed the doctor but seem to think nothing is serious and will improve over time. Will let you know if anything comes back from the doctor.

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Hi,

 

Yes the lack of information available about SAH is very noticeable and frustrating at times. My SAH was in March and I've personally found it really useful looking over a lot of the old discussions on here.

 

Some really good advice given to me when I first came on here was to make sure you don't become dehydrated, I've noticed my bad days tend to be the days I've forgotten to drink enough.

 

Kay

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Yes Kay I picked up on that after stopping my medication that insisted I drank an average of 3 litres a day but said could return to normal liquid consumption afterwards so I've upped the quota but early days yet to see if it makes a difference.

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Hi welcome to btg. I had my sah on the 23rd of Jan. It left me with left side weakness and my balance is bad - it as improved a little but I still have a long way to Go.

 

Good luck in your recovery.  The  people on btg have helped me loads xx

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We will get there eventually Elaine and it is a long haul.

 

We get good days and bad days, today was my bad day (misery Win ) lol

 

But we get more good days than bad the longer we keep going.

 

Take care and try not to stress  as it is bad for you xx

 

All the Best

Win xxxxxxxxxxxxx

 

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Update on my consultation.

Seen consultant yesterday and he's very very happy with my recovery.

 

The dizziness is due to hydrocephalus and hopefully the fluid will disperse over time and as it's early days feels putting a shunt in will do more harm than good.

As for my hearing my right side has been badly affected and is as bad as my left now but again consultant says this too will improve with time so although I've had my hearing aids adjusted they may need to be re-adjusted over time.

 

All in all it's positive news and I need to be more patient regarding my recovery.

Thanks to you all that's replied, unfortunately they were going in my junk mail.

 

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Hello, many thanks for your update.

 

So pleased that you are feeling positive following your meeting with your consultant.

 

As ever with SAH recovery.      Patience and time..........:)

 

Good news.

 

 

Subs

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Hi Elaine, welcome don't think I've said that to you just saw this post..

 

all seems to be going well for you, it takes time...

 

 

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Hi Elaine,

 

Docs words make sense.  If your hydrocephalus is producing more spinal fluid then your body has more to absorb, I guess, so hopefully over time, albeit a slow process, you will begin to improve.  So the fluid trend is downward and therefore your health is on the upward!  Keep monitoring how you feel and if there is anything out of the ordinary, get back to your doctors, pronto.  Don't wait to see 'if it will go away.'

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Hi Elaine, you must have had an extra ventricular drain placed then when you were in hospital which would have managed the fluid if you presented with hydrocephalus as well. The hydrocephalus adds a complication in that it places vice like pressure across the entire surface of the brain so there is added injury from that as well as injury from the bleed.

 

Hydrocephalus is when the brain ventricles are damaged ( or blocked temporarily by the blood) and cannot absorb the daily production of cerebral spinal fluid. Sometimes after placing an EVD that is enough to correct it, some people also have multiple lumber punctures as well in addition in the hope the ventricles fully recover and some require a shunt to be placed immediately as theirs are too damaged and don't work or later as I did when it was apparent mine would not ever absorb enough to prevent the hydrocephalus recurring.

 

If you had that post bleed but no shunt fitted then please do stay aware of any changes or deterioration in your condition. An increase of pressure will affect balance, speech, and feel like a shutting down of sensations, you may feel cold and memory recall will become even worse, Do not ignore that and get yourself to a hospital and get scanned .

 

Im not saying that to scare or upset you but just that no one told me that could happen post my discharge so when I went in to see my GP with all my symptoms getting worse he packed me off to hospital telling me that was what was going on and it was. he hoped an LP would trigger them to work better for me  but mine didn't play ball so I ended up back in hospital 3.5 months later for more LPs and then had my shunt. It is unlikely that you would need that but as Macca says, 'don't wait for it to go away' or pass, get it looked at and that means a scan. 

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Hi Elaine,

 

What others have already put,  as I have a shunt in but before the shunt I was asleep and remember nothing.

 

OT's were trying to make me do exercises and I just cried when they came near me as my hydrocephalus was bad !! 

 

When you get out of bed do everything slower than before bleed, I was told to sit up then wait, then swing legs out of bed and keep still. 

I do not feel as giddy when I do this,  but when I jump out of bed I do go giddy still we have to take it slower after a bleed.

 

Now you keep getting better and have more good days  xxxx

 

Love

Win xxxx  (I put jump out of bed but me and jump do not go ha ha) xxxx

 

 

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Hello Elaine and I echo everyone else's responses - welcome to the club and to a whole new life. And well done on getting this far and getting on with your recovery. It's a real achievement, believe me.

 

Hydrocephalus is quite a challenge, because it's literally a fluid situation. After my SAH in June 2015, I had  a Lateral Ventricular shunt inserted internally in my brain that drains into my abdominal cavity. I also have a misbehaving fourth ventricle which has already got isolated once, been operated on last December, and is now looking like it needs intervention again.

 

The thing I've discovered about hydrocephalus is that every day is different. it just depends on how much the ventricles are filled with CSF, whether the shunt is operating properly, if there is intermittent blocking of the tube or of the apertures at the base of the fourth ventricle or the aqueduct back up to the other ventricles. I just see the 4 ventricles as tanks of fluid circulating and draining properly or badly depending on whether there are any little bits of protein floating around blocking things, or whether the 'pump' draining them  (the shunt) is flowing well, So some days the head is squeezed and pressured, other days it's heavy and full and only occasionally there is no sense of pressure or pain. 

 

But it is possible to get on with life by distracting yourself, staying really chilled, and doing only one big thing each day.

 

The other thing I've discovered is that as hydrocephalus increases (the CSF increases in the ventricles), so does dizziness, pressure, poor speech, nausea and fatigue. If the fourth ventricle, near the brain stem, is too dilated, it puts pressure on a node in the cerebellum that 'speaks' to the vestibular system and the vagus nerve, and the dizziness, poor balance and nausea just gets too much. I've been taken to Emergency four times by ambulance and once by car. So it is really important to keep  a close eye on symptoms and be ready.

 

But three or four times it has subsided and it's back to normal :-)

 

Time is absolutely the best healer, so just progress in half-hour increments, smell the roses, and embrace every enjoyable moment possible.

 

Take care xx

 

Cassandra

 

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Thanks Cassandra for your input,

Until this happens to you, you don't realise how many people are affected.

I am realising just how lucky I've been to be relatively unscathed.

Still early days, went out yesterday with husband for 6 hours and now I'm suffering the consequences, not feeling very good today, so, yes a little at a time.

cheers 

Elaine

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Hi All,

Well it's been nearly 2 months since last posting and nearly 4 months post sah.

I felt quite positive after seeing consultant regarding my dizziness in July but my symptoms don't seem to be improving much.

Some days I feel like it's going away and then I start feeling  poorly, more dizzy, then it's like that for days.

 

Gradually I return to reasonably good health and then it all happens again.

Getting myself upset thinking that it's never going to improve.

Am I still expecting too much too soon?

 

When the consultant said he expected Hydrocephalus to go away in time I should have asked roughly what sort of timescale he was thinking it would be.

I do have a follow up appointment at end of October but he thought I wouldn't need it.

I am getting worried that I may need a shunt and that will mean I won't get my car licence back, which means I won't be able to go back to work.

 

Cheers

 

Elaine

 

 

 

 

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Hi Elaine

 

sorry to hear you still aren't feeling as well as you hoped. 

 

Maybe it it would be worthwhile giving the hospital where you are going for follow up a ring and ask them about your symptoms. At least it would put your mind at rest. 

4 months is still early days though so try not to stress too much. Make sure you get plenty of rest and keep drinking lots of water. 

 

Good luck

 

Clare xx 

 

 

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Elaine, 

 

Try not to Stress as my Surgeon said it is bad for us, I might have told you this already, I had no option but to have a shunt put in after getting Ventriculitis.

 

You will get better and if you feel stressed, keep calm and remain happy.  Easier said than done.  I have ways of making myself happy I go back years and think of times I laughed until I

cried with hysterics.  Also I sing happy songs annoys the Hubby but keeps me stress free and then we both laugh ( albeit 1 am in the morning) !! 

 

See smiling at what I typed  xxx 

 

Good luck with your recovery and stay happy when possible xxxx  Never give up xxx 

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