Neuro Symptoms

[Carly87]

Since I've started my whole journey with dysautonomia, I've had some weird neurological symptoms. I'm pretty sure they are just part of the dysautonomia package, but I wanted to see if anyone else here experiences some of these things too.

When I'm particularly symptomatic and walking a lot...All of a sudden I'll stop walking and I look around and the ground and landscape around me seems to still be moving forward. I usually don't notice this too much unless I'm feeling really symptomatic. Is this a type of dizziness?

I also cannot, for the life of me, ride an elevator (even when I'm feeling good!) without having crazy amounts of dizziness! Not like vertigo, but I feel like the ground is just bouncing up and down after I get off. This can last for a few hours too! Not fun.

Something like this happened to me the other day, I went on a seesaw at the park and when I got off I felt like I was still on it, moving up and down.

I am also prone to more migraines. Although I've had them my entire life, I feel like I'm MUCH more sensitive to triggers now...ie the sun, if my blood sugar dips, stress, tiny amounts of alcohol etc.

I haven't checked any of these things out with a doctor specifically because they haven't really affected my life...Just weird things that happen when I'm not feeling that great! Can anyone else relate? I'm sure there are many more things I'm missing too...Feel free to add your own neuro symptoms that you get, I'm sure I've probably gotten em at some point too

[Ernie]

Hi,

I have all these weird symptoms. When I ride an elevator I have to sit on the floor to avoid fainting.

[Kathy_Ireland]

You are definitely not alone with these symptoms. For 5 years solid I felt I was constantly in an elevator.... even lying in bed I'd have those weird and sickening lurches and rushes where I felt I was actually bouncing out of my body. I'm also well used to the sensation of the world moving around me. In the first years of my illness I felt the ground was lurching beneath my feet and seemed squishy and unfirm...I felt like every step was like taking an unsteady leap on a bouncy castle that was mounted on one of those spinning rides in an amusement park.I was utterly disorientated and uncoordinated with it.

I always felt a bit crazy trying to describe it but I'm relieved to see someone else has had it too. I really hope you improve.

[LindaJoy]

This sounds bad, but I'm glad I'm not alone here. When my POTS is acting up, which it usually is, and I'm going for a walk, many times I watch the ground and it looks like it's what's moving, not me. I actually feel like I'm in one of those new age movies, where the lighting looks grayish-yellow and my eyes can't keep up with what's moving around. Weird.

And, elevators are not fun. After I get off, I still feel like I'm moving. I want to take BIG steps as I'm walking, like I'm stepping over fences.

I get dizzy a lot just by looking down. Bending over leaves me dizzy, too.

Dysautonomia does so many wonderful things to our bodies, doesn't it? Makes every day an adventure.

Lindajoy

[Kitsakatsa]

I think there must be alot that they cannot explain to us- things that are part of our reality. One thing that sounds a little like your walking thing (exertion) is that when I start a sentence outloud or start singing, everything grows dim and the world moves to the left in my vision. I've never brought it up to the doc. I mentioned it to my mom a while ago and she thought I should mention it. I don't know though. I don't think anyone could do anything about it. I thought it was just my own wierd little thing until I read your post.

[carinara]

I experience the same things as well. When iam on an elevator It also feels like the ground is just bouncing up and down after I get off. I experience the same symtoms when i get off an airplane. Sometimes it takes hours before it goes away. Some days its better and somedays ist worse with me.

By the way, before i got diagnosed last year, i went trough 10 years of severe health problems. At times i was bedridden for weeks. One day when i had a 'good' day, i promised my daughter to go to a amusement park with her, so i went on a roller coaster with her. This was a nightmare experience! It was like an elevator but 1000 times worse. Never ever would i do something like that again . Before i got real ill with POTS i loved them things, i even went bungie jumping and so on. But now

I even get dizzy driving a car.

There are also often times, when i dont know if Iam moving or if the things around me are moving. It seems as if it takes a long time before i can focus on the movements around me and my body system gets adjusted. This also happens when iam for example watch TV. If there are quick picture changes on the screen, i have to close my eyes otherwise i feel as if i fall over. Thats even worse in the cinema.

Sounds and smells make me feel dizzy as well.

I think this all happens because of our autonomic system being so sensitive. It just reacts to every tiny little thing.

carinara

[Carly87]

Thanks for the replies, I'm glad I'm not alone in all this! I've never talked to anyone who has shared these weird symptoms, so thank you for sharing!!

Carinara, I used to LOVE going on rollercoasters, and amusement park rides in general. I wouldn't even attempt it now. Sorry you had to go through that!

One thing that sounds a little like your walking thing (exertion) is that when I start a sentence outloud or start singing, everything grows dim and the world moves to the left in my vision.

This happens to me too, but not when I'm about to start talking. Usually when I'm staring off in to space I notice the walls or whatever moving up or down slightly. Hard to explain!!

Oh and all these posts have me worried about flying! I'm most likely going to be taking a long flight sometime within the next year...Oh boy.

[Carly87]

Sorry, double-post.

[carinara]

Sorry, i didnt want to worry you about flying! I just wrote that I experience the same kind of dizziness when iam flying, but that doesnt stop me from flying at all.

In fact, all the past years i had to fly a lot and because i didnt know what was wrong with me back then, i just thought it must be normal to feel like that after landing.

Now since i know about the POTS mechanism i at least have an explanation for all them weired symptoms. Iam sure you are going to be ok on your flight.

carinara

[ajw4790]

Hi,

I too can identify with a lot of what you described, I actually often think of it and describe it as that I feel like I am on an amusement park ride that is spinning etc and "I just want to get off the ride!" But, I am stuck on that ride. For myself I find it is mostly when I am symptomatic, overheated, having meds issues, tired, and most often a migraine.

So, because of it being migraine aura related, it maybe slightly different.

But, I have seen that with some of all these different conditions that the ocular muscles can be some of the first to respond to lack of O2 or BP issues or the muscles can become kinda weak etc with autonomic problems. (I am kinda fuzzy right now on how to describe it, other than it has made sense to me before... ).