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Was just wondering if anyone gets this dreaded feeling like a feeling of unease and uncertainity? Its hard to describe and maybe is cos I got the news of avm that I have it or maybe its the being back in the hospital for angigram thats dragged old memories up. I saw a lot of the same nurses and drs I say in april last year when they admitted me and that also made me feel odd! I just feel strange and dont like it x

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Bev, going back must be so hard. I only went to visit on my year anniversary and I found it very emotional.

No wonder you feel uneasy, your poor brain must be going into overdrive! Take care of yourself and try not to think to hard and just take each day at a time and talk to people to share and half your worries, big hugs xx

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Hi Bev!

You're feelings are pretty normal I'd say.

Uncertainty can feel scary and knowing things can be scary too.

I felt anxious and yucky about lots of things the first year (and into the 2nd too) Going back for cerebral arteriogram at the six month point was awful. Tried to be the "happy Carolyn, everything will be fine, no worries". Truth is, I was terrified. I, too, saw dr.s and nurses who'd I'd seen when hospitalized and it was rather freaky. Everything did work out just fine, but I understand those "ick" feelings.

I still get those feelings when I've had to go back to hospital for tests and such. It has gotten a little easier now (almost 3 yrs. post SAH) but memories pop in. I think they probably always will, we aren't ever going to forget what's happened to us and that's normal too.

Hang in there sweetie. Sending you lots of good energy and big hugs across the pond. xxxooo

Carolyn

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Bev Dear,

If you did not have those feelings you would not be normal. I feel the same way with this stupid brain tumor now that last month my Neurosurgeon said we can remove it. I was told earlier not to worry so now I am doing the same thing of do I want to relive any of that recovery again?? Plus all the "what if's"? I think having to deal with another brain issue just can throw us over the edge. My friend at lunch on Saturday was talking about her mammograms as she is recovered from breast cancer and how she gets all weird when she has to go in for scans. So it is not just us.

I never had problems with the test etc......as I would never recognize anyone from that time other than my surgeon. I can meditate through the MRI's etc but that icky feeling is gone now. I do not recall how far out you are. I really count on that paragraph written under people name to remind me of that. I think you are early on though and it does get easier. It all gets easier but when we are facing something and we are tired it makes us crazy and unsettled. Hope you can find a happy place for the time being. I just tend to ignore things and put them on a shelf until I have to deal with them. Probably not the healthiest way to deal with stuff though. Try not to worry as it is a waste of our precious energy and does us no good. I think that is why I put things on that shelf. Big hug. maryb

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Hi Bev, know exactly what you mean. Having felt a bit more positive I'm back to feeling scared, the feeling of dread, like something isn't right. Been feeling really horrid lately, weird pain, dizziness, like I'm not there, just weird. Dr is writing to neurologist to request I get checked earlier than six months.

I'm not surprised you're feeling that way after the shock you had. Just want you to know you're not alone in those feelings xx

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Bev I felt unease and anxious (downright frightened) of some things for months after my SAH. I was overly afraid of things and I look back now and think how odd it is that I didn't really see it at the time. Even though people were posting about anxiety and even PTSD here on BTG I didn't relate.

I was mostly afraid to take my dog out around our 1 acre garden. I was certain that the neighbors dogs were going to come running after us. I was always on the 'look out'. I would make sure all the doors of the house were unlocked so I could pick up the dog and run back inside if I had too. I was also worried that a cougar might attack us. I was always looking and listening.

I've been thinking about this lately because my dog has a disease that makes him pee all the time so there are trips outside all day and all night. Now I go out, in my pyjamas, in the dark, in the middle of the night, and I don't think twice. I don't look and listen and worry. It's a huge difference from just over a year ago. Now I walk my dog all over the garden and I don't think about the neighbors dogs. If they did come I would tell them to go home.

It's odd how my brain turned my anxiety over what happened to me into being afraid of being outside in my yard. That's not where my SAH happened. I was at work when it happened.

Sandi K.

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Lisa that dizzy woozy head feeling and that feeling like your not there is horrendos! I get it everyday its the worst bit and scares the hell out of me its like I am dreaming kinda thing and not even the neurologist Had an explanation for it just said its from the bleed but I think its mini type of sceizure or something. What ever it is makes it hard to live through the day x x I hope you get an answer from who ever you see x

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Bev,

I had to go in for my 6 week post and I didn't see the neurosurgeon as he was called out on an emergency. I got a physicians assistant so I never saw anyone from my time in the hospital. (At the time, I was terrified of the escalator and cried at the top as my husband had already made it to the bottom...he did come back up and we took the elevator instead).

I had always thought that I'd go back and see everyone at one year, but when one year arrived, I knew I couldn't handle it. Now, I could handle it, but I have no desire to go back.

One of the symptoms of PTSD is hyper-vigilance that some of you talked about. Looking out for everything and being on high alert. I definitely was and still am on occasion. However, it is perfectly normal to feel all that unease with hospital staff and surroundings. You hate them, but love them at the same time. They are not your friends even though they were friendly to you. It is so weird.

I'm so glad you found an answer to your question as to what happened to you. Happiness. Will your course of treatment be any different? I wish I knew about mine. Jealousness!

~Kris

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Hi yeah I did finally get an answer so it saves me from constantly asking what the hell happened. I was sure there was something and they finally found it. Yeah will have gamma knife surgery which is like a bolt of radiation and over a period of 2 years the avm will be obliterated and I will be back to new! Well maybe not actually cos I will always feel strange I guess from blood sat in my brain for god knows how long but I have an answer so for now ill take the next step on the chin with treatment x x

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Haven't been on here for a while. Things were going well and, hey, it was all back to normal. I was practically euphoric a week ago but how things have changed. I'm in the middle of feeling incredibly anxious and have cried for no reason twice today alone. Oh, experiencing sensations in my head and arms again just to add to the fun.

Perhaps it's because I'm on the countdown to seeing my consultant for the first time since my SAH last July.

I've also gone back to wanting an answer. I'm no longer satisfied with 'it happened, it is unlikely to happen again'. I swear that one of the docs told me that I would have an angio ever year to keep a check on things. Does anyone else receive these kinds of checks?

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Hi gaynor sorry to hear your feeling anxious again. I totally understand what your saying. I was not satisfied at all with just being told it just happens and I had a blood clot for sometime in my head which they let it break down on its own -and they said this is what masked the avm cos it was pressing on it and not showing up on tests. I would ask for another angigram because I personally dont believe you just have a brain hemeridge. Everyone always said there must be a reason and I drove myself mad asking the question over and over and tiny finally found the cause. Push and ask for more tests. Let me know how you get on x

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  • 5 weeks later...

Gaynor,

I had no known cause identified for mine either. I've come to a place where I found that it doesn't matter how/why it happened...it happened and it sucked. If you read posts from people who had an aneurysm identified, they are still going through the whole healing process just the same as we are. If there were a cause for the hemorrhage, would your recovery be any different? The main thing for me is looking at all the deficits that have faded into the woodwork. I'm so happy and proud of the progress I've made. Sure it still is awful not knowing, but do we really ever know the secrets of life? We just live it mostly in our own ways.

It is normal what you're feeling by the way. I totally went through it too. I just hope you can get through it faster and with more grace than I did.

~Kris

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