Hypervigilance?

[calypso]

I swear my brain is malfunctioning! (I know, I left myself wide open there.)

Do any of you sometimes get a little sudden pain or bizarre sensation -- i.e., I just had a horrible shooting pain that occurred suddenly but lasted a total of three seconds or so -- then, before your brain is even fast enough to think about it, you get an almost scared-to-death feeling? I can't exactly explain it well, but I will get these little pains that I am sure mean nothing and I have always had them pre-POTS. But now since becoming ill, it seems like I have become so hypervigilant to any little abnormal feeling that my body literally freaks out before the sensation has even totally set in.

Anyone understand this?

Amy

[Guest GayleP]

Amy,

I can totally relate. I have become very hypervigilant to every ache and pain. And skipped or extra heart beat. On the other hand I seem to have more weird things happening to my body since getting dysautonomia. I don't recall those shoooting pains etc... ever being an issue in the good old days.

I remember when I went to Mayo, Dr Low said that alot of people with dysautonomia are hypervigilant and very aware of their bodies. What he didn't say was why that is.

GayleP

[opus88]

Yes, I have become that way. However, after many years of oddball things like the quick shooting pains, I have learned that it is just another weirdness that my body seems to enjoy throwing my way. I no longer have the panic attacks that go with it - I actually just stop and let myself be hyperaware, but from a curiosity view rather than a fear.

I'm not sure I can explain exactly what I mean, nor how I came to not be frightened by it. But I believe that after so long dealing with these things and finding absolutely no obvious problem resulting from them, my brain understands that it's just something "normal" for me, like having brown hair (well, more gray lately ).

[Merrill]

Amy, I'm exactly the same way too! It's ridiculous sometimes, but I can't seem to help it! (Thank goodness I have an extremely patient husband who doesn't seem to mind my pretty much daily complaints about some new weird thing or another...) For example, for 2.5 days this week, I had a sudden onset of discomfort/pain around my knee--not in the joint, exactly, but more localized in the skin on one side of my knee & leg. My leg was REALLY sensitive, and I was quite uncomfortable. I spent way too much time being concerned about it--why was it happening, what was wrong, worrying that I was having a strange reaction to the compression hose, wondering whether the weird-looking vein (or was it a bruise?) nearby was causing the problem, and so on. I took ibuprofen when I was most bothered and son-of-a-gun... all better now!

Same thing with random shooting pains in my scalp...there are so many instances I couldn't begin to name them. A little panic sometimes sets in. I strive to be like Opus, though, paying attention to these things with an appropriate amount of curiousity and not letting the worry get the best of me. It's hard sometimes, though, so I can definitely relate! But yes, I've always been EXTREMELY sensitive/hypervigilant about even the smallest changes. Comes with the territory, I think.

Take care,

Merrill

[calypso]

Isn't it ridiculous that we occupy our time with these little pains or aches or whatever, only to have them pass sometimes as fast as an hour later?

I honestly don't really care about them or worry about them, but regardless, I still can't stop my body from having that split-second panic response. It's almost like I can't turn it off -- like it happens before I can even think about saying to myself, "No need to pay any attention to that." I really feel like I have unfortunately trained my mind to be that way subconsciously, and now that I don't care anymore, I still can't change it. Does that make sense?

This is by far the strangest illness ever. I had a day last week where I was shopping with my daughter, and I felt like my arms were not part of my body, and I was totally spaced out and felt like I was floating. It felt like my body was filled with air and I weighed 2 pounds. Then it went away a couple hours later, and of course meant nothing to me. But my, is this stuff strange.

Merrill, I also sound like a basket case to my husband. I have stopped mentioning all the stuff because I would spend the whole day doing it otherwise!

Amy

[JLB]

I used to put myself down for this a lot. I don't anymore. I've come to understand that my increased awareness is actually a positive, wonderful thing about me, when it comes to functioning in the world.

I'll bet that those of you who experience this "awareness" are more sensitive in many ways - more compassionate, more loving, more supportive of those who suffer. I'm sure you tend to fully experience life in ways that others don't, because you're so much more aware of every nuance - including the needs and feelings of others, and not only the bad but the good around you. The instincts of those who are termed "hypervigilant" - a better, more accurate term is "perceptive" - are highly developed, and while that can lead to the kind of distress being discussed here, it's also quite often a great benefit to others. And it can be a blessing to those of us with dysautonomia, once we get our ANS back under control, because we have the capability to live life in ways that less perceptive people cannot. This anxiety over the odd aches and pains and symptoms is just the other side of the coin, because with our superior nervous system development, we notice everything. That can be a good thing, once we learn to manage it.

Of course, as a fellow POTS/Dysautonomia person, I do NOT minimize the suffering this can create - just wanted to offer the POV that perhaps, we experience this disorder because we are special, with great gifts and great potential, not damaged - and maybe life can be better than it would have been otherwise, if we embrace our uniqueness and learn to manage it. If we think of it differently.

All you need to do to see the wonderful, loving, healing, unique qualities of those who are fine-tuned to life, is read the members of this board.

Hope I came across as I intended - have a good weekend, everyone.

[Ernie]

Hi JLB,

I reallyappreciate your perspective on hypervigelance. It never occured to me that it made us also more perceptive of others and more compassionate. This makes sense.

Ernie

[Merrill]

Thanks for posting your letter, JLB. Your message is a beautiful one, and I also think you're right on target...

Thank you; we needed that!

[DancingLight]

JLB,

that is a really good point. i always say, my greatest gift is being perceptive, but it can also be my greatest fault! but you put a different twist on it. i am glad you posted that.

amy and merrill...can i just tell you how wonderful it is to hear you have such supportive husbands! it gives me hope and faith!

and, yes, amy...i am hypervigilant too! i think it is a gift to be "in tune" with our bodies...but sometimes, the panic does set in unnecessarily.

but, i also think, WE have to be the ones to pay attention to our bodies. only we know our bodies best. and the thing is, so many of us have to be on such high alert all the time to things b/c in the end WE are the ones that figure out if something is wrong or not...after years of not being taking seriously or dismissed by the medical field. does that make any sense? in some ways, being hyper-vigilant, i think, is survival. yes, sometimes we probably all take it too far, but i think this is also normal. this illness is so bizarre. new symptoms all of the time.

but, i think we do have to listen to our bodies and be the ones aware of things. i.e. i was reflecting on my goofy er visit the other day and i thought how absolutely MENTALLY exhausting it was b/c i had to be on guard the whole time making sure they didn't give me certain meds, or too much, or this or that. they didn't monitor my bp, etc. etc. i thought, man, it was such hard work to go and convince them to pay attention to the pots. they had never even heard of it. i realized how draining it is to really have to be so on guard.

so, i think it goes with the territory...but, sometimes, i wish i would be a little more relaxed about it all! but then, i also don't want to attribute everything to pots and miss something. it is a very difficult balance to achieve!

okay, that was supposed to be much shorter...sorry!

goodnight,

emily