Weird Feeling

[surfgirl14]

Hey guys. So I don't really know how to explain this so i'll try to explain it to the best of my ability. I keep on having this really weird feeling in my head kinda like a brain fog, out of body, not feeling fully there. ugh its really hard to explain to people so I am not sure how to describe it. During the epidosdes I also get shaky and feel just so out of it , and that it's hard to have a conversation. Also I feel tired during the episodes. One thought I had was could it be problems with blood sugar? ex. diabeties, hypoglycemia etc? I have thought about purchasing a blood sugar monitor and moniotor it during this periods to see if there is anything that is going wrong with my blood sugar during these episodes. This feeling is so overhwelming that I just want to sleep because it scares me so badly and makes me feel so very weird. The only thing new that I have started was a medicine called ridalin, but I don't think that has anything to do with it. The reason why I think it may be a blood sugar issue is because my blood pressure and heart rate are fine during these episodes. Idk it just something doesn't feel right with my body during these episodes it is starting to scare me. Do you gusy think the blood sugar things is worth looking into? Has anyone had this before? Suggestions? Just starting to get a bit freaked out , I really hate this feelings. Its awful

Thanks.

[HopeSprings]

Sorry POTSgirl - I know this symptom only too well. It's awful. Mine is more constant, but can get worse after I eat. I haven't been able to make a definite link with blood sugar though. Have you been able to pinpoint what brings it on? Is it worse after you eat? I think it's worth looking into blood sugar. Have you had a glucose tolerance test?

[McBlonde]

That sounds like depersonalization, which is a symptom of anxiety. Does it feel like this?

"Depersonalization is a glitch in the mechanism which is responsible for one's sense of self-awareness, in other words one feels unpleasantly disconnectedfrom the outside world best described by the simile like living in a dream/movie."

http://www.squidoo.com/anxiolytics

[Lemons2lemonade]

ugh this happens to me all the time, and is the hallmark symptom of my pots--the hr is far less annoying. What it feels like to me, is that i am not real--i feel that way because its like all of my feelings and perceptions stop for just a moment--sometimes time slows down or speeds up. My hands feel like they are not mine, or like they are attached to this dense, perceptionless, unliving thing (my body). I get super confused following them, like almost that i can't pay attention long enough to figure out anything that is going on around me. And even if i do figure it out, i lose it again, so i am in this limbo. Sometimes i also get the sensation that i am floating out of my body upwards. I think of it as just part of my presyncope. During that time, all kinds of weird things can happen. I have read before that these are called "depersonalization" and "derealization', also that they can be symptoms of anxiety/depression. However, i don't feel anxious when they happen, and they only happen during a pots attack so i have a hard time believing it is a psychological thing. It seems very physiological.

[McBlonde]

Lemons...exactly! Yesterday, I was walking the track and all of a sudden, out of the blue, I had that feeling of "is this real? Am I really here on earth sorta feeling." Sounds crazy after I typed it, lol, but it's exactly how I felt.

Edited to add.... I don't know how they tell the difference between anxiety and a POTS episode. They feel the sae to me.

[ophelialit]

This is one of the most difficult symptoms to explain to others (and one of the most frustrating in general)! I use words like "floaty" and "spacey," but they don't quite capture how I really feel; for me, this feeling pops up at weird, inopportune times and is exacerbated by anxiety. For instance, while sitting at a red light, I'll suddenly feel dizzy, panicked and feel like I might not "remember" how to drive when the light turns green. As if I've never driven in my life, actually. Or I might be in a meeting and suddenly feel like I won't be able to speak out loud if someone asks me a question...it all just seems totally surreal. Dreamlike? I don't know; I'm not sure there are adjectives that properly describe this one!

[lissy]

I have had that feeling for many years, at first I was treated with an antidepressant and it worked, it def got worse over the years.

[Katybug]

I get it too...like living in a surrealist painting. Wondering if the things around me are really happening, if they are happening at the correct speed, if I am really participating in them. I wish it would stop. This is one of the feelings that makes me not drive some days because I don't trust what's going on around me. I experience this more when I am fatigued and it does not correlate with my heart rate.

I've had my sugar checked many times and done at home monitoring. I am borderline hypoglycemic but these feelings don't correlate with my sugar being low either.

[songcanary]

I frequently had this same feeling early on in my illness. I remember talking to a good friend and then afterwards wondering if I was dreaming it or if I was really there. And that same thing happened many times. Since I've been practicing yoga and fluid/salt loading, it is infrequent. So I take it as a sign of dehydration, at least for me, and make sure to drink enough. But I really don't know if that is the cause, it's just a big guessing game really. I have a glucometer and I have never had low blood sugar during these spells. I only wish it were that obvious!

[heathmcev]

Yes!! Me too!!!! Sometimes I say I feel like my brain is in my feet - which I know sounds nuts. Guess its my way of saying I can't think straight - and maybe it's all of the blood that's pooled in my feet making me feel that way. Very detached but not anxious... Spacey, like the chalkboard I my brain has been wiped clean. Like I'm floating instead of walking. Sometimes I get tunnel vision too.

(null)

[puppylove]

Me too. I get it a random times. For me the scariest part is feeling like parts of my body aren't there- especially my hands. Also, I have noticed at places like malls, doctors offices, school I get this haze/ surreal dizzy feeling- maybe the flouresent lights?

[Lemons2lemonade]

I found a little article on this.

http://www.spring.org.uk/2011/06/10-ways-our-minds-warp-time.php

[McBlonde]

I remembered something. The part of the brain responsible for these feelings of depersonalization or derealaization is the amygdala. Guess what the amygdala also controls?

Autonomic Responses to Fear

Emotional Responses

Memory

Hormonal Response

Guess this is just another over-active POTsie response

[E246]

I dont get this too often but it happened this morning as i left it too long before i had breakfast and i declined rapidly. I definitely link it to lack of food and have had blood sugar checked a few times - always ok.

But like lots of things with pots the standard tests never quite explain the symptoms.

I have bought a blood sugar test kit - I just want to understand the symptoms. Because if it's this then you can do something about it.

[HopeSprings]

You all describe it so well! Does anyone else have this as a constant symptom, rather than episodic? I feel this way 24/7.

[Katybug]

Naomi,

I don't have it constantly now, but I did for about a year and it was terrible. I can't really say what changed for me that made the symptom less frequent. Isn't that the million dollar question?

K

[puppylove]

Before I was diagnosed with POTS and at the beginning I had it constantly. I think it's cause I was just so stressed and confused then.

[Lemons2lemonade]

Yes, naomi, I have it all the time. Interesting, this also was very prevalent for me before the hr started--almost 2 yrs. of it.

[HopeSprings]

Me too, Lemons. Had this for years before I ever noticed tachycardia.

[ophelialit]

I don't have it constantly--it kind of waxes and wanes, but at times it will last for days or weeks. Had a weird episode of it at work yesterday--I was in the bathroom washing my hands, and all of the sudden, they didn't seem like my hands, and that whole dreamlike, surreal feeling took over. I must have played it off OK because the other women who were talking to me at the time (not that I heard anything they said) kept yammering. I just wanted to get back to my office...actually, I wanted to go home, but driving probably wouldn't have been the best idea at that exact moment!

[icesktr189]

You all describe it so well! Does anyone else have this as a constant symptom, rather than episodic? I feel this way 24/7.

yup, right there with ya

[peregrine]

Interesting! Thought it was just Naomi and I with this weird spaciness issue. This is my worst POTS symptom by far - it affects daily life a lot (happens to me 100% of the time while standing/walking and about 75% of the time while sitting, lying down seems to cure it rapidly). I can't drive, have trouble in small meetings (I often space out and can't follow conversations, or can't speak easily), have trouble crossing the street, noticing bumps in the sidewalk, etc. My autonomic neurologist says that it is definitely *not* depersonalization (even though it feels similar, and I have had depersonalization during mood episodes before), and she specifically suggests not using depersonalization as a word to describe it - stick with spaciness or something similar if you're certain it's dysautonomia-related (so that doctors, etc don't try to treat it as an anxiety issue).

So far salt loading, water loading, compression stockings, calcium channel blockers, beta blockers (both atenolol and propranolol), and pyridostigmine (Mestinon) haven't done anything for it. Current successful behavioral techniques (besides walking with someone else, especially holding their hand, which helps a ton) are pretty much limited to avoiding nighttime walking (which makes it worse) and listening to music with one ear (I leave one earbud out for safety) - that way I have a soundtrack of sorts to follow to keep me somewhat in-body.

It's really tricky, and very problematic for me. We're going to try clonidine (since there's some potential evidence for it being sympathetic in origin - it started with Cymbalta, which is a norepi reuptake inhibitor) in a few weeks to see if it helps. Beyond that... autonomic neuro is out of ideas. Sadface.

(sorry to hear other folks are dealing with this, but glad? to hear I'm not alone!)

[Lemons2lemonade]

Just curious, for everyone, what are the changes that happen that make you feel this way as far as taste, touch, smell, hearing, vision? A lot of people are saying surreal, what is it about the scene that is surreal( the speed of the moment, the lighting, the detail, the placement of objects)?

[ophelialit]

Ohhhhhh, good question! I've been sitting here really trying to identify what exactly makes the feeling so surreal....it's tough! For me, I think it's the sensation that things are moving in a way that isn't quite "right"....whether that means too slowly or in a blurry fashion, or that my own movements don't seem to add up to what I think I'm doing at that time. Now that I think about it, I realize that my ears often ring during one of these episodes, but that may be from the anxiety that's triggered by the episode itself. Interesting stuff to ponder!

[mully2014]

Wow!!! I thought I was the only person that ever felt this way! I am also on ritalin to raise the blood pressure for the syncoe episodes. It is amazing all of the connections there are to this condition.