Joyce Goff
What was your life like before you received the COVID-19 vaccine?
Active, normal. Working full-time, reading, hiking, biking, swimming, spending time with family and friends.
Describe the symptoms and the timeline of the reaction.
12-27-2020: Headache within hours of the vaccine that persisted. I noticed a visual tasks increased my headache. Very poor sleep despite good sleep hygiene.
Early January 2021: Tachycardia, heart racing
March 2021: orthostatic hypotension with position changes, elevated heart rate with position changes, shortness of breath, exercise intolerance, extreme fatigue with little effort
May 2021; diagnosed with inappropriate sinus tachycardia
May 2021: diagnosed with double vision
Summer/early fall: developed extreme fatigue, numbness and tingling in my legs and feet, sometimes hands. Increased sensitivity to overhead lights and screens, oncoming traffic lights
Sept 2021: joint pain, worsening tingling, numbness
Sept 2021: diagnosed with somatic symptom disorder (despite having been seen at my request to address any anxiety--most of which came from no one believing this was caused by the vaccine)
March 2022: optometry diagnosed no fusional reserve
April 2022: rehab vision specialist: likely cranial nerve 6 involvement, right eye weakness, alpha Omega pupil (and more)
March 2022: As I can do slowly do more, I notice if I put any 'elbow grease' into anything--walk up a hill too fast, for example, my lungs feel okay in the moment, but will burn for a few days. Same if I overdo it with activity that gets me breathing even a little hard
And still with fatigue after normal activities-slowly improving
Describe the solutions that helped your symptoms
Physical therapy: cranial sacral, strain counterstain, Barral techniques
Chiropractic care with functional neurology specialty
Functional medicine: gut healing, aminos, vit B, NAC, ubiquinol, and others
Rose tint #2 glasses have helped decrease headaches from light sensitivity
Filters in lights in my office at work, filters on computer screens, and filter on my phone help with light sensitivity.
Vision rehab therapy
Mindfulness and CAM
Rest--I worked part time over the summer and then off on FMLA for 2.5 to 3 months.
Which solutions were not helpful?
Migraine medications, anti-inflammatory medication, allergy medications, aspirin, Tylenol, muscle relaxers, gabapentin--nothing helped. I stopped trying medication around March 2021. I only take supplements now
Exercise made me worse
Compression stockings or abdominal binder made me feel sick
Massage made me feel sick (I usually love massage)
Providers telling me my symptoms were due to anxiety was not helpful. I fully understand how anxiety can worsen or lead to somatic symptoms. What I have is different. I have great strategies for managing anxiety-and I initiated getting help for that very early.
What would you like others to know?
I am NOT an anti-vaxxer. I've been a clinician for twenty years, I was a soldier over six years, so I've had plenty of vaccines.
With any medication, some of us are going to draw the short straw--and we need the medical community to believe us and treat our symptoms. If I didn't have a healthcare background, I would not have received the care I did-- and I have had to persist to get it!!
I want my life back. I'm back to work-barely. I want to be able to read novels and research, I want to hike more (I can do some,), I want to exercise hard and not have extreme fatigue or fiery lungs for days after.
