With long COVID I had two different odd sensations in my head.
Bobblehead
“Bobblehead” is when my brain feels loose in my skull. It is not painful. I experienced this after overexertion and I was often able to relieve it by drinking electrolytes. This may be related to dehydration or low blood pressure. Read more
Wonky Head
What I call “wonky head” is a different sensation that is not relieved by electrolytes. Like bobblehead, it is not painful. My head is very full and head motion feels exaggerated. A small activity can start the sensation that lasts for the rest of the day. When I have this sensation, it’s hard to concentrate.
This wonky head feeling can be caused by:
- Lying down too long during the day.
- Using my hands and arms while they are raised above my head. For example, changing the light bulb of a ceiling light.
- Exercises lying on my back such as bridges or straight leg raises.
- Leaning over. For example filling the dog’s bowls.
Wonky head was a significant source of trouble with long COVID.
I thought this might be orthostatic intolerance, but every description of orthostatic intolerance I have seen is people lying down who stand up and then feel bad. I would feel good standing up, but lying down for too long would make me feel bad. I gave myself the NASA 10 Minute Lean Test and it did not show significant changes in my blood pressure, heart rate, or how I felt. Orthostatic intolerance is when blood leaves the brain. Maybe this is the opposite because all those motions cause blood to flow to my brain?
I theorize that my first round of physical therapy was such a disaster because they started me with supine exercises (lying on my back). For people with orthostatic intolerance, this is easier, but for me the exercises induced symptoms quickly.
Fixing My Wonky Head
I had two interventions going at the same time that might have fixed my wonky head.
First, I was going to acupuncture once a week. In Chinese medicine, strange head sensations like this can be related to phlegm. I had been battling congestion in my chest for months. The acupuncturist inserted needles to help with my wonky head and also gave me herbs to clear my chest congestion. Read more
Around the same time I was doing exercises from Mt Sinai autonomic rehabilitation protocol. The protocol calls for 30 seconds of exercise followed by 2-3 minutes of rest. I would rest by sitting up because continuing to lie down made me feel worse. At the beginning, my head symptom would persist for the full 3 minutes. More than once I had to stop because my symptoms did not resolve within 5 minutes.
Over a few weeks my head started recovering more quickly between exercises, to the point I was ready for the next exercise almost immediately. I never even needed the seated or standing exercises.
One day I was just coming out of a one week rest from a crash. The dog was very hot and needed grooming, so I decided I would just try, breaking the task in 15 minute chunks. I felt fine during the grooming, even though I was moving my head all around. I have not had any post-exertional malaise (PEM) crashes since that day. It’s not clear to me if my wonky head caused PEM, if PEM caused my wonky head, or if they are unrelated.
Conclusion
Do you have a name for this symptom? I have not been able to name it.
Many people with long COVID have orthostatic intolerance, so I have read many suggestions to lie down more or lie down and raise your legs. Because the physical therapy protocols are based on POTS, the exercises start supine. During physical therapy there was an expectation that the supine exercises would be easy for me to tolerate, but that was definitely not the case for me.
Maybe helping me tolerate movements when lying down helped me recover?