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IDreamInColor

Is This My Pots, Or Something Completely Different Going On?

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Dx'ed with POTS 6 years ago, but I've had this monster since I was 15, I'm now 46. I have many many symptoms, the nausea, the chest burning, the blackouts when you stand up, and all those common symptoms but I have this symptom which comes and goes and frankly it scared the doopy out of me. It's a horrible feeling in my head. I don't know if this is related to pots or if it's something completely different going on.

To me it sounds like something neurological, I'll try to describe it the best I can. When I get this symptom is lasts anywhere from a couple days, or as long as a week or two, and then it will subside for a while, only to come back again. I feel it in my head, it's not a lightheaded feeling, it seems to be in connection with eye movement. It almost feels like when I move my head my eyes are trying to catch up to the head movement. It feels like my eyes lag behind and constantly trying to catch up to the head or eye movement. And it makes my head feel horrible, just a very "off" feeling in my head. Gosh I'm having a hard time describing this.

And also, at times while having a flair up with this particular symptom I also get leg jerks. All of a sudden I get a more intense horrible feeling in my head and within seconds my legs make a sudden violent jerk.

I can deal with all the other symptoms, the nausea, chest pain, blah blah blah,,,but THIS particular symptom scares me, it seriously makes me want to sit and cry. I went about 3 weeks without this symptom, but it came back this past Sunday, and has not let up since then.

I have been to two neurological doctors, and neither one were of any help, they weren't familiar with POTS, and of course blamed it all on anxiety, grrr!!!!! I'm currently searching for a different doctor. But in the meantime, can anyone relate to this? Is this a POTS symptom, or something completely different?

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I don't have an answer for you, but I'm pretty sure I experience the same thing. It's not quite dizziness or lightheadedness, but it makes you feel like you could be easily put off balance or that your brain is working more slowly to focus on things around you, right? Almost like eye strain, sort of? At least for me it seems like I just can't quite focus on things correctly, and seeing/comprehending things takes longer than normal. I'm sure it's not my eyes, because it will go away after a few days or weeks and I'm "normal" again.

I just got over a two week bout of whatever that is. I was also sick to my stomach the whole time, like two weeks of being car sick. I never actually threw up, and I don't know if the queasiness was due to being dizzy from whatever the visual disconnect was, or just from being sick in general. I also had joint pain in my knees and hands. I'm waiting on blood work for suspected autoimmune issues.

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I get this exact same thing. You describe it well. It used to come and go , but recently I have delt with it at varying levels of severity daily for a couple of MONTHS. Bothers me less when I am outside..not trying to focus on anything too close. Don't have any answers or helpful treatments to share ( sadly). Just know you're not the only one.

Angelloz

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I get the eye vs. head thing. I describe it as feeling like my reflexes are a millasecond behind my thought. It also makes me feel like I am living in a Salvador Dali painting. I am pretty sure it is related to either POTS or migraine.

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I am sooooo happy to see that other people deal with this too! Living in a Dali painting is a wonderful description. Yeah, it could totally be migraine, too, I suppose.

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YES! This happens to me too. It's horrible and way worse when I'm at school or a store.

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I can totally relate to your description of feeling like your eyes have to catch up to your head movement. Sometimes I've tried to explain it to my husband by using the kids toy where there is a hard clear plastic ball on the outside with another colored ball inside that spins independently as an example. The outside ball may stop moving but the inside one is still moving around and not lined up right...like it feels my eyeballs don't line up right with their sockets. LOL

Really glad other people understand this because I just thought it was me being weird. :D

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I agree with you, it does sound neurological. Not sure if your aware but not all neurologist are the same. Kinda of like most allergists and not really immunology doctors even though that is how it's listed.

There is a subspecialty of neurologists who specialize in treating autoimmune neuromuscular diseases. That would be the question that I would ask when checking out a neuro. Do they treat polyneuropathies, ms, als, dermamysotis. All these type of illness can cause autonomic neuropathy.

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IDreamInColor,

Hi, it must be POTS, the same thing happens to me. I think you described it perfectly. My eyes do the same thing. Its almost as if Ive been druged. My muscles ususally start there thing at night or when sitting. I have just seen a Neurologist about this and she found nothing she thought would be causing these symptoms and says it is my pots. I think it is just our bodies over reacting to not getting restful sleep, or at least that seems to be when I notice it most.

Lisa

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I'm pretty sure I experience what you are describing. For the longest time I kept trying to explain it as a little trail or if I moved my head it seemed as though things lagged behind. Generally out of sink. But nobody got it.

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Absolutely on the eye/ head problem, I noticed it more while walking and I turn my head in any fast movement or look up then down, also if Im sitting watching TV and they move the camera to fast. I Have to stay focused with little head movement like a daydreaming state . I thought it was in the neuro, spine, or ear dept...lol lots to sift through... Apparently its not outside of the POTS problems.

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My doctor who diagnosed me a neurologist in Pittsburgh, told me about a year ago that there was an article in a journal that said many pots patients also have a seizure trigger. It somehow is from one of the many pieces of our syndromes. I had an EEG, and another different study. I forget the article. I did post at the time. Dr Busis lifts the hood checks the engine, oil, checks the manuals, then puts his feet up on a table looks at everything and then talks with you. Miriam

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I don't think it's seizure related because i just had a 3 day veseize rule out seizers for me (wich I do not have :)) but I get the same thing you are describing. Especialy in stores and in places with a lot of movements and bright lights. It feels like my eyes are a split second behind and it makes feel dizzy and nausiated. I always thought I had anxiety, I am glad to hear its probably a pots thing!!

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