Weird Consciousness Issues & Dysautonomia - Normal?

[Mikey69]

Hi all,

Yet another question i'm afraid. But i think i already know the answer (YES!!!)

For the past 18 months ive been experiencing weird changes in consciousness that occur at any time and present in different ways. I'll do my best to describe them. I'm guessing this is a symptom of Dysautonomia?

I definitely get them when i don't eat - and we have established that i have eating/hypo issue, that i'm now working on controlling - so thanks all for your kind imput. :-)

Sometimes these symptoms are like mini short 'shifts' in consciousness. It's like the world (or i?) have suddently just moved quickly. it happened several times this afternoon. It's like the world suddenly shifts a tiny amount, it only lasts a second or two, but it's very disorientating. I'm sure my head was still at the time, but perhaps it wasn't, and this occurred because i moved my head? Either way, it's like the whole world suddenly moved a little. It's a sudden 'jarring' sensation. It's very disconcerting when it happens.

I frequently feel like i'm a bit 'detached' from the rest of the world, It's like i'm seperate from the world, perhaps viewing from behind an invisible screen?

i also frequently feel like i've taken some kind of mind-bending drug? Feelings of being dizzy, dazed, spaced out, woolly headed, disorientated, etc. THis can be mild or can become very severe. If moderate/severe i don't feel safe to be out on my own.

All of this would be ok if it wasn't for the fact that i HATE consciousness disturbances. I NEVER get drunk or take mind bending drugs because i value my 'standard' consciousness too much.

I can alo get the whole lot at once, which is very unpleasant. I really don't feel safe to be out when this happens.

I've also discovered that both my varifocal glasses and contact lenses can be problematic. Especially the glasses. At times, it's like i have the wrong strength glasses - sometimes everything closeby seems to be over-magnified/enlarged, whilst distance objects are fine. Other times, it's like my vision seems a little blurred, even with my glasses on. This messes with my visual/spcial perception, which makes me feel a little disorientated at first, and fairly disorientated after a while. I am fine driving/walking shorter journeys/distanes, but longer trips are an issue. i tend to have fewer problems with my contact lenses, it's generally just a bit blurrier than it should be. I know that it's normal to have slowed pupillary responses with Dysautonomia, so im guessing this is the problem? Do others have problems with glasses/contact lenses?

I rarely go outdoors at the moment because these symptoms can quickly become overwhelming and i feel unsafe.

THis is crazy because just a few months ago i was driving long distance, fell walking, training, flying model aircraft, etc. I'm going stair crazy at the moment!!! :-/

Does everyone experience weird consciousness/eyesight symptoms?

Thanks in advance,

Mike :-)

[outofadream]

Hey Mike, for what it’s worth, I’ve had almost exactly the same experiences you’re describing. Sometimes it feels (or even looks) like things are shifting around slightly, definitely had the disconnected from the world one (I REALLY hate that one), and the disoriented/spaced out issues. I haven’t noticed issues with my glasses or contact lenses, but particularly if I’m on my feet too long, I get disturbances something like you describe…sometimes seems like looking through a fish eye lens, where everything is slightly “bent” or things look further away than they are, like I’ve suddenly grown a foot or two. Definitely disconcerting!

I get that slightly blurry vision too, and pretty sure it’s tied with the pupillary dysfunction for me, because if look in a mirror, can sometimes SEE my pupils are bigger than usual.

I hear you, I’m the kind of person who hates stuff messing with my mind too (refused to get drunk or take drugs either, for about the same reason…everyone in college thought I was very boring, haha). I still find those symptoms some of the hardest to live with, because nothing ever feels or seems quite right when they’re happening, and that can be SO unsettling. It can get very painful and isolating too feeling like you’re living in some alternate reality from everyone else, when that disconnection is being particularly nasty.

For what it’s worth, though, I do think these issues have gotten at least somewhat better for me over time. One thing I found helped was to do what it sounds like you’re doing right now, keeping an eye out for what triggers them. I find that as I learn more about what situations they happened in, they become somewhat less unpredictable (it's really hard when they're pulling unexpected sneak attacks all the time, and you have absolutely no clue why). Also, that helped me figure out what to do for some of them..for example, found it helped to rest and lie back if the blurry vision was getting really bad, and found that being on my feet in shorter intervals with rests in between would ease the disorientation and weird visual stuff some of the time.

Everyone’s different, but I also found it helped to strike a balance where I eased back into doing some of the things I was uneasy about, but in VERY small doses. I had that same trouble where it was so disorienting and overwhelming to go outside too. I found it helped to encourage myself to go out for very short amounts of time, letting myself rest and go back in where I felt safe when I needed to. But over time, it seemed like the gentle exposure actually helped, like my body and brain started to adapt in a way, and the issues became less intrusive. It also really helped to have people around who could help when I was getting really out of it and disoriented, so I didn’t have to worry about whether I could make it back home. Again, everyone’s different, and hopefully others will have more insight about their experiences, and how they cope with or treated these issues, but hang in there…you’re definitely not alone!

[Mikey69]

Hi There OutofaDream,

it's a pleasure to meet you. Thank you so very much for writing such a detailled and descriptive response - It's worth a lot! it means a great deal to me :-) YOur efforts really are appreciated.

Sounds like you and i are very similar in many respects with regards to the rugs/alcohol thing. I HATE anything that messes with my consciousness - apart from sleep of course, but sadly sleep eludes me at the moment. I'm sure 65 nights of insomnia won't help with all the weird consciousness issues though. It's also playing havoc with my formerlly healthy blood pressure :-(

I am really struggling to come to terms with the impact these dysautonomia symptoms are having on my life. There's just so much i don't understand, so many different symptoms, affecting so many different parts of my body.

I've actually been very ill since the age of 13 with severe Fibromyalgia and things got much worse in my early 20's when i got CFS/ME. It was devestating at the time, but i got over it, rebuilt my life, adapted, etc. I learnt everything i could about both conditions and got myself as well and active as i could be.

I knew my body very well, until some 20 months ago, which is when this crazy Dysautonomia roller coaser ride began. Now i feel like i don't know my body at all.

I've never been unneved by symptoms before this - and things were very bad for me for 2 years at one point, i've also never been concerned for my well-being, or my future, but this has really changed everything. I have lost so much confidence when outdoors for example (because i have been at the point of collapse so many times). I'm working on it - pushing myself, etc. But i never know how i am going to feel from one minute to the next - so it's always a risk.

THe insomnia is also making me tearful at times - what the heck? I NEVER get upset - life's too short for that! Added to that is the fact that i'm now housebound much of the time makes an outdoors person like me a very sad and frustrated little bunny!

I know i'll get through this somehow, just not sure how yet! But gotta keep fighting! :-)

THanks again,

Mike :-)

[statesof]

Hey Mike, thought I'd share a bit of my experience since some of the symptoms are comparable to yours as well as outofadream's. I have POTS, but I also have migraine with aura, and something called deprrsonalization disorder. I do tie some of my visual/ perceptual symptoms to each of these specific disorders, however there is also some overlap where I don't know which symptoms are cause by which disorder since their all brain related. Here's some of my symypoms:

Deprrsonalization disorder: the visual experience of my life looks as though I'm watching it as if it were a movie, there is a feeling of "detachment" and not being in the moment like I'm walking in a constant cloud. Also, and this symptoms better now, the world will like kind of daydream/ picture like, I used to get sort of Alice and wonderland like perceptual changes when going to new places, accompanied my major brain fog. Other times if I'm in a crowded place or a place with brigh lights it can feel mentally disorienting and it seems like when people walk by they kind of blur together like when you look out the window while driving (hard to explain).

Migraine - I'll get those like you said quick moments where I feel like either the floor is moving under my feet, or suddenly the world feels like it tilts on its side quickly, I've also had strong vertigo hit me quite quickly and heavily leaving me disoriented for a few days, it's like you get the sudden tumbling over sensation in your brain even though you are sitting still.

POTS - sometimes my visual perception will get this hazy feel to it as though I'm seeing through a fog, it's pretty difficult to push through depending on the situations but I notice this can easily be brought on by walking to far or over exerting myself in the limited capacity I still can.

Other symptoms that I see as somewhat related are I have a harder time visually going from very light to dark, like it takes my eyes longer to adjust. My visual system is also very sensitive to changes so i don't wear glasses but if I look through a camera lense only for a few seconds my vision can feel off for 10-15 minutes afterwards, and I get after images a lot and flashes of lights can cause after images that stick around in my vision for a while.

[bigtrouble]

Other symptoms that I see as somewhat related are I have a harder time visually going from very light to dark, like it takes my eyes longer to adjust. My visual system is also very sensitive to changes so i don't wear glasses but if I look through a camera lense only for a few seconds my vision can feel off for 10-15 minutes afterwards, and I get after images a lot and flashes of lights can cause after images that stick around in my vision for a while.

Yes, I have this problem as well. I think it is called persistence of vision. If I look at blue light, it is like the blue cones are still firing when I look away. It can take 5 min to clear. Bright lights are a problem.

When I was much younger, I remember how fast my vision would restore itself. It was something like 5 to 10 sec.

Anyway, this is a symptom I can live with.

The dizziness, nausea, chest pain, chest vibrations, feeling weird is hard to deal with and it effect my work and quality of life. I would describe it as ****.

Luckily, I haven't had blurred vision issues. I wear glasses all the time.

[Dr. Rob]

Hi Mike!

I also had numerous daily brain fog/altered mentation for quite some time that started several years ago and then became seriously out of control for about 3 months. Have not had now for quite sometime. The key for me was having comprehensive gluetin/gliadin testing and cross reactivity. Turns out I was positive for Gluteomorphin + Prodynorphin IgG & IgA. After I eliminated ALL gluten, which means ALL processed foods it diminished then disappeared completely and then has not returned since. I also found following the Levine Exercise protocol very helpful at clearing my head which made me significantly more confident about traveling alone. My eyesight unfortunately did degrade and has not returned. Biofeedback therapy has gotten me back to about 90% of my recovery base prior to pre-competition.

All the Best in Health & Wellness!

Dr. Rob