What is behind these symptoms?

[wondrous]

Hi Everyone,

I posted to this forum in 2018 in an effort to troubleshoot the mechanism behind these strange symptoms I have, but even after all this time, I still have yet to find the mechanism behind them. My goal is to at least mitigate these symptoms, but I need to know the mechanism behind them first.

Please, anyone I welcome to take a guess as to what is directly behind these symptoms. You would make my life if I can figure this one out.

Here's what's going on:

In the morning, if I'm not showering, I'll simply put some water on my head from the faucet (to fix my hair) to look less like a bum. In the next hour after doing this, the following symptoms occur and last all day:

• Light Sensitivity - My eyes get extremely sensitive to any light. The Sun on a nice day nearly forces me to close my eyes.
• Gait/Balance Disturbed - I find myself veering to the left or right as I attempt to walk a straight line.
• Extreme Irritability - The smallest event feels like I could erupt into an extreme rage without self control
• Cognitive Decline - I'm not a genius by any means, but I could humbly say that I'm typically very quick witted, highly empathetic, and love to articulate complex thoughts in a general conversation. All of this goes out the door and I find it really hard to articulate my thoughts into words, and when I do, it's a chore. It feels as if I'm speaking these words for the first time, as I tend to stumble over them. I find myself having to think about what I should do in a situation as opposed to it being second nature. For example, approaching a green light, I literally have to think about what a green light means in my head and double check before I proceed through an intersection.

Something is going on in my brain after I put the smallest amount of water on it. Temperature of water, type of water, length of exposure to water -- all produce the same symptoms. Can you see why I've a rough time finding the mechanism?

What do you guys think is going on? Any guess or suggestion is a huge help. Just brainstorming here. Thank you!

 

[Judee]

I wonder if you're sensitive to chemicals in the water. I can smell the chloramines and chlorine so strongly in mine sometimes. I'm sitting in the diningroom right now but my kitchen sink is about 15 (guesstimate) feet away from me and there are times I can smell it sitting this far away.

And one city near me uses a lot of sulfur to purify their water. Whenever my Mom stayed in the hospital I stayed with her most of the time because she was chemical sensitive and also had a lot of medication/food sensitivities and they didn't always pay attention to the notes in her chart and would give her things she wasn't supposed to have.

Anyway, this one hospital had so much sulfur in their water it was in everything...the air, the sheets, just everything. My exposure from washing my hands and breathing the air and then sleeping on the pullout couch with their sheets, etc, made my skin feel like I had been smacked constantly. I couldn't get away from it but I had to stay with her. The saturation though was really awful.

When our medical group moved to a newer hospital north of there and I found out their air, etc was better, I was so relieved. No more smacked skin feeling.

The other thing is water purification. I've read sites and know someone who is so sensitive to coconut that she cannot have water filtered through a coconut charcoal filter.

I'm also sensitive to aluminum and nickel. Maybe you're reacting to the metals in the pipes. ???

Anyway, I hope you can figure it out.

 

[Tsukareta]

Maybe frontal lobe inhibition ? its just something I heard about recently and it seems to fit with things I experience often lately, do you get sensitive to noise like it upsets you ? sometimes I become very nostalgic during or after a crash and in PEM I feel suddenly defeatist / depressed and I start thinking about things differently, random things but its scattershot and unfocused. All of this is unusual for me though even during heavy PEM or crashes, I think its related to my ongoing mystery problem which I know involves Leaky Gut and dysfunction of BBB, possibly viral re-activation but that ones harder to get a handle on.

Someone actually published recently what they believe the mechanism for Light Sensitivity in ME/CFS is, might have been Prusty, sorry I can't be sure on that, I have the exact same problem as you with memory and words but it wasn't such an issue until recent years, I also sometimes have trouble trying to figure out how to get to somewhere, planning a route, say to somewhere on the other side of town, but my town is only about 1.5 miles across and I lived here almost all my life.

 

[Wishful]

Wet hair would produce cooling, which has effects on brain function. Maybe try drying your hair fully, immediately, or wear some insulating head covering to prevent cooling. As another experiment, try applying something cool to your head without getting it wet; maybe a sealed baggie of cool water, wrapped in a towel.

 

[wondrous]

I wonder if you're sensitive to chemicals in the water. I can smell the chloramines and chlorine so strongly in mine sometimes. I'm sitting in the diningroom right now but my kitchen sink is about 15 (guesstimate) feet away from me and there are times I can smell it sitting this far away.

And one city near me uses a lot of sulfur to purify their water. Whenever my Mom stayed in the hospital I stayed with her most of the time because she was chemical sensitive and also had a lot of medication/food sensitivities and they didn't always pay attention to the notes in her chart and would give her things she wasn't supposed to have.

Anyway, this one hospital had so much sulfur in their water it was in everything...the air, the sheets, just everything. My exposure from washing my hands and breathing the air and then sleeping on the pullout couch with their sheets, etc, made my skin feel like I had been smacked constantly. I couldn't get away from it but I had to stay with her. The saturation though was really awful.

When our medical group moved to a newer hospital north of there and I found out their air, etc was better, I was so relieved. No more smacked skin feeling.

The other thing is water purification. I've read sites and know someone who is so sensitive to coconut that she cannot have water filtered through a coconut charcoal filter.

I'm also sensitive to aluminum and nickel. Maybe you're reacting to the metals in the pipes. ???

Anyway, I hope you can figure it out.

Turns out that bottled water, along with rain hitting my head, will illicit the same reaction.

You'd think the easiest explanation would be chemicals and contaminants in the tap water, but then how do you explain bottled water and rain causing the same response?

Thanks for your contribution!

 

[Tsukareta]

Turns out that bottled water, along with rain hitting my head, will illicit the same reaction.

You'd think the easiest explanation would be chemicals and contaminants in the tap water, but then how do you explain bottled water and rain causing the same response?

Thanks for your contribution!

MCAS ? they are sometimes sensitive to sunlight and temperature changes. I don't believe I have MCAS though some of my odd symptoms like cysts, MGUS could fit with it. I think I actually do have some degree of histamine intolerance though because i've been trying dairy free low sugar chocolate and it gives me headaches and later irritability.

 

[Tammy]

My guess is brain inflammation from a virus making your central nervous system highly sensitive to different stimuli.

 

[hapl808]

Maybe frontal lobe inhibition ? its just something I heard about recently and it seems to fit with things I experience often lately, do you get sensitive to noise like it upsets you ? sometimes I become very nostalgic during or after a crash and in PEM I feel suddenly defeatist / depressed and I start thinking about things differently, random things but its scattershot and unfocused. All of this is unusual for me though even during heavy PEM or crashes, I think its related to my ongoing mystery problem which I know involves Leaky Gut and dysfunction of BBB, possibly viral re-activation but that ones harder to get a handle on.

All that sounds familiar, but of course the question is what to do about it.

 

[Dude]

Low quality information here: in the beginning of Prustys video from Stanford he mentions auto antibodies against something (cant recall) that makes the vision blurry and is responsible for the light sensetivity.

 

[Rufous McKinney]

I also sometimes have trouble trying to figure out how to get to somewhere, planning a route, say to somewhere on the other side of town, but my town is only about 1.5 miles across and I lived here almost all my life.

the compass and map inside our brains is in the hippocampus, I seem to be recalling (better check).

Thats super inflamed and I think its a huge problem: that organ is how we navigate.

I did field work in remote steep rugged mountains and never once got lost. Lost is not even allowed. I was extremely good at it. Mapping biologicals. Finding the exact tiny spot, all over again and not ever hiking on trails.

Now, I can't do that AT ALL. Its shocking. And I am recalling this panic attack I had, inside a state park, at dusk, and I could not figure out where Back was located. This was BEFORE I got so much worse. It was back when ALL THIS did not make sense.

 

[Wishful]

Finding the exact tiny spot, all over again and not ever hiking on trails.

In my woods (boreal forest/muskeg), I've often had no idea where I was, then I'd wander a bit further and find I was in a clearing I recognized, and my mental map reinitialized. I called that spot "Rome", as in "all roads lead to". Good spot for wild blueberries too.