Hi guys, hope all are doing well 
just wanted to ask, Sometimes i feel disconnected from lifeā¦its so weird i knowā¦ i feel like i donāt understand things,whats going on. 
i donāt know if this is anxiety or my Avm is acting up. Just wanted to know if People are experiencing the same thing ? Xx
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Yes, we all experience this for time to time, itās all part of avm survival, no one understands but another avmāer, take care,
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I just got out of ICU today and remember having a conversation with a nurse about how normal I looked being in there compared to everyone else. As I laid there listening to this high flowing AVM in my head I felt like that. I was carrying on this conversation and trying to act normal but actually felt removed from everything happening around me.
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Yeah, that whole ālook so normalā thing. My neurologist used to say that to me all the time, āSomeone who didnāt know your medical history, they wouldnāt think there was anything wrong with you.ā
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Hi Reem
That is the kind of feeling that I get sometimes. Like a strange overwhelming weirdness of being lost or not getting anything that is going on around me. Totally get what you are describing even though I canāt truelly describe what I am experiencing if that makes sense !! 
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Omg yess i swear. Like the only thing that makes me come back is to remeber my memories on this earth lol.
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Good to hear that I am not alone and in the AVM community itās kinda normal !! I was worried as it was a symptom that scared me a bit
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You are so not alone! We get it. āTheyā donāt. Sometimes itās so hard to explain to the outside world what youāre going through. Sometimes we donāt understand it either. I used to try so dam hard to appear ānormalā. That old normal is gone and youāre still in the process of understanding and accepting your ānewā normal. Shout out to us if youāre feeling strange/different. Weāve been there, done that, and we still struggle on a daily basis. Wishing you the very best.
Sharon Dā¦
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Itās like watching your own life self destruct!!!
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Yes totallyšæ
Itās almost impossible but you can have everything that you had before and more back. PUSH!!!
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Hello there fellow survivor,
I am new to this site and decided your post was the first one I was going to reply to. I am 18 years old and often feel this same disconnect from my life. These next coming years are supposed to be some of the best of my life. But, instead I am experiencing so much anxiety, and constant pain. This has been my new normal since 2013. My biggest tip for you would be to really grip tightly to the things and people that make you feel grounded. What I mean by this is really appreciate the small things I suppose. My best friend knows more about my disease than most of my family members. He knows my personal connections to the AVM world, when my pain flares up, and how to be there for me when things couldnāt get any worse. He knows how to bring me out of my clouds of anxiety for sure. I also take time most of the time to try and do for myself. Small things tend to help in aiding me to feel more connected to myself and the world around me.
Best Wishes- N
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Sometimes I too feel like all of this is surrealā¦ I was known as being one of the smartest students at school before my bleed when I was ten, so when I was diagnosed with a brain AVM, it was like it ripped me of my identity. I even had a personality change shortly after. When I was put out for my last Gamma Knife, I actually started hallucinating that my body (except my head) was floating above meā¦ I was conscious enough to recognize it as a hallucination, but I could feel my body above me, and I could only feel my actually body if I wiggled my toes.
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I had tons of teachers and principals who didnāt think I needed accommodations in school after my brain AVM bleed, because I had no physical or visible disabilities. They didnāt see the short-term memory loss or fatigue until they sat down with me for a full day. I often joked about wearing band-aids on my head so people would know that I was a changed person, and while by the time I was in high school everyone I knew was aware of my story, I still wore band-aids over my forehead following my second gamma knife surgery in grade 11, just to show everyone that even after six years since the bleed, the AVM was still a major part of my life.
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I had an AVM in my thalamus about 19 years ago and I have had that disconnected feeling from time to time ever since. It is like I am travelling through life encased in a glass box. I can see everything that is going on around me by=ut somehow I am unable to reach out and connect with it.
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I know wha you mean . I sometimes feel a bit strange ā¦ hard to describe but itās just like somethings not quite right , then I get anxious about it. I can deal with my anxiety now. Iām not sure if itās the avm, medsā¦ ( lomotrigene and a small dose of clonezapam). Whatever it is I have to deal with it and I know life will never be like it was before. YouTube sites with meditation have been a great help with relaxation and breathing exercises. I know when Iām anxious I donāt breath properly and can end up light headed . Take care,best wishes.
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Hello, all! I understand. I seem to be older than you, as my cerebellar AVM ruptured 24 years ago, and I survived after being quickly diagnosed and undergoing a craniotomy. In my experience, I felt ādifferentā than others because I was. I was a living miracle.
Anytime after a hospitalization, I leave thinking thinking how other people have no idea what transpired. Then, I look around, and realize that there are others around me, with different diagnoses, who are in the same boat, and I donāt know who THEY are!
I still go through this āfeeling separateā feeling, as I have fibromyalgia, too! I look ānormalā. But, I have symptoms and everyday issues.
The one thing I would say when that āseparate, gless boxā feeling was the strongest, I was clinically depressed. Could this be what you are experiencing? THAT intense feeling subsided with treatment. Think about it.
Much love and strength to all of us!
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Hello, yes!! Sounds like your describing me, this year is my 30th year since surgery, we sound like weāre dealing with similar issues, best of luck to you, hang in there and be strong, never give up,
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Itās good reading that we arenāt alone. Weird feelings of disconnect.
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Iām in speech therapy now and people are like you look so good I wish they could feel my head.lol
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