Anyone else experiencing what I call head "awareness?"

Posted by allicatguy @allicatguy, Aug 17 6:19pm

I'm 73 with 2 Pfizer COVID shots and one Pfizer booster before this condition started. Had it now for 9 months…sudden onset 11/10/2021. Fever, chills, brain fog, fatigue, bad nasal drainage…nothing into chest. No loss of smell or taste. Five days after first symptoms was finally able to get into clinic for COVID test…negative. Was affected for nearly 3 weeks before nasal issues diminished. Brain fog, concentration, balance issues, fatigue continued along with the newly recognized head 'awareness' or 'sensation.' Many of the symptoms of long haul COVID or chronic fatigue syndrome. I've had numerous blood test, seen neurologist, had a brain MRI. No indications of the cause.

Sensation covers the area of the head roughly outlined by an old fashioned lady's swim cap with a chin strap. It's not a pain, a pressure or a tension; it's just an unending, irritating…sensation. It is aggravated by concentration, physical activity, bright light and alcohol on the rare occasion when I imbibe.

The docs don't seem to have a clue what's causing it. The neurologist put me on the pain med, Gabapentin (600MG 1x/day), for possible nerve pain. Hasn't helped.

Any of you folks experiencing this?? It's about driving me crazy.

P.S. I mistakenly posted this on the "Just Want to Talk" group first.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 group.

Had it now for 9 months…sudden onset 11/10/2021. Fever, chills, brain fog, fatigue, bad nasal drainage…nothing into chest. No loss of smell or taste. Five days after first symptom was finally able to get into clinic for COVID test….negative. Was affected for nearly 3 weeks before nasal issues diminished. Brain fog, concentration, balance issues, fatigue continued along with the newly recognized head 'awareness' or 'sensation.' Many of the symptoms of long haul COVID or chronic fatigue syndrome. I've had numerous blood tests, seen neurologist, had brain MRI. No indications of the cause.

Sensation covers the area of the head roughly outlined by an old fashioned lady's swim cap with a chin strap. It's not a pain, a pressure or a tension; it's just an unending, irritating….sensation. It is aggravated by concentration, physical activity, bright light and alcohol on the rare occasion when I imbibe.

The docs don't seem to have a clue what's causing it. The neurologist put me on the pain med, Gabapentin (600MG 1x/day) for possible nerve pain. Hasn't helped.

Any of you folks experiencing this?? It' about driving me crazy.

REPLY

Welcome @allicatguy. Your symptoms sound very much like long Covid.
"A negative COVID-19 test means the test did not detect the virus, but this doesn’t rule out that you could have (had) an infection." (Source https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/testing.html)

This is a dilemna that other long haulers have faced too like @cathusa @ameed @otter2154 @bbartolotto @otter2154 and others
See this related discussion:
– COVID test negative: How can I be sure my symptoms are long COVID? https://connect.mayoclinic.org/discussion/do-covid-long-haulers-test-neg-or-pos/

Did you have the PCR test? Did you retest?

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Same – 2 Pfizer shots plus Pfizer booster – booster derailed me and also at 9 months post. I have that weird head stuff – not a pain or headache but a buzzing and burning sensation? It doesn’t go away with Advil/Tylenol. I think it gets worse with extra stimuli. What has helped me is ice packs – on the back of the head/neck and on the face. Put an eye mask on to block out light and movement for a bit while icing or resting. All my basic tests are normal too. Functional med doctor said the vaccines activated dormant viruses and he is working with me to calm down all the activated nerve endings.

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@colleenyoung

Welcome @allicatguy. Your symptoms sound very much like long Covid.
"A negative COVID-19 test means the test did not detect the virus, but this doesn’t rule out that you could have (had) an infection." (Source https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/testing.html)

This is a dilemna that other long haulers have faced too like @cathusa @ameed @otter2154 @bbartolotto @otter2154 and others
See this related discussion:
– COVID test negative: How can I be sure my symptoms are long COVID? https://connect.mayoclinic.org/discussion/do-covid-long-haulers-test-neg-or-pos/

Did you have the PCR test? Did you retest?

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Hi…and thanks for responding. I looked back in my medical records and the test I had was a Transcription Medicated Amplification (TMA). According to the paperwork this test, according to the CDC, is equivalent to a PCA test. No, I did not get a second test. Doc was satisfied with first test results.

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@arubnitz

Same – 2 Pfizer shots plus Pfizer booster – booster derailed me and also at 9 months post. I have that weird head stuff – not a pain or headache but a buzzing and burning sensation? It doesn’t go away with Advil/Tylenol. I think it gets worse with extra stimuli. What has helped me is ice packs – on the back of the head/neck and on the face. Put an eye mask on to block out light and movement for a bit while icing or resting. All my basic tests are normal too. Functional med doctor said the vaccines activated dormant viruses and he is working with me to calm down all the activated nerve endings.

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Hi…and thanks for sharing your experience. At least now I know I'm not alone. You are fortunate to have a doc willing to acknowledge your symptoms and offer a possible explanation for them. I get the impression sometimes from the docs that my symptoms are "all in my head." Like you OTC pain drugs don't have any effect. Haven't thought of/tried the ice pack idea. Will have to give it a try. Best wishes for success in achieving relief from your "torment."

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@allicatguy

Hi…and thanks for sharing your experience. At least now I know I'm not alone. You are fortunate to have a doc willing to acknowledge your symptoms and offer a possible explanation for them. I get the impression sometimes from the docs that my symptoms are "all in my head." Like you OTC pain drugs don't have any effect. Haven't thought of/tried the ice pack idea. Will have to give it a try. Best wishes for success in achieving relief from your "torment."

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Hang in there. You are def not alone! There are many of us out there. You can look for a functional med doc/naturopath. Ask around. Electrolytes have also helped a ton – keep hydrated. Hugs.

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@allicatguy

Hi…and thanks for responding. I looked back in my medical records and the test I had was a Transcription Medicated Amplification (TMA). According to the paperwork this test, according to the CDC, is equivalent to a PCA test. No, I did not get a second test. Doc was satisfied with first test results.

Jump to this post

Allicatguy, I thought you might also be interested in this related discussion
– Can Mayo help with undiagnosed fatigue and brain fog? https://connect.mayoclinic.org/discussion/can-mayo-help-with-undiagnosed-fatigue-and-brain-fog/

REPLY
@arubnitz

Same – 2 Pfizer shots plus Pfizer booster – booster derailed me and also at 9 months post. I have that weird head stuff – not a pain or headache but a buzzing and burning sensation? It doesn’t go away with Advil/Tylenol. I think it gets worse with extra stimuli. What has helped me is ice packs – on the back of the head/neck and on the face. Put an eye mask on to block out light and movement for a bit while icing or resting. All my basic tests are normal too. Functional med doctor said the vaccines activated dormant viruses and he is working with me to calm down all the activated nerve endings.

Jump to this post

Pfizer booster also did me in. I wish there was more help out there for folx with adverse vaccine reactions. I’m seeing a functional PA and really hoping we can spin the clock back!

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@jlkdaggett

Pfizer booster also did me in. I wish there was more help out there for folx with adverse vaccine reactions. I’m seeing a functional PA and really hoping we can spin the clock back!

Jump to this post

I just want to go back to ‘normal’. For me – the ping ponging of my nervous system is frustrating. I think symptoms are decreasing or gone and then they pop up again. But at least I can function and live almost fully again right now – grateful for that. This is a long challenging journey that others cannot comprehend.

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@arubnitz

I just want to go back to ‘normal’. For me – the ping ponging of my nervous system is frustrating. I think symptoms are decreasing or gone and then they pop up again. But at least I can function and live almost fully again right now – grateful for that. This is a long challenging journey that others cannot comprehend.

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I agree with you- forward is so non linear which makes it so mentally challenging. Just when you think it might be lifting some other system flares! I’m with you… we can do this. Spiraling forward …

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@allicatguy

Had it now for 9 months…sudden onset 11/10/2021. Fever, chills, brain fog, fatigue, bad nasal drainage…nothing into chest. No loss of smell or taste. Five days after first symptom was finally able to get into clinic for COVID test….negative. Was affected for nearly 3 weeks before nasal issues diminished. Brain fog, concentration, balance issues, fatigue continued along with the newly recognized head 'awareness' or 'sensation.' Many of the symptoms of long haul COVID or chronic fatigue syndrome. I've had numerous blood tests, seen neurologist, had brain MRI. No indications of the cause.

Sensation covers the area of the head roughly outlined by an old fashioned lady's swim cap with a chin strap. It's not a pain, a pressure or a tension; it's just an unending, irritating….sensation. It is aggravated by concentration, physical activity, bright light and alcohol on the rare occasion when I imbibe.

The docs don't seem to have a clue what's causing it. The neurologist put me on the pain med, Gabapentin (600MG 1x/day) for possible nerve pain. Hasn't helped.

Any of you folks experiencing this?? It' about driving me crazy.

Jump to this post

I too have had weird sensations in my head since my Pfizer vaccine. I had Covid in July 2020. Mine is like pressure across the top front of my head with a pulsing from my head to my right eye. Not painful just concerning. No answers from the neurologist or any of the multitude of doctors I have seen at both the Cleveland Clinic and Mayo in Scottsdale. Gabapentin prescribed but no help. The latest diagnosis was anxiety but he didn’t prescribe because I told him I didn’t want to take any more drugs.
I also have spontaneous bruising on my arms and legs and thought that I had some kind of vascular issue but that was ruled out.
Very frustrating!

REPLY
@allicatguy

Had it now for 9 months…sudden onset 11/10/2021. Fever, chills, brain fog, fatigue, bad nasal drainage…nothing into chest. No loss of smell or taste. Five days after first symptom was finally able to get into clinic for COVID test….negative. Was affected for nearly 3 weeks before nasal issues diminished. Brain fog, concentration, balance issues, fatigue continued along with the newly recognized head 'awareness' or 'sensation.' Many of the symptoms of long haul COVID or chronic fatigue syndrome. I've had numerous blood tests, seen neurologist, had brain MRI. No indications of the cause.

Sensation covers the area of the head roughly outlined by an old fashioned lady's swim cap with a chin strap. It's not a pain, a pressure or a tension; it's just an unending, irritating….sensation. It is aggravated by concentration, physical activity, bright light and alcohol on the rare occasion when I imbibe.

The docs don't seem to have a clue what's causing it. The neurologist put me on the pain med, Gabapentin (600MG 1x/day) for possible nerve pain. Hasn't helped.

Any of you folks experiencing this?? It' about driving me crazy.

Jump to this post

I had the start of unusual symptom safer a vaccination in 4-21, but I had covid a year earlier. I would have never thought of long covid but of tha and symptons that seemed to be manifested by inflammation, including symptoms like TMJ when I neve had it before. Now the worde sympoms are in the tingling, itchiness and numbness in my hands, arms and head. But also pressure headaches…

So the awareness you mention I can' relate to beyond that my head issues really are becoming a quality of life issue. I got a feeling it is immunosuppressive related as tests come in negative. I have a MRI on my spine and neck coming up as that has to be ruled out and some of my symptoms suggest something being pinched. Thing is, long covid etc. all fall into that category of symptoms that are not understood in terms of a cause. I have a friend who continues to deal with post covid and I can relate, not because I necessarily am suffering from it (maybe from the vaccine?) but because I know what it is like to live with something chronic and just try to push on with the help of just a few people as I do not feel like constantly sharing it . But just hope to get help enough to manage. BTW, I think long covid represents the major health concern now in terms of the medical industry's focus. Think more articles and focus would be helpful. Yes it is not as acute as covid was, but the chronic nature is real and really impacts people.

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