Darlene Posted April 29, 2013 Report Share Posted April 29, 2013 i feel funny sometimes, not sure how to explain it. lightheaded maybe, or feeling like i may pass out... i do not like being alone anymore because of these scary episodes... Quote Link to comment Share on other sites More sharing options...
E Soskis Posted April 29, 2013 Report Share Posted April 29, 2013 I know what you mean. When I am asked "how are you feeling" - there are many times I simply don't know how to answer. I don't feel good but, I don't feel particularly bad - I just can't explain it. How do you explain brain fog, fatigue, confusion, weakness, and general malaise? - All are annoying but, we carry on despite the random symptoms. Are you often alone when you have a sudden flare of symptoms? - I'm lucky because I live with my mother and I work in an office with other medical people so, I'm rarely all alone. Is there someone you can call when you have these bad feelings? - It might help just to have a friend, co-worker, or neighbor you could call and let them be aware of your situation - ask them to call you back in an hour or so to see if you feel better.... Quote Link to comment Share on other sites More sharing options...
puppylove Posted April 29, 2013 Report Share Posted April 29, 2013 Yes. I can't even explain sometimes which is frustrating. I just say I feel "weird"... Quote Link to comment Share on other sites More sharing options...
Racer Posted April 29, 2013 Report Share Posted April 29, 2013 I just say that I am having a episode of low blood pressure (usually the case). It seems that most people understand what low blood sugar or dehydration feels like, and can understand that my issue is similar. If that dosn't work, I just blame it on a migraine. Quote Link to comment Share on other sites More sharing options...
Enid Posted April 30, 2013 Report Share Posted April 30, 2013 wonky is my adjective of choice... Quote Link to comment Share on other sites More sharing options...
blueskies Posted April 30, 2013 Report Share Posted April 30, 2013 So many times, during the night and in the mornings I wake up feeling like I'm coming down with a flu or some other virus only to find, overwhelmingly, that the feeling passes after an hour or so. It's weird. Or probably POTS. Blue Quote Link to comment Share on other sites More sharing options...
Darlene Posted April 30, 2013 Author Report Share Posted April 30, 2013 the only time i had been alone when i felt weird is when i was driving, so i don't do that anymore. my daughter is with me, but she will be going to college soon. hoping them scary episodes don't happen when i m alone. i do have parents that don't live very far. Quote Link to comment Share on other sites More sharing options...
AmberK Posted April 30, 2013 Report Share Posted April 30, 2013 I describe it as wonky or unsteady. Neither really fully covers it, but I find myself fidgeting a lot to counterbalance the weird sensations of movement that go on inside. It's nice to find other people who have similar symptoms. It can make you feel a bit of a freak, as with a broken leg or something, it's easy to describe and understand what's happening. With POTS, you can look completely fine on the outside, while on the inside all **** is breaking loose! Quote Link to comment Share on other sites More sharing options...
AmberK Posted April 30, 2013 Report Share Posted April 30, 2013 Oops sorry for the starred out word! It wasn't a bad word,- honest! Quote Link to comment Share on other sites More sharing options...
margiebee Posted April 30, 2013 Report Share Posted April 30, 2013 I get this feeling as well, it happens pretty frequently when I am driving or alone. It actually seems a lot like derealization or depersonalization to me, I usually feel as if I am not really present physically or that something is very off, almost like a panic attack but not. It usually happens when my HR is shooting very high. Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted April 30, 2013 Report Share Posted April 30, 2013 I resently told my Dr. about those feelings, he right a way used it against me, he said : (see, I told you,you have anxiety and panic attack). I wish if he and other doctors knew that ( anxiety inpatients with POTS is caused by biological rather than psychological factors). Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted April 30, 2013 Report Share Posted April 30, 2013 How true Tachy! Thank goodness for this forum. At least we have each other to bounce ideas and frustrations on. Quote Link to comment Share on other sites More sharing options...
Sheila1366 Posted April 30, 2013 Report Share Posted April 30, 2013 I feel this way all the time, all day. I feel faint all the time. Sitting, standing...doesn't matter. Get pressure in my ears and then can't hear very well. Losing weight thanks to gastroparesis. I feel so vary , very bad. I can barely function. Quote Link to comment Share on other sites More sharing options...
Darlene Posted May 1, 2013 Author Report Share Posted May 1, 2013 yes, depersonalization is what it feels like. feels like i m not getting enough oxygen to my brain. i m not going to be able to work because of it. i applied for ssi may 2012. how do i explain this symptoms as 1 of the reasons i will not be able to work? i just say i feel funny, but i am sure there is better wording. Quote Link to comment Share on other sites More sharing options...
robert elrod Posted May 1, 2013 Report Share Posted May 1, 2013 yes, depersonalization is what it feels like. feels like i m not getting enough oxygen to my brain. i m not going to be able to work because of it. i applied for ssi may 2012. how do i explain this symptoms as 1 of the reasons i will not be able to work? i just say i feel funny, but i am sure there is better wording.I'm not sure if were talking about the same feeling. The best way I can explain how it feels to me is that my entire body experiences time passing slower than my mind is. I have an over whelming pressure in my head and my hearing is either dulled or ringing. Kinda like moving in slow motion, I turn my head fast but has a deleyed time to visualize the changes. Like I have limited control over it and at any time I am not going to be able to keep my balance. Really bad when making quick position changes from squating or sitting ti standing. Hate to use a video game analogy but when you hit too many buttons an th character slows down but still does what you want. I joke that I'm going thru a break in the space time continum and it take a moment to catch back up ..lol As far as SSI refer to it as sever autonomic dysfuntion presenting by limiting your coordination and balance among other symptoms . Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted May 1, 2013 Report Share Posted May 1, 2013 Robert,Thank you very much for this great expression: ( my entire body experiences time passing slower than my mind is). Quote Link to comment Share on other sites More sharing options...
Sufilizard Posted May 1, 2013 Report Share Posted May 1, 2013 I get the weird hearing anomalies too. I'm only recently putting all these symptoms together as POTS-related. I ended up in ER years ago with what seemed like a heart attack. It turned out my heart was fine, but heart rate was extremely high. Later visits to various cardiac specialists showed an incredibly low resting heart rate, but no cardiac problems. Eventually I chalked it up to panic disorder and continued to live with these "attacks" multiple times a day, every day for years.A few years ago a doctor put me on Lexapro for my horrible insomnia and that seemed to also end the "panic attacks" (reinforcing the idea of panic/anxiety). But I'm beginning to realize that for me the panic/anxiety has a very chemical root, not psychological - although psychological factors can certainly exacerbate the problems.I've had trouble figuring out how to describe the "weird" feelings too. I've used the word "depersonalization" before, but I'm not sure if what I'm experiencing fits the clinical definition of it. I know it gets much worse when I have to squat or bend over a lot. Just picking up sticks in the yard for 30 minutes - or worse, pulling weeds - leads to me feeling "off" the rest of the day. It's almost flu-like, but I know it's not from any viral source. Quote Link to comment Share on other sites More sharing options...
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