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Just back on-line pSAH.


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My SAH was in 8/11 and I am just getting back on line. I have to limit the time since it makes me seasick. I was hospitalized for 3 weeks and am home now, but still not a day goes by without me being constantly reminded about what happened. I'd say I'm about a 6 on the 1-10 Kris scale at this point. I was at a 0 so I'm definitely getting better. I had such severe vertigo did anyone else have this? Now I just get a little dizzy when I get up or something. I've been drawn to yoga which is really helping with my balance. I also work out on a balance beam twice/week.

At first, I had perfect pitch! And I was a super taster. Pepper and sour foods really were intense-that's getting more normal. Any other sensitives out there?

Also, I've had strange cognitive deficits like not being able to look for things; if it's not in front of my face, I don't see it. And I have a hard time taking shortcuts in math or even getting really distracted to the point where it takes me forever to fix a simple lunch. Weird. My cello playing isn't what I want it to be...but at least I can feel the music now. I was so autistic like for a while.

I can't wait to be apart of this community! What a blessing to find it. Was my SAH a blessing?

~Kris

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Hi Kris.

Welcome to this family of survivors.

Vertigo and "sea sickness", two very familiar sensations in my life.

Also, not being able to look at people in checked shirts or stand on highly pattered carpets without the visual disturbances causing nausea.

I too , have reduced sense of taste and smell, and tend to eat highly flavoured foods now.

Over the last few years, I have come to realize that one of the biggest problems that invades my working life is body language.

Third nerve palsy, double vision and poor balance lead me to adopt a peculiar body stance, that could be misread as ignorance.

I tend to look at the floor when people talk to me, not out of disrespect, but because it is much more comfortable than coping with the dual image.

The normal distance (two feet) that is usual in conversation, is too close for me, so I back off, which is sometimes interpreted as coldness.

All my colleagues, at work, are aware of these traits now, so it is not a problem, until someone new arrives, then I have to explain all over again.

I have never had perfect pitch, but have been a musician for all my adult life, and definitely "feel" music much more than just hear it, post SAH.

I am seven years into recovery and have come accept all the changes in my life, as you will, given time.

You seem to have a great handle on it all, already!

As for Autism, I think I was Autistic before my SAH, collecting comics, medals, coins, WW1+ WW11 memorabilia, newspapers and vinyl records.

Post SAH, I collect nothing, and live in the moment as much as I can.

Your experience sounds similar to mine, if it's not in front of me, it's behind, and of no relevance.

If you can learn to revel in your quirkiness, and people accept you in your altered state, you will be fine.

Keep posting Kris, we all understand the process.

All the best.

Bill B.

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Welcome Kris,

I am pretty new here but I have found this place to be a wonderful, comforting place to come to.

I had my episode on 9/16/2011. They were unable to clip, I suffered a stroke and also found out I have a small tumor as well.

I have just got my taste buds back. I just stopped being dizzy but suffered a set back when I was put on some anti seizure medications. They made me so much worse, I felt like I did the first week I was home again. With that medication I was dizzy on my inhales was losing my breathe just talking, felt like my ears were full of water again and swishing around, noise became a BIG issue again. I am higly distracted and somedays I cannot my a decision to save my soul. I pinned a note to the front of my shirt the other day so I could remember something. I am just learning to adjust my sails and smell the roses. I have learned to rest everyday and try to never over do it. Which I was pretty bad at prior to SAH. I try to drink tons of water, eat right - always have been a whole food eater. I need exercise, that is my next step. I am just trying to get working again under my belt. Good Luck, I hope you find this place as valuable as I do. MaryB

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Welcome to BTG Kris! Lots of support here, very caring people who've been through it and can relate.

I had vertigo and found a gentle healing yoga that helped me find balance and feel strong and confident on my legs again. The difference was amazing and I absolutely credit the yoga for helping me through that. I avoided poses that had head down for very long though, I found those uncomfortable.

My sensitivity was hearing. When I came home from hospital I had acutely sensitive hearing and could hear the plates touching each other in the kitchen cupboard as I stood at the counter. I heard each individual raindrop as it fell, hundreds and thousands of them. I couldn't have the volume on at the TV on at all. I even unplugged the cable box in my bedroom, even powered off I could still hear it chugging away. I've not had the cable box back on in my bedroom. I have a big blank flat screen TV on my dresser that never gets watched. My hearing got better over a month or so but it never went entirely back to normal. I'm still sensitive to noise and loud sounds and I wear earplugs (I have a 10 pack in my purse) at the theatre and stuff like that.

There are definately blessings to having a SAH. Have a look at the threads 'things I miss' and 'things I don't miss'. Life is simpler for me now, it's easier knowing what is important and what matters.

Sandi K. Xoxox

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Hey Sandi

Now that you mention it, my hearing is now sensitive too. I asked my husband the other day if the TV was on in the kitchen because I could hear voices. Needless to say he looked at me as if to "mmm I'm sure you are":lol: It turned out that I could hear the radio on upstairs on a low volume of the sound of the TV downstairs. I've even been able to hear a watch ticking in a drawer in the kitchen - I was in the kitchen but hearing a tiny watch ticking in a drawer!!!!

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Prior to my SAH I could not stand hearing the refrigerator hum or any noise in the house. Now I am sensitive to noise but what is weird is I often hear faint bells ringing, we live near churches but it is more like someones cell phone ringer. Also when I get my massages the clock ticks funny in there, it drives me crazy!! I would love to go to a deserted beach some where and see if I hear ticking, humming and bells.

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Hi Mary B.

Ditto the fridge, and also the washing- machine and PC fan.

My tinnitus takes the form of the after- ring of some gigantic bell and when some machine adds its volume to the existing noise

it becomes a real irritation.

I would love experience silence again, but I suppose I never will.

The up-side is, that, in my work with noisy teenagers, I have developed the ability to filter out all irrelevant sound.

Some of my support workers ask me, why don't I act when students swear or threaten each other. The reason is, I just didn't hear them.

I was focused on something else and my brain just ignored the outrage.

This is not always a good thing.

On two separate occasions I have failed to respond to a fire- alarm and have been shaken into action by support workers, who are incredulous

about my lack of response.

I try to explain that, the sound just did not register,but they don't seem to understand or believe me.

They think I'm a bit eccentric, but I can live with that.

If I had scars or some other physical demonstration of my condition, they would accept my behavior without question.

I know, that a lot of people on this site have had similar experiences.

The workplace just doesn't seem to acknowledge SAH, and yet it is fully responsive to heart attack.

I suppose that is the consequence of being such a small percentage of the population.

Even my name sounds loud in my head!

All the best.

Bill B.............................Ad infinitum...................

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Hi Bill, I ignore or tune out as much as I can but I am afraid I am not very good at it. I work with barking dogs all days, phones ringing in a fast pace office. I have some loud talkers there as well. I am or use to be a loud talker as well. More so when I drink!! I so long for silence…… Before SAH my husband & I could take 8 hour drive and speak only a few times with no music. I am worse now. I think a fire alarm would send me over the edge! I have had a few occasions of a delayed “startle” which is very strange and people are alarmed about. That’s embarrassing for me and the people that I scream and panic in their face with. I was telling a friend the other day I wish Mr. Rogers was still on TV because he had such a calm soothing voice.

Kris, There are days I cannot do something like pick out a pair of white socks when they all look alike. And I am no longer obcessed with time............I cannot get it together to get out of the house on time for the most part. I take notes. I take many notes. They are all over the place. I sometimes collect them and of course I repeat the same things on my TO DO LIST and can never find that phone number I wrote down. I now have learned that when I write a note it appears to be more like a sentence or 2 about what the note is about. I have many scrape of paper and post it's everywhere. I can harldy wait to do our taxes this year. That ought to be a trip.

Not to change the subject but I have a good thing to share. I had spent 2 hours in dentist chair yesterday & did not wake up with a brain hemorrhage like the last time I spent time at the dentist. That is good because when you turn 50 your teeth start breaking every time you turn around! I also have a bad thing I was just putting lotion on my face, I just put perfume around my eyes instead of fancy eye cream. I need to go work a bit harder to get this off as it stings my eye. I swear this cup is just always ½ full.

Have a good evening.

maryB

Edited by MaryB
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Thanks a bunch for all your comments. Maybe I can share some of my poetry too if I think of it at the right time :)

Last night my husband was helping with looking for things by playing a hide the object game with me. The first time I tried it, I required lots of verbal prompts(hints) and I just kept saying the objects name over and ove ...not about where could it be or just keeping quiet, but the second night I was able to keep quiet and didn't need any hints for the two trials....we are very scientific :)

I'd love to know if anyone has trouble crying uncontrollably so that your belly hurts and if so, how do you work on improving that? Or does it just get better as time goes by? Any thoughts would be so helpful.

Maybe when I get back to composing, I'll write a ditty for me (Cello) and Bill (Guitar?-what type).

~Kris

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Kris Hi,

I have gone deep voiced ....cannot sing but can't reach high notes anymore.....just call me screecher

Had problems with sea sound in ears ....found going shopping took noise away ...it's cost me a fortune shopping so far ..lol

We all have good days and rough days.....just make the most of the good ones

Good luck on your getting better trip (and you will)

Love

WinB143 xxxx

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Hi Kris.

Emotional over sensitivity is a definite by product of SAH.

Pre- SAH I was immune to sentimental stimulus, but now, I become tearful at the most cheesy , obvious , tear -jerking advert or film.

This is a good thing! It makes me stronger in my job and a much more affable person in my every-day life.

I really like being in contact with my emotional self, it makes me feel more genuine , as a human being , if that makes any sense.

Re -evaluating what is important to yourself is one of the positive things that follow SAH.

I think that when you return to composing, you will do so with a new insight, that will eclipse your previous attempts.

When I started writing music again, following my SAH, the ideas just flooded out, and, for almost a year , new tunes came every week.

The sum- total was, 48 tracks of completed songs , that have taken 5 years to edit , and turn into albums.

We are still working on the editing. We posted loads of (work -in -progress) stuff on the internet ( www. myspace.com/aethertrip).

The real beauty of this terrible event, is the profound insight that emerges from the carnage.

I love cellos, and use synthesizers to produce the sound, but real cellos are best!

I teach poetry and creative writing for a living, so I would love to read your poetry.

Poetry is the distillation of the written word, that allows the inner ,reflective , self, an outlet of emotion.

Maybe, we should have a poetry section somewhere on this site. I bet most of our members have one, or more, profound

examples of inner -turmoil, that needs to be read.

"Until all the wrongs have been addressed,

And folk, will say, this, is the best,

I just can't wait, I start today,

Iv'e just got to work out,

What to say?"

Keep creating!

All the best.

Bill B.

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