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side effects & long term side effects after bleed


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Hi guys

I was just wondering if any of you now suffer long term side effects following sah?

I am nearly 9 months after bleed and my main issues are vertigo, fuzzy Headed, feeling as if I am dreaming at times (although this could be a form of sceizure) actually having sceizures and a dislike of being in crowds, shopping centres with bright lights and mainly just not me anymore......oh also shattered all the time no matter how much sleep I get. I presume this will all be with me for a long time as the bleed has killed off cells surrounding it so how can I ever be the same! Just wondered if anyone else has there long term effects xxx

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Almost 9 years down the line I still have persistant dizziness and very little sense of balance. I avoid crowded places, bright liights, flashing lights and noise as they seem to make me even worse. Also things do not register with me like seeing traffic when I am trying to cross a road. Had quite a few near misses with this so I try to stick with crossings or one way streets as they are easier to cope with but, of course practically, that is not always possible.

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My side effects come and go . Right now they are here and worse and I am angry about it. I think it is because part of my body & self is better but not all the brain is following same path. It is a strange confusing place to be.

I recom. that everyone get a copy of their scans etc. so you can better understand where if any damage was done. I get it that mine is in reading and writing, words, numbers & letters. It jst helps me understand and cope better.

Good lUck, Mary

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Hi Bev, the unknown is scary. Not knowing if this is going to be forever or just during recovery and for how long. At 9 months believe it or not it's still early. I've come a long way from where I was at 9 months with symptoms.

We all recover at different rates and long term side effects vary. I'm at 2 years now and although I'm feeling much better I still deal with fatigue and when I am feeling fatigued I get a bunch of neurological symptoms such as blurry vision, sore head, heavy arms and legs etc. I have more energy now than I did before but I'm taking medication to help give me a boost.

I'm pretty certain now that my long term side effects (the stuff that just isn't getting better) is sensitive hearing, trouble dealing with noisy shopping centres and busy fast moving traffic and noisy restaurants. All of that just wears me out and brings on the fatigue and the boatload of symptoms.

As time goes on I'm learning how to manage it all. It makes it easier but isn't a cure. I think I will be managing my time and tasks and doing my own personal energy-saving for the rest of my life.

It's not the same for everyone, unfortunately we don't hear much from people who have 'recovered' and moved on. It would be wonderful to have them pop in sometimes and tell us at what point they started feeling better and if they have long term effects but have just learned to deal with them. Ad if so, how did they do that.

I've had lots of help from a psychologist and occupational rehab therapist.

Sandi K.

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Hi Bev,

Two years and three months down the line, I still suffer with fatigue, shattered all the time like you say, but I am starting hormone treatment next Friday, at long last - yes I am a bloke and having hormone treatment - man i feel like a woman - I've cracked that one before - but when they repaired my bleed they damaged my pituitary gland which fires hormoness around your body so I am having to have replacement growth hormone which affects muscle strength, stamina and sleep patterns, so hopefully after next Friday I should feel more alive. They are giving me a Diabetic type needle pen, but filled with growth hormone instead of insulin and I will have to have that for the rest of my life apparently, but a small price to pay for a better quality of life I hope.

I still suffer with short term memory loss too and have the occasional balance problem, but I am back at work full time but sleep for England when I'm not there. I can drive as well.

I have to say I am fed up at being so damned tired all the time but hopefully there is light at the end of the tunnel for me now. It's been a long road back, mut my doctors and nurses have treated me brillliantly, I have to say. Wonderful people!!

Hang on in there lass - you'll get ther in the end. I know I am lucky when I see others problems persisting over a longer time than mine - we all tread different paths but the support is just the same - this is a great community on here. let us know how you get on - we will support you to get better!! Cos we understand better than anyone else!!

Good luck

Macca

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Orrr thanks everyone and Macca! - man i feel like a woman ha ha -

Yeah i will try 'hang in there' - just find it difficult sometimes coz there is no slacking as i have a 2 year old and have now changed jobs so look after him 5 days a week and work Sat Sun 8 hr shifts - but hey, he will be off to Nursery next April so ill be able to have a bit of free time!!

I have had my medication swapped also to Keppra and that is ment to make you shattered and moody and all sorts, not really looking forward to taking that! My neurologist put me on it as I had a grand mal and said that with having scar tissue, i am more likely to have more scizures (great stuff) so they put me on that as a preventative measure, well tried me on lamotrigine first, but for the first 2 weeks i have been on it i have been on another planet really spaced out - which is no good when i have a small child to look after - so i will see what happens with Keppra - anyone else had any experience of this following just one seizure.

Also plan to get in shape - got a blood pressure machine coz i swear my bleed was caused by stress and probs drinking too much alcohol binge drinking etc which all can cause blood pressure to rise overtime (anyone else have any thoughts in this)???? - who knows its just my conclusion because i am still waiting to see if they will give me another angigram or if what they have done so far is enough (3 CT'S now, 2 MRI and 1 angigram) as neurosurgeon said that the blood clot from the initial bleed could have been pressing on a aneurysm or other malformation which would stop the dye running through it- but wouldn't the other tests I have had since have shown something? if the consultant radiographer decides i dont need another angigram, ill just have to deal with not knowing and keep healthy!!!!

Anyway, thankfully my blood pressure is in 'NORMAL' limits thank the lord!

Ooh i do go on, sorry guys!

Thanks again for your replies -

Bev

xxx

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Bev,

I'm a year and 3 months and have dizziness only occasionally now and one day the fatigue lifted like magic! I do still get fatigued in other parts of my body and I often just wear my sunglasses inside. I still cry often as I had severe emotional expression disturbances, but now where near as long. I always tell my husband if it weren't for the emotional disturbances, I'd be well on my way, I had PTSD and that's faded for most of the time. I usually feel like I've made a good recovery, but then there are the times that throw me back to square one and it is hard for me to identify in the moment that I am not back sliding.

I was on Kepra too. It can make you dizzy, but you don't want another seizure. It's hard when you're already dizzy as I was. and Vertigo too.

Also, I know you want to speculate as to why you had the NASAH. I did too. I had absolutely no lifestyle issues and I still had one. I was the healthiest person I know. Life sure does throw you the unthinkable at times!

Hope you continue to have a good recovery. It sounds good so far and you're getting through it. Remeber, you've been stronger than this thing so far because you're still here living and figuring.

~Kris

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I am 17 months in and fatigue wears me down. Thats like saying aging makes me old!. I was dealing with a bout of depression for the past few weeks but that seems to have lifted a little.

Headaches have become part of my life, I seem to deal with them now by taking ibuprofin for migraines.

I am fed up of the fatigue and the fact that my employer fails to see that as something my sick time could help. Still fighting the battle there. I also have the "fog"

Loud noises get on my nerves. My wife was watching TV a few weeks ago and the commercials were twice as loud as the show. I asked her to turn down the television and she did. The next commercial came on and hit a nerve. I slammed my laptop shut and left the room. Grumpy Gus I should be called.

I used to listen to classical music to sooth my nerves, but for safety reasons, they wont allow headphones at work any more. Luckily I am on the home stretch to retirement. The longest I will have to wait is 275 days, not that I am counting.

I don't think I will ever be the same as I was but hopefully in some ways I am a better person. I know I am way cuter than I used to be :wink:

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Carl I get this odd brain fog too its like a spaced out dazed feeling and my eyesight seems fuzzy a bit like I am dreaming is that what you mean when you say the fog? I dont think I will ever get used to it its with me most days and then the vertigo but you still have yours is it any less though? X

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Hello,

It must be the hat Carl. My wonderful long term side effects are headache 24/7, horrible fatigue, short term memory loss, poor concentration and loud noises.

Restaurants and stores are heck but have gotten a little better. Don't get the fog but sometimes feel like my life is in a fog.

Concerned about future learning disabilites as with issues of memory. You certainly have more challenges Bev and wish you well.

David

Edited by amexdm
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I was at my GP yesterday for a checkup. I asked if the reason we are not given any real answers or directions is because they Neuro people do not know how we will turn out? GP phased and said "Basically yes".

I say I go back and forth with getting better, certainly would be much easier to gauge if I did not work! I thin kI get better and my brain works more and gets overloaded. GP told me we would work on balancing my life and try to find that happy place that is just enough but not too much.

Also google brain fog and under fibromylasia they may have some helpful hints. I was in the department store last weekend & I felt like a moron. Really- spaced out and blank - i was just blank. I felt better once I got outside but this happens all the time in public places. I do not feel as if I panic or anxiety at all just turn into an idiot "Like why am I here?, Where do I go? What am I doing?"

I often go no where. My new thing at work is to avoid people, hide & find a project to do by myself.

Edited by MaryB
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Hi David and Carl,

great to see you two still chipping away and I can relate to all of what you are saying! You too, Mary B and Bev!

This week, the day after tomorrow I start my hormone treatment. just to let me know my body hasn't finished with me yet it has let me know this week that i am still riddled with fatigue and I am wiped out, my short-term memory loss has been in spectacular action this week as well and this morning my face has come out in some monstrous red blotches, presumably because i am run down after doing too many hours at work!! Can't wait to get to hospital on Friday - I just hope they've got the right answer and that it isn't all an anti-climax or worse, a bad dream (a la Dallas).

You keep counting Carl - but do it quietly mind. Inner shouting can be just as damaging as the real thing and frustration comes out in relationships with others - so chill and strike another pose in that hat. Fantastic Carl, I wish I was retiring too!!

David, you sound a llot happier and more positive these days - it's great to see. I know there are still problems, but they are manageable for all of us and we are learning how to cope better every day.

Mary B and Bev - isn't it great that we can share and halve our problems with some fabulous people who really do understand our plight? Keep on chugging away - the light is at the end of the tunnel

Best wishes to all

Macca

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It's not the same for everyone, unfortunately we don't hear much from people who have 'recovered' and moved on. It would be wonderful to have them pop in sometimes and tell us at what point they started feeling better and if they have long term effects but have just learned to deal with them. Ad if so, how did they do that.

Sandi K.

I'm "that" person Sandi is referring to. I'm 10 months out with zero after effects. At the time of the event back in January, I would never have guessed how it would have played out. I believe my bleed happened to allow me coping skills for my cancer. I was undergoing treatment for two primary cancers at the time, just 10 days out from surgery number two, which involved lymph nodes.

My sensory area of my brain was compromised initially, so I was left with visual issues, mapping, depth perception, sense of touch, balance and hearing problems, not to mention the disabling headaches. I regained my strength and abilities by week seven. I started to drive, golf, bike ride, hike and returned to the gym shortly after. I underwent two lots of radiation in April and May, returned to work in June full time. I never experienced a headache after the fourth week and never experienced any fatigue related to either the bleed or the radiation assault.

Perhaps I am the exception, not the rule. My bleed was large, but stopped on it's own. I will never know the cause, but it was a life lesson to me. I have been discharged from the neurosurgeon's care and the cancer agency has released me as I am considered cured. I am on no medication, suffer no ill effects what so ever. In fact, other than my presence in this website and some photos my husband took of me in hospital, I really can't believe it happened.

I always view the glass as half full and keep a most positive outlook on life. I am lucky to be alive and am grateful. I have been approached to do two women's magazine articles on inspiring others who are dealt life's rotten cards. You can be dealt those ugly cards, but how you play them is important. I always clung to the one doctor who always told me I would recover 100% and I did. I believed it. Healing touch was beneficial and the support of friends and family made a huge difference in my recovery.

I am back to my old self, only better. I'm a happier person. Got my season's ski pass --- good to go!

Edited by Guest
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I used to think I suffered from fatigue, but then I went back to work and now I know I suffer from fatigue. I also still get headaches but again, this is something that has increased with working and can be managed ok with paracetamol. I still suffer with sleep problems, my bed is my nemesis!

I am not very emotional any more, I used to cry every time I found something that I could no longer do, which was often! I don't know if I'm less weepy now or if I've come across most things already and have stopped finding new things that I've lost the ability to do!

The spaced out foggy feeling has lessened from virtually constant to only special occasions like using the supermarket, family dinners and things that have a lot of action/motion/noise. I still have very sensitive hearing and carry earplugs everywhere. I think Carl mentioned tv earlier, I have this problem too and I know when I'm very tired as I just can't stand to listen to the tv for any length of time. I can watch tv with my earplugs in and this lets me hear the talking but cuts out some of the music which for some reason these days seems to be very loud!

On the whole things are much, much better. I think I must be coming to a stage of acceptance as i actually prefer the person I am now. The changes are not all negative, I am calmer, nicer, more sympathetic to others. I can eat spicy food (you have no idea how happy this makes me!), I have lost my fear of spiders and dentists and I am less serious these days, I am more likely to laugh at myself than before. While I am not glad that I've had the bleed and all the stuff that comes with it, I think I have a nicer life now and my priorities are more how I would like them to be.

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The fog,

Yes I get 'The FOG'. I used to have that funny visual-dream state all the time. Has anyone done 'Magic Eye' books? It is that state when you're about to see the 3D pop out, but you can't quite get it yet...that's what it was like all the time. Now it usually only happens when I am tired or at the beginning of a meaty discussion/thing I'm studying. I push through it and it lifts and then it's like it was never there.

It's like the wheel has to warm up a little before it gets turning at full speed. However, if I'm tired, then there is no speeding the wheel up. I also notice this with my cello. Some days I can play a certain passage up to speed and others, I am slow as mud. However, when I got neuro-psychological testing, I was 'Retarded'~70, in my speed of pushing a button over and over.

Now I am within normal limits~100, but it sometimes is still too slow for cello playing. This is so annoying as other musicians don't understand why I can't just do the passage consistently all the time after I've learned it.

~Kris

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  • 2 years later...

Hi i had a sah in 2003 it took me a long time to recover psychologically, and not have mad panic attacks everytime i got a headache. I still get the odd headache now but try not to let it bother me. i do however sometimes get a strange sensation when trying to fall asleep, almost like a balloon being blown up in my head, dont know if this is normal or if there is anything i can do to prevent this.

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Hi Krisse84,

 

If worried see Docs as stress is no good for us (My Surgeon told me this).

 

Even if it's nothing it's better to be safe than sorry.

 

So go make an appointment and stop worrying xx

 

Good Luck and let us know how you get on xx

 

Best Wishes

Winb143

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