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Am I the only one?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Am I the only one suffering from distorted/blurry/dark vision and head pressure? It comes along with severe derealization and confusion/difficulty moving certain muscles.

I have other symptoms too such as; dry eyes, dry mouth and a swollen salivary gland, but the above symptoms are the most worrying.
 
Last edited:

Dmitri

Senior Member
Messages
219
Location
NYC
My headaches are constant and involve pressure/squeezing, especially in the occiput, temples and sinuses.

Blurred/dark vision combined with increased squeezing sensation in my head is how my orthostatic intolerance manifests, sometimes accompanied by a raise in blood pressure when I stand up.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
My headaches are constant and involve pressure/squeezing, especially in the occiput, temples and sinuses.

Blurred/dark vision combined with increased squeezing sensation in my head is how my orthostatic intolerance manifests, sometimes accompanied by a raise in blood pressure when I stand up.
Have you found anything effective at treating those symptoms?
 

Dmitri

Senior Member
Messages
219
Location
NYC
It's strongly connected to what goes on in my abdomen. Whenever I have burning pain and throbbing in my gut, I always get the head squeezing and sometimes the visual disturbances. I also get it from the tight muscles in the trapezius/neck, which can be aggravated by sleeping in a bad position or straining the neck. Both causes are somehow connected.

I haven't found a way to control it, unfortunately. This symptom goes through the roof during flare-ups.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
It's strongly connected to what goes on in my abdomen. Whenever I have burning pain and throbbing in my gut, I always get the head squeezing and sometimes the visual disturbances. I also get it from the tight muscles in the trapezius/neck, which can be aggravated by sleeping in a bad position or straining the neck. Both causes are somehow connected.

I haven't found a way to control it, unfortunately. This symptom goes through the roof during flare-ups.
Shit. At this point im wondering if we have the same damn thing, I relate to everything you just said. I honestly dont believe CFS is a real diagnosis, but just a wastebasket for lazy doctors.
 

lafarfelue

Senior Member
Messages
433
Location
Australia
@crypt0cu1t I can relate to both issues a bit but not to the extent that you seem to experience it at. Keeping super well hydrated (incl. increasing blood volume) has helped with neck and trapezius issues that feed into (referred?) pain through my crown and skull. I get weird neck cricks that I've never explored properly but I really need to soon.

Blurry vision happens most when I'm particularly worn down, so for me, that's just resting and keeping up on nutrition and fluids.

So... no real advice sorry; mainly wanted to say that I hope you can figure it out.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
@crypt0cu1t I can relate to both issues a bit but not to the extent that you seem to experience it at. Keeping super well hydrated (incl. increasing blood volume) has helped with neck and trapezius issues that feed into (referred?) pain through my crown and skull. I get weird neck cricks that I've never explored properly but I really need to soon.

Blurry vision happens most when I'm particularly worn down, so for me, that's just resting and keeping up on nutrition and fluids.

So... no real advice sorry; mainly wanted to say that I hope you can figure it out.
Well, thanks for the reply, Its good to know im not the only one who experiences distorted vision to an extent.

It literally looks like im looking through a TV screen or am constantly on some sort of acid trip.
 

pattismith

Senior Member
Messages
3,926
I had head pressure, brain fog, PEM, dry mouth, dry eyes, muscles problems, etc.

My head pressure resolved after I started taking T3.

My muscles and PEM problems need more than that to stabilize, I use prednisolone and caffeine.

No endocrino would have diagnosed me with a lack of hormons, as they are all in the normal ranges, but I can function with them.
So yes I agree with the lazy doctors.

TSH is not a marker of thyroid activity, it's only a marker of pituitary activity, so you can be hypothyroid with perfect TSH if you have a hypothalamus/pituitary axis problem.
fT3 and fT4 are not good markers as well because normal ranges include hypothyroid patients as "normal patients", and also needs can vary from one people to another. Etc...

Good doctors will treat you according to your symptoms, not your blood tests only, but they will do it outside of the medical consensus, which can be dangerous for them.

In my country, not any doctor will take such a risk.

Some evidences can show you are lacking T3 (I have both):

-low blood DHEA or pregnenolone
-hypercarotenemia
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California

Dakota15

Senior Member
Messages
292
Location
Midwest, USA
@crypt0cu1t Can I ask where you may get an upright MRI? I only ask because if I recall you also see Dr. Chheda - when I asked about ruling out Chiara, her one hesitation with the process was that "there aren't a lot of places in the country that know how to take an upright MRI accurately and that there are very few around the country that do it right". So it sounds like finding a speciality location to have this type of MRI administered is pretty important.

Feel free to DM if you'd prefer that route as well.

Thanks!
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
@crypt0cu1t Can I ask where you may get an upright MRI? I only ask because if I recall you also see Dr. Chheda - when I asked about ruling out Chiara, her one hesitation with the process was that "there aren't a lot of places in the country that know how to take an upright MRI accurately and that there are very few around the country that do it right". So it sounds like finding a speciality location to have this type of MRI administered is pretty important.

Feel free to DM if you'd prefer that route as well.

Thanks!
I am going to East Bay Upright MRI. Im waiting on insurance approval
 

lafarfelue

Senior Member
Messages
433
Location
Australia
Yup, that would be me!

Sorry if I've missed it in other threads, but have you been able to get a second opinion about the cyst and its effects on your system? You've asked the question about your dark/blurry/obscured vision here a number of times, which to me seems to indicate that you have particular concerns about it (esp. not part of 'common' ME/CFS symptoms). What does Dr Chheda say about the cyst? Can you get a referral to/appointment with someone else about it?
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
Sorry if I've missed it in other threads, but have you been able to get a second opinion about the cyst and its effects on your system? You've asked the question about your dark/blurry/obscured vision here a number of times, which to me seems to indicate that you have particular concerns about it (esp. not part of 'common' ME/CFS symptoms). What does Dr Chheda say about the cyst? Can you get a referral to/appointment with someone else about it?
She thinks it could be playing a big part in my illness, before she treats me with IVIG, she wants me to consult with dr Bolognese.
 

Dakota15

Senior Member
Messages
292
Location
Midwest, USA
@crypt0cu1t If you don't mind me asking, she wants you to consult with Dr. Bolognese before any imaging or after?

Also, you mentioned about waiting for the upright MRI to be covered by insurance, will the IVIG be covered by insurance?

Again, feel free to DM if anything is too personal - just also in similar shoes and trying to gather information.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
@crypt0cu1t If you don't mind me asking, she wants you to consult with Dr. Bolognese before any imaging or after?

Also, you mentioned about waiting for the upright MRI to be covered by insurance, will the IVIG be covered by insurance?

Again, feel free to DM if anything is too personal - just also in similar shoes and trying to gather information.
She wants me to get the imaging, then consult with him regarding my cyst to see if it needs to be removed, then afterwards she wants me to try IVIG. She thinks it will be covered due to the antibodies that i have (AChR binding)