Diagnoses: Nystagmus; Possible POTS; CFS; Fibro – Question Re: TEMPERATURE

[melsenger]

Hi, I am new here. Please note, my question is at the very bottom!! It has to do with temperature regulation.
I was just diagnosed at 32 with nystagmus which actually shares many symptoms with POTS (what I thought I had/maybe still think I do?). I am also concerned I may have Chiari. I had a modified tilt table whilst on Atenolol (Beta) and it was “borderline” at best. So, no POTS diagnosis as I had hoped (and expected). I feel I have MCAD but I need a doctor near Chicago, Illinois to be diagnosed with this and to determine how to control it. I have 2 brain tumors. 1 is 8mm on my pituitary. The other is a 1cm cyst on my pineal gland. I am unsure how they play into the issues I have. Here is a working list of things that I believe may come from nystagmus (I spoke with a woman whose son shares the exact same symptoms).
-extreme vertigo
-eyes having trouble scanning horizontally
-getting lost easily / trouble with directions (I’m terrible!)
-feeling of heart beating in ears
-migraine (ocular)
-sensory overload feeling
-inability to make eyes focus together on one thing for very long (which makes me close one eye quite often esp to read or be online)
-correcting yourself with how you hold yourself- for instance I cup my chin and tip my head up to keep it steady so that my head remains as still as possible
-balance issues and falls – I’ve been falling A LOT
-HEAT sensitivity as the sun tires the eyes and you have to strain so much more, prone to sun stroke
-light sensitivity – sunny days make us work a lot harder
-this kid also has inexplicable angry outbursts like I do despite trying many meds (the Mom is going to ask the specialist next month about this since we both have this symptom)
-some tachycardia
-floaters in vision, tunnel vision at night, blackening of vision
-the only time he really feels well is in the dark and laying down or sitting with eyes closed which is my go-to
-feeling like I’m on a boat after I lay down after a long day or like the world is spinning around me

Things that aren’t explained, which is what I’m hoping for SOME guidance on.
-the high blood pressure
-neck shoulder pain (Severe)
-numbness in extremities but especially hands and feet
-terrible brain fog / aphasia
-mild tinnitus in my ears (whooshing?)
-almost passing out when I bend over at the waist to pick something up and stand back up
-gastroparesis (intermittent, I think it’s an allergic reaction)
-pulse skyrocketing upon standing (though it only went up 20 with my “gentle” tilt table test)
-what I feel is norepi levels spiking or adrenaline being abnormally high
-MY CRAZY TEMPERATURE. This is a huge thing I’m inquiring about. When on a bad day, I can go from having a temp of 95 to 101. In the course of hours. Does this fit ANY of the illnesses ANYONE is familiar with here?

I have blood tests coming up ordered by a primary doctor so if there are any nutritional imbalances you think they should check for please suggest so I can add that to the list. So far it’s a basic CBC as I think Vit D and B12 are low. I feel disoriented much of the time and I don’t eat much due to the flare ups of gastroparesis.

Thank you if you’ve taken the time to read this.

Sincerely and in solidarity,
Melissa

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