Lemons2lemonade Posted January 17, 2012 Report Share Posted January 17, 2012 Sometimes I feel like pots is slowly torturing me..its weird because I'm not really in any pain (other than the periodic chest pain) but I am still absolutely miserable. And I can't decide whether I like the good days because they give me a break, or hate them because they make going back to a bad day that much worse in perspective....its like a never-ending tease of normality. Does everyone with pre syncope black out? Because it doesn't feel like I am going to "black out" as much as it feels like one of these days I'm actually going to leave my body during one of these stupid episodes and I'm not coming back. I guess I have blacked out before but this leaving my body business is no bueno. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted January 17, 2012 Report Share Posted January 17, 2012 I hate it too. I haven't had a teaser good day in a while, but think that would be just as bad as having bad ones all the time in a way. You think... Maybe??? Am I getting better?? Then, if you were like me...would probably overdo it to the point of excess and be 10x worse the next day.Most of my pre-syncope ends ups in syncope.. but mine is almost always a "black out" sensation even before I actually lose consciousness... even on the rare occasions where I catch myself and can get myself down in time... I can't see or hear a thing. It is just a very difficult illness to cope with. One of the OT doctors I worked with at Mayo said the hardest thing for me to overcome would to to learn to trust my body again. I think about that a lot and the fact that at this point I have NO trust in it whatsoever. How can I????(((Hugs))) Wishing you more good days in the future!Jen Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 17, 2012 Author Report Share Posted January 17, 2012 Thank you Jen, i read your.post.and am hoping things will go better for you as well Quote Link to comment Share on other sites More sharing options...
abbyw Posted January 17, 2012 Report Share Posted January 17, 2012 I am new to this, (2 months) but I really relate. Every time I have a good day, I think "Oh, that was just a bad patch, and now I'm on the uphill", only to have a few bad days. I am having a hard time staying positive. Maybe that is normal for the beginning, but I keep feeling that I should be taking this more in stride. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted January 17, 2012 Report Share Posted January 17, 2012 Me too. I feel robbed of my life, especially over the last year or so. Hang in there, and there is hope in all the new reserach and treatments coming out. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 17, 2012 Report Share Posted January 17, 2012 Oh, thank you for saying it so bluntly. I hate it so much too and am in tears right now. I just don't know what to do anymore. If the symptoms were mild, I could cope and on days when things are more mild I really can deal with this. But so much of the time, things are pretty bad. I love those teaser days because it tells me that my body knows what is normal and where it's supposed to be. Those days are what keep me going. I've never passed out, but also feel out of body. I hate to whine and complain, but it's hard not to be upset about this. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 17, 2012 Report Share Posted January 17, 2012 I feel like my life and my youth was stolen from me by this disease Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 17, 2012 Author Report Share Posted January 17, 2012 I have read a lot of comments on here about people who feel this detatched-out of body type feelings. I don't think it is dissociative or depersonalization, i think it is part of the disorder. I just can't figure out why my "soul" thinks it can just up and try to leave my body whenever it wants. The part of this that i find particularly disturbing is not so much the lack of continuation of the human experience but the fact that it feels like i am going to transcend into some etheral plane of existence. I mean, am i really leaving my body, or is my brain just imagining that? All of this makes me think of the dopamine issues that have been posted on here. Excess levels of dopamine can do bizarre things, in fact it is the cause of schizophrenia, so if we have excess dopamine floating around it could be the culprit for a lot of this. Honestly, when i first got this i was convinced i either A. had a brain tumor or B. was completely psychotic. However, if you think about it, our bodies basically are going through the process of near death all the time--i mean we are a category of people who really push the limits of consciousness and physiological function. And whenever an "attack" hits me, it feels like i am going to die right there. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 18, 2012 Report Share Posted January 18, 2012 A doc called this altered position sense to me - i think that is an ok term for it. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 18, 2012 Report Share Posted January 18, 2012 Lemons, I guess we have to resolve to looking at the positives. Long term follow up studies do show that a significant proportion of people do improve and that can very well happen to us. In terms of pushing the physiological barriers, I don't know what long term effects that might have on us, but thusfar no significant trend has been reported, so I don't think significant long term damage is being produced. This is evidenced by the people on this forum who've had this condition for decades.I think it's reasonable to expect symptom relief, and I hope you find the doctor with the right expertise and ability to give you all the medical world currently has to offer. Feeling better should be possible, and I hope you do. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 18, 2012 Author Report Share Posted January 18, 2012 Thanks jangle Quote Link to comment Share on other sites More sharing options...
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