Anyone else experiencing what I call head "awareness?"

Posted by allicatguy @allicatguy, Aug 17, 2022

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 Support Group.

@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.

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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!

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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.

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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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@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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With two Pfizer shots and one Pfizer booster I probably have COVID antibodies so testing for antibodies would not be conclusive whether or not I actually had COVID. Is there another test available to show whether I actually had COVID or not? My GP and neurologist didn't think so.

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@allicatguy

With two Pfizer shots and one Pfizer booster I probably have COVID antibodies so testing for antibodies would not be conclusive whether or not I actually had COVID. Is there another test available to show whether I actually had COVID or not? My GP and neurologist didn't think so.

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Yes. I did the antibodies test and the Covid nucleocapsid (I think that was the name) test. The nucleocapsid one for Covid came back negative showing that the high amount of antibodies I had after 4 months was due only to vaccine injections.

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@arubnitz

Yes. I did the antibodies test and the Covid nucleocapsid (I think that was the name) test. The nucleocapsid one for Covid came back negative showing that the high amount of antibodies I had after 4 months was due only to vaccine injections.

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Thank you for your reply...and the name of an alternate COVID test.

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@colleenyoung

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/

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Okay, Colleen...I give up. I'm trying to send you a private message...but when I follow the instructions how to do so in the Help Center I don't see the "send a private message" box. What am I doing wrong??!

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@allicatguy

Okay, Colleen...I give up. I'm trying to send you a private message...but when I follow the instructions how to do so in the Help Center I don't see the "send a private message" box. What am I doing wrong??!

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Allicatguy, You will be able to send a private message to a member in a few days. There is a brief period where new members can't send private messages. We do this to deter spammers from spamming community members by private message and keep the community safe.

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Interesting I didn’t know one could send a private message, thanks

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Update. After extensive scans, tests and examinations at Mayo Clinic's neurology and cardiology departments (not eligible for the Mayo long hauler COVID program) my head 'awareness', brain fog and lightheadedness persist. EVERYTHING turned out normal. (Though in the process they determined that a previously diagnosed 'syrinx' inside my spinal cord is now likely an astrocytoma...a non-operable but hopefully benign tumor. It's presently 'hibernating' and not considered a contributing factor to my long haul COVID symptoms.)

To say the least, like so many others of you, I am disappointed. I confided as much to the last doctor I saw at Mayo Clinic...a kind, considerate, soft spoken recently retired cardiologist called back part-time to help ease patient backlog. The doctor confided conspiratorially that the long haul COVID phenomenon is so new, so diverse/undefinable and so under-researched that the medical community is having a difficult time diagnosing it...much less treating it. The doctor said since the usually things all checked out my condition now falls under the realm of 'experimental medicine'. That is, treatment now consists of trying something to see if it helps. If it doesn't then trying something else until...hopefully...something works. Experimental medicine by definition I guess.

So , for now, it appears going forward means my internet guru (wife) and I will have to research or own treatment protocol and hope a sympathetic doctor will work with us for prescriptions.

Speaking of internet research my wife ran across an article published in November 2022 in Neuroimmunology Reports by Dr. Amy Arnsten, PhD and Dr. Arman Fesharaki-Zadeh, MD, PhD in collaboration with The Yale School of Medicine. In the article 8 of 12 participants in a small private study had significant relief of brain fog symptoms using the the drug combination of 1 mg of guanfacine at bedtime ( increasing to 2 mg after a month) plus 600 mg of N-acetylcysteine (NAC )once a day. Anyone tried this combination or know about it? The docs say both drugs have been around for years, are FDA approved, safe and readily available.

So that's my journey so far. Wish me luck and the same back to all of you fellow suffers.

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I haven't had that sensation yet, but I have severe on going fatigue and depression.
This virus is a very serious health threat and millions of us are suffering post Covid infection.
I have called my Congressional rep and senator to let them know that we need more public discussion re this public health scourge and more funding for research NOW.
I am also a senior citizen and vaxxed and boosted to the max. Did not help much!

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