1. An awful feeling in my head that I call "distortion." I think it's connected with fatigue. It's not brainfog because I don't have any cognitive issues.
Re head "distortion": Here are some ways I've tried to describe it to doctors:
Headache (for lack of a better word) / head "fullness" /
head "distortion" / "sick with fatigue" feeling -- associated with
fatigue or P.E.M. / not clear-headed / "fuzzy" feeling / feeling
as head does with influenza
Re head "distortion": Here are some ways I've tried to describe it to doctors:
Headache (for lack of a better word) / head "fullness" /
head "distortion" / "sick with fatigue" feeling -- associated with
fatigue or P.E.M. / not clear-headed / "fuzzy" feeling / feeling
as head does with influenza
Looks like you have a handle on the description. Guess we can add it to the quickly growing 200 + other symptoms. Know it won't be the last. Long Covid doesn't discriminate. Lots to choose from. Plenty for everyone. Expecting all illnesses to be diagnosed as long covid related before long.
Re head "distortion": Here are some ways I've tried to describe it to doctors:
Headache (for lack of a better word) / head "fullness" /
head "distortion" / "sick with fatigue" feeling -- associated with
fatigue or P.E.M. / not clear-headed / "fuzzy" feeling / feeling
as head does with influenza
I think I have felt this “distortion” in the head before when I have been “sick” with other things, and I couldn’t put a name to it, either. The best I could explain it was that I felt like I had restless leg syndrome in my head, but if you’ve never had restless leg, it’s hard to understand THAT. It’s almost like someone is holding a feather right above your scalp and has every intention of tickling you with that feather … in about 4?months! Very weird sensation!
1. An awful feeling in my head that I call "distortion." I think it's connected with fatigue. It's not brainfog because I don't have any cognitive issues.
@roncovid you are the first post I’ve read after years of being on the blog to mention head distortion. I call it head sensation (lacking a better term). Difficult to describe, but across nearly 4 years of vaccine caused LC that is one of my leading symptoms. Years ago it would present itself instantly on waking or hours later but always happen. It feels like a numbness that affects your entire body. It’s not pain in the traditional sense (not like a headache). It’s my #1 or #2 most troublesome symptom because it affects my motivation to do things. I’m now being treated by Dr Bruce Patterson’s team. That combined with time (my guess) has me feeling better. Wish you well and a full recovery
Re head "distortion": Here are some ways I've tried to describe it to doctors:
Headache (for lack of a better word) / head "fullness" /
head "distortion" / "sick with fatigue" feeling -- associated with
fatigue or P.E.M. / not clear-headed / "fuzzy" feeling / feeling
as head does with influenza
Same - for me I get this along with a feeling of sinus pressure, exhaustion, sleepiness, slight dizziness - I'm pretty sure some of it in my case is chronic inflammation of nasal /sinus - as I always have post nasal drip now and "crunch" or popping in ears when I yawn..
Went to ENT and he said nothing was abnormal. I take allergy meds, but if I take too much I get even more sleepy, so I only take them at night.
1) Inflammation- originally this presented as pain all over my body, and extreme sinus pressure, headaches - Now I still have chronic headaches that come and go. Seems related to barometric pressure. Allergies that I had which are mild are way worse - small exposure to mold can give me my main wierd symptom:
2) Headache, which is always experienced as sinus pressure accompanied by severe sleepiness. If I take a nap for an hour, the sleepiness goes away but the headache remains.
3) Weird joint inflammation /pain that comes and goes. Can resemble RA wrists, fingers, elbows, shoulders and neck all can become painful. especially hard to sleep when shoulders are in pain.
@roncovid you are the first post I’ve read after years of being on the blog to mention head distortion. I call it head sensation (lacking a better term). Difficult to describe, but across nearly 4 years of vaccine caused LC that is one of my leading symptoms. Years ago it would present itself instantly on waking or hours later but always happen. It feels like a numbness that affects your entire body. It’s not pain in the traditional sense (not like a headache). It’s my #1 or #2 most troublesome symptom because it affects my motivation to do things. I’m now being treated by Dr Bruce Patterson’s team. That combined with time (my guess) has me feeling better. Wish you well and a full recovery
I have just had the blood drawn for Dr. Patterson's tests. It will be interesting to see how they categorize my illness.
One attribute of the distortion I get might be called sensory detachment or sensory disconnection. When the distortion is bad, I also often have dizziness or lightheadedness and I bump into things, drop things, etc. It's like I'm less aware of my surroundings.
Looks like you have a handle on the description. Guess we can add it to the quickly growing 200 + other symptoms. Know it won't be the last. Long Covid doesn't discriminate. Lots to choose from. Plenty for everyone. Expecting all illnesses to be diagnosed as long covid related before long.
In some of Dr. Patterson's talks (on YouTube), he says that "head fullness" is a common symptom of Long COVID. I wouldn't have labeled it "fullness" if I hadn't heard his term, but it might be that the "fullness" is what I call "distortion." Below are some of his comments that I transcribed:
[It won't let me post the link, but the YouTube ID is h2xyWiMS2Q0.]
Dr. Bruce Patterson, founder of IncellDx, in a presentation at
Georgetown University on Diagnosis and Treatment of Long
COVID, Feb. 2022 (at 35:30):
"The other thing is that the fractalkine receptor and binding
of non-classical monocytes results in angiogenesis through
VEGF, which of course we see in all four of these conditions
[Covid long-haulers, ME/CFS, Fibromyalgia, post-vaccination
long-haulers] and vasodilitation. Why is that so important?
Well, VASODILITATION RESULTS IN THIS HEAD FULLNESS THAT, I
WOULD SAY, 80 TO 90 PERCENT OF LONG-HAULERS TALK ABOUT. IT
CAUSES HEADACHES AND MIGRAINES. We think it causes brain fog,
tinnitus. It also causes, obviously, vasodilitation, hot/cold
insensitivity, low blood pressure which results in
compensatory heart rate increases. So you can account for a
lot of the symptoms in Covid long-haulers ... just by what
this interaction does on the endothelial walls. We call it in
a new paper, of course, "endothelitis," and of course we
intervene by using CCR5 antagonists, which prevent the
accumulation of these non-classical monocytes, and statins
which down-regulate the expression of fractalkine."
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Distortion is a new one to me. Hope you can get some clarity on that symptom. Good luck and best wishes.
Re head "distortion": Here are some ways I've tried to describe it to doctors:
Headache (for lack of a better word) / head "fullness" /
head "distortion" / "sick with fatigue" feeling -- associated with
fatigue or P.E.M. / not clear-headed / "fuzzy" feeling / feeling
as head does with influenza
-
Like -
Helpful -
Hug
5 ReactionsLooks like you have a handle on the description. Guess we can add it to the quickly growing 200 + other symptoms. Know it won't be the last. Long Covid doesn't discriminate. Lots to choose from. Plenty for everyone. Expecting all illnesses to be diagnosed as long covid related before long.
-
Like -
Helpful -
Hug
2 ReactionsI think I have felt this “distortion” in the head before when I have been “sick” with other things, and I couldn’t put a name to it, either. The best I could explain it was that I felt like I had restless leg syndrome in my head, but if you’ve never had restless leg, it’s hard to understand THAT. It’s almost like someone is holding a feather right above your scalp and has every intention of tickling you with that feather … in about 4?months! Very weird sensation!
-
Like -
Helpful -
Hug
3 Reactions@roncovid you are the first post I’ve read after years of being on the blog to mention head distortion. I call it head sensation (lacking a better term). Difficult to describe, but across nearly 4 years of vaccine caused LC that is one of my leading symptoms. Years ago it would present itself instantly on waking or hours later but always happen. It feels like a numbness that affects your entire body. It’s not pain in the traditional sense (not like a headache). It’s my #1 or #2 most troublesome symptom because it affects my motivation to do things. I’m now being treated by Dr Bruce Patterson’s team. That combined with time (my guess) has me feeling better. Wish you well and a full recovery
-
Like -
Helpful -
Hug
2 ReactionsShortness of breath, fatigue, and brain fog.
-
Like -
Helpful -
Hug
2 ReactionsSame - for me I get this along with a feeling of sinus pressure, exhaustion, sleepiness, slight dizziness - I'm pretty sure some of it in my case is chronic inflammation of nasal /sinus - as I always have post nasal drip now and "crunch" or popping in ears when I yawn..
Went to ENT and he said nothing was abnormal. I take allergy meds, but if I take too much I get even more sleepy, so I only take them at night.
-
Like -
Helpful -
Hug
2 Reactions1) Inflammation- originally this presented as pain all over my body, and extreme sinus pressure, headaches - Now I still have chronic headaches that come and go. Seems related to barometric pressure. Allergies that I had which are mild are way worse - small exposure to mold can give me my main wierd symptom:
2) Headache, which is always experienced as sinus pressure accompanied by severe sleepiness. If I take a nap for an hour, the sleepiness goes away but the headache remains.
3) Weird joint inflammation /pain that comes and goes. Can resemble RA wrists, fingers, elbows, shoulders and neck all can become painful. especially hard to sleep when shoulders are in pain.
-
Like -
Helpful -
Hug
2 ReactionsI have just had the blood drawn for Dr. Patterson's tests. It will be interesting to see how they categorize my illness.
One attribute of the distortion I get might be called sensory detachment or sensory disconnection. When the distortion is bad, I also often have dizziness or lightheadedness and I bump into things, drop things, etc. It's like I'm less aware of my surroundings.
-
Like -
Helpful -
Hug
2 ReactionsIn some of Dr. Patterson's talks (on YouTube), he says that "head fullness" is a common symptom of Long COVID. I wouldn't have labeled it "fullness" if I hadn't heard his term, but it might be that the "fullness" is what I call "distortion." Below are some of his comments that I transcribed:
[It won't let me post the link, but the YouTube ID is h2xyWiMS2Q0.]
Dr. Bruce Patterson, founder of IncellDx, in a presentation at
Georgetown University on Diagnosis and Treatment of Long
COVID, Feb. 2022 (at 35:30):
"The other thing is that the fractalkine receptor and binding
of non-classical monocytes results in angiogenesis through
VEGF, which of course we see in all four of these conditions
[Covid long-haulers, ME/CFS, Fibromyalgia, post-vaccination
long-haulers] and vasodilitation. Why is that so important?
Well, VASODILITATION RESULTS IN THIS HEAD FULLNESS THAT, I
WOULD SAY, 80 TO 90 PERCENT OF LONG-HAULERS TALK ABOUT. IT
CAUSES HEADACHES AND MIGRAINES. We think it causes brain fog,
tinnitus. It also causes, obviously, vasodilitation, hot/cold
insensitivity, low blood pressure which results in
compensatory heart rate increases. So you can account for a
lot of the symptoms in Covid long-haulers ... just by what
this interaction does on the endothelial walls. We call it in
a new paper, of course, "endothelitis," and of course we
intervene by using CCR5 antagonists, which prevent the
accumulation of these non-classical monocytes, and statins
which down-regulate the expression of fractalkine."