Sorry in advance

[jord38]

I'm really sorry for keep posting my depressing posts but have to pretend to be happy mummy in front of my children so need to offload somewhere and nobody understands like you guys. I seriously can't cope with this dizzy/spaced out/off balance feeling (its so hard to describe). Even when I'm lying down my legs feel floaty/off balance. It goes off for a couple of days but has been back with a vengeance for the last three. Does it sound normal? I am also getting stabbing pains in my head and eyes. I am always so scared that something bad is going to happen. I just feel like my life has been destroyed. Lisa xx

[Daffodil]

Lisa. Sorry it's a bad morning for you.

Pretending you're ok only works for a while. I m sure the feelings you are having are the strange neurological healing process , I think you said you've been scanned recently and theres nothing untoward going on , so try and take each new day as it comes.

iI'll share what I learned. Early on in my recovery I had days where I felt just like that. Every pain was exaggerated, every ache was magnified. I didn't think I was having another SAH but I did worry what was going on and wished it would stop. I felt awful.

But this recovery isn't like others ive had where you battle through it, you have to accept the rubbish days, the feeling awful and accept that they are part of getting better.

To deal with that thought I had to create ways to relax. I couldn't do what I normally did so i created New ways to wind down from my anxious state. I also explained to the kids that I couldn't do everything they or I wanted but that by doing little it should help me get better. Lisa it has. I am doing so much more these days and those dark days when I was intensively healing are less.

Usual advice, cry lots, drink more, sleep and do little bit by bit. Your amazing brain is trying its best to fix the damage. Be kind to yourself. You can't rush it, it won't let you.

[jord38]

Thanks Daff. I don't actually worry about another SAH when I'm feeling really ill, I worry about things happening as a result of the SAH. I really hate this off balance dizzy feeling because it affects my limbs as well as my head. I really hope one day I will become as positive as you and can just accept these feelings, although its doubtful because they scare me to death xx

[Winb143]

I get aches and pains also Jord, but like Daff said you need to learn to relax, easier said than done though with kids xx

Singing helps me but my family suffer when I sing, tough lol.

Try thinking happy thoughts like we have a 2nd chance, or look at kids and give them a big hug just for being them.

I cry, I laugh, I get sad/happy all gambits of emotions, is gambit a word ? (Yes Win it is).

Oh and I talk/type to myself, whats new !!

Cheer Up Jord xx

Love

[jord38]

I know you're both right and I need to relax but I can't, the dizzy/spinning feeling is so bad and my arms and legs feel so weak which is making me really anxious xx

[Winb143]

Jord,

I got and still get dizzy spells but not as bad, ask Doc if he can help with them.

They do go but try not to panic as you get into a circle of panic ,then dizzy and bad headaches then the sobs .

I should get awards for my sobbing lol .

Keep Happy,

Love

WinB143 xxxx

[Bev897056]

Hi lira reading your post sounds just like me I too am sick to death of this dizzy spaced Out feeling I feel as though I am in a dream from the moment I wake up its oviously neurological I go see a next week and it cant come soon enough. I think I have temprol lobe epelipsy cos thats where my bleed was either that or major major health anxiety but I know one thing this spaced out off balance is not normal and its a vicious circle it makes us worry more and more. I cant deal with it at all its xmas and yeah like you trying to put a brave face on it for my boy but I dont even feel like I am no this planet. How is this normal or is it our new normal? X x

[jord38]

Thanks Win, maybe I should sob a bit more, might make me feel a bit better lol xx. Bev its horrendous isn't it, I hope to god its not our new normal. I can't handle this feeling. Does it make your arms and legs feel really weak too? Xx

[Bev897056]

I havent had weak feelings in hands and legs but I get pins and needles I have them now my worst feeling is this unclear head like its blocked or something and when people talk I dont feel like I am here and my vision feels fuzzy and the dizzy off balanced feeling like a woozy feeling its difficult to describe! I swear it went off for a bit a while back but after sceizure its bang back big time which makes me wonder if its a mixture of the bleed stress anxiety just constant worry ! Do you think about whats happened from the moment you open your eyes ? I cant wait to get back to bed because my mind is just in a state of constant panic all day every day nothing takes my mind off of it cos something will happen like ill go dizzy or get a stabbing pain in my head and I think here we go its happening again and I picture being back in hospital. I wonder if its possible to drive yourself mad with worry? Its got to have some effects hasnt it. I have tried medication for fits and all they do is make me feel worse. I feel like I am in a black hole seriously I wish it would go away! X x

[Super Mario]

My spaced out, dizziness and balance problems are still with me nearly 9 years down the line. I have learnt coping strategies and use a walking frame all of the time, that is not to say I don't fall over, I do. I look as if I am drunk all of the time. Not really want you want to hear but on the other hand you may be one of those who will eventually recover. Just give it time, you are in the very early stages of recovery.

[jord38]

Bev, yes I think about it, or should say worry about it constantly, day in day out but I feel so rubbish everyday that its hard not too. It's like some kind of nightmare. I'm wishing time away in the hope that I'm still here and feeling a little more normal xx. Penny I really feel for you having this dizziness for all those years. Having read lots of posts on here I remember one about area of bleed and if it caused same symptoms. I'm sure I recall yours being the same as mine, left pcomm or something. I seriously hope I'm not stuck with these feelings xx

[Super Mario]

Penny I really feel for you having this dizziness for all those years. Having read lots of posts on here I remember one about area of bleed and if it caused same symptoms. I'm sure I recall yours being the same as mine, left pcomm or something. I seriously hope I'm not stuck with these feelings xx

Be positive, I am, I have learnt to cope and so will you if needs be. There are ways of doing things that alleviate some of the nausea involved with the dizziness. In spite of it I lead a full life and enjoy life. You may have gathered that I travel lots and on my own. May take me so much longer to do things but I do them.

Just give yourself time, not easy I know with kids to look after. Try to explain to them what is happening and how you have to behave to alleviate some of the problems.

BTW I was told that my balance issues were down to brain stem damage, this may not be the case with you but just part and parcel of your recovery. I believe my damage was done not by the SAH but the ensuing hydrocephalus that wasn't picked up until I fell into a coma. That is just my opinion though, not a medical one.

[Bev897056]

Penny you are very brave for traveling no your own I admire you for not letting this get to you and just getting on with it. Can I ask how you know also you have hydrocepolis? I just wonder what this strange heavy feeling I always have memory is off and always hazy would I have a head ache if I had that? I dont touch wood have headaches now its just this off dream like feeling all the time x

[Bev897056]

Sorry I ment hydrocepolis I have predictive text no this phone (prob not even spelt that right) x

[Super Mario]

Penny you are very brave for traveling no your own I admire you for not letting this get to you and just getting on with it. Can I ask how you know also you have hydrocepolis? I just wonder what this strange heavy feeling I always have memory is off and always hazy would I have a head ache if I had that? I dont touch wood have headaches now its just this off dream like feeling all the time x

Firstly, not brave at all travelling on my own. I was doing it for quite a few years before my SAH.

Secondly I started with hydrocephalus about 3 days after my SAH, I apparently dropped into a coma rather rapidly and had to have immediate surgery to put a temporary drain in, the surgeon told my relatives that they didn't even have time to scrub, it was gloves on and do it. I think he said they only had 10 mins to relieve the pressure or else it would have been curtains for me.

My own drainage system did not start working again so I had to have a permanent shunt fitted after about 3 weeks. I have no symptoms because the shunt is keeping the pressure correct. In fact other than the burr dent above my forhead and a lump at the back of my skull I forget I even have one.

All this is what I have been told by my family as I have no memory whatsoever for the duration of my hospital stay of about 2 months and only hazy memories of several following months.

I would say that yes you would have a headache, quite a severe one with it as non drainage causes pressure but I am NOT a medical person. You need to ask your GP that question.

[goldfish.girl]

Hi Lisa,

I think you have to remember that you are only 8 weeks in. I know that is so frustrating to hear and I know I used to go to bed each night thinking the next day would be better - I was expecting the recovery to be a bit like the flu or some other bug, where it might take a while but you feel better each day. I have learnt that it really isn't like that.

I was very frightened in the early days with the dizzy, spaced out feeling - like you were in a dream (as you say, hard to explain). Often people would be talking to me & they might as well have been speaking in Russian. I just wasn't understanding what the words meant. This was along with massive bolts of pain in my head and my legs regularly buckling beneath me with no warning. All of these things have got better over time, apart from the legs buckling, they hardly ever do that now, they just don't do what I expect them to very occasionally.The bolts of pain still happen but not as often and I often get what I can only describe as like an electric shock to my brain, where it feels like my head stays still but my brain gets banged over to one side for a few seconds leaving me confused for a few seconds.

What I am trying to explain (quite badly!) is that things may never be perfect but it is very, very unlikely that they will remain as severe as they are for you in the early months. It's also good to remember that other members on BTG have got very much better, live normal lives and go back to work full time! Even those who have been this lucky would be able to reassure you that, in those early days, they also probably never thought they would get this much better.

Hang in there and rest as often as you can. Things ARE going to get better

Michelle xx

Edited December 9, 2012 by goldfish.girl

[Winb143]

I totally agree with what GG put. Look back and see if you think you have progressed, and you also Bev have you improved ?

When I had my SAH I was not with it one bit, I slept and when awake I could not hold myself up.

Now I can walk to bathroom and kitchen and hospital said put her in a home she will never walk again (shakes fist at OT's).lol

Prove them wrong and be awkward lol.

I walk funny but I walk and we can all get better so come on let's all do it xxx xxx

Never give up BTGers

Love to All

WinB143 xxxxxxx

[Bev897056]

Or win you seem like a lovely lass you all r on here. I did think I was getting better but then out of the blue I had the sceizure which sent me back to square one worry worry worry! I know I should think myself lucky as I dont have any major defects that others can see but its the constant dizzy unbalanced as I keep repeating spaced out rubbish but if I dont focus on it as much maybe it will fade! I dont know its just a scary unpredicable time thats frightened the life out of us all! Hopefully it can only make us stronger x x x

[Winb143]

Bev,

I thinkt that the epilepsy and feeling scared is worse than anything ..had them when I reached 14/15 scared the life out of me lol

Then they went, when I had my daughter back they came so any anxiety or pain bring them on I have a low pain theshhold ie a baby lol.

I have had pins and needle in arm since I came round from shunt op, starts at thumb and goes up to shoulder, then my shins hurt all good though lol. as I only remember after shunt nothing preshunt .

I do not want to tempt fate but not had a fit since 2010 since shunt was fitted fingers crossed and I'll keep taking pills ..lol.

Whe you feel scared just go to bed and have a day in, spoil self the next day lol. and lay on side.

Keep getting better

Love

WinB143 xx xx

[kpaggett]

Definitely brain stem or cerebellum or both (they communicate with each other).

I had severe dizziness/vertigo/off balance/drunkenness feelings all the time...that's 24/7 as it pervaded my sleep too. I could never get a break from it. Now I can say that it only comes sometimes or when I change activities (ie.. from reading to getting a snack or from Driving to walking). It still stinks, but I can live with it. Even now, if I have a dizzy time, I do my vestibular exercises that I learned and it gets better. The trick is to do them even as you feel awful and then you feel bad for another 15min because you TRIED to make yourself puke, and then it gets way better after that.

Also, I might get more dizzy if my head is clogged from allergies...so sometimes this lasts for a few days at a time. And then miraculously it lifts. And then because of my PBA (exaggerated emotional expression) - I cry. Happy so happy.

I was dizzy+all that for about 4-5 months and then it started to go away in stages. I thought it would lift all together, but only a bit at a time. I was so happy to get rid of the drunk feeling though after 8months. I cried so hard over that wonderful night. I don't ever think I can drink again because the thought of that feeling....Bluh.

So, the take home messages are:

1. Work your therapy as hard as you can, even if it makes you feel bad, because it pays off.

2. Don't allow yourself to just sit with your head still all day.

3. Also, it CAN GET BETTER...mine did.

4. Finally, I had no real complications with my SAH and it still has taken me way longer than I ever expected due to my healthy active lifestyle before this happened. Your brain heals at its own time. Be kind to it and allow it the space it deserves to heal...you'd do this for anyone else.

~Kris

[jord38]

Thanks so much all. I would be even more of a wreck if it wasn't for all of your comments which are reassuring as you have felt the same. I'm sure you agree Bev as I think you're finding it is hard and scary as me. You're all lovely and I'm so grateful xx