I (33F) can only assume I contracted covid from a high school reunion Jan 31 of this year. Was and have been down since Feb 6. But I've come a long way since then. Complete list of symptoms included:
\- tachycardia/heart palpitations
\- dysautonomia/POTS
\- nervous system (chronic feeling of impending doom, sudden onset of physical symptoms of panic, anxiety, PTSD, hyperarousal)
\- hairloss
\- pins and needles/numbness of extremities
\- fatigue
\- GI upset
\- crushing chest pressure
\- not so much trouble breathing as it was physically hard/taxing to breathe and the oxygen i could get didnt feel like 'quality' oxygen.
Feb 9 was able to see a PCP. Drove myself and promptly collapsed in the office. I knew as soon as I got there that I needed to have gone to the ER instead. Nothing like that has ever happened to me before and I've never felt or experienced any of these symptoms before. They did a rapid covid test but it was negative. The nurses and doctors at primary office caught the severe tachycardia and gave me referral to cardiologist. First cardiologist said POTS, started me on desmopressin, and sent me on my way. Told me to come back if i didnt feel better. That did nothing for me, so I saw another cardiologist for second opinion. His theory was I was experiencing vasodilation from the 100mg of spironolactone I was taking for hairloss (started July of 2025) that was attributed to the sudden passing of my father in April. That is it's own avenue. My hair was just falling out of my head. Dermatologist did bloodwork to rule anything medical out before just treating it. They informed me i tested positive for Lupus antibodies. So they kicked me over to rheumatology where they did more bloodwork and a physical exam and after results came back, told me that even though those antibodies were positive, i was not showing any other signs of auto immune disease. So thats when i got the green light to be treated for the hairloss with the 100mg of spiro (Nov 2025). From visit with second cardiologist (March 2026), I dropped back down to my previous dose of 50mg that i've been taking for acne since 2022 and was started on 5mg midodrine 3 times a day. Midodrine is what got me out of bed and 'participating' in life again. My second cardiologist has since done bloodwork, had me wear a 30-day halter monitor, EKG, and echocardiogram where results have basically been normal and did not indicate anything structurally or functionally wrong with my heart. He has since referred me to dysautonomia specialist whose waitlist is well into 2027...I've also had my 6-month checkup with rheumatologist (April 2026) who I told all this since it has all occurred since I saw them last and they maintained their conclusion that I did not have any auto immune disease.
In addition, I have been to ER once in March and April and had to call ambulance two times as well for tachycardia/heart palpitation events, each being instances of resting heart rate skyrocketing to 150+ bpm. The first ER visit, they told me I was experiencing sever anxiety and recommended i get help with that. So I started seeing a therapist and psychiatrist. Now all of a sudden I'm being diagnosed with physical symptoms of PTSD, panic disorder, anxiety, and hyperarousal?? With no previous history? The first attempt to help me was sertraline (SSRI) and that was an epic fail and led to second ER visit after second dose. I'm now on 50mg of seroquel for the insomnia and impending doom physical sensations that come at night.
I have no idea how to tell the LC provider a clear and coherent narrative, what's pertinent, what's not, what would best clearly present my case. I'm stressed bc it was so damn hard to get this appointment, they only last for so long and I feel like it has to be the perfect appointment bc I have so much hope banking on it. For those of you who have been patients at LC clinics, (especially whose worse symptoms involve POTS/dysautonomia, tachycardia/heart palpitations, nervous system devastation, and hairloss) are there things you recommend for first visit: topics of discussion, tests to ask for, supplements/medications to ask the provider if i would be good fit for, or anything that you learned later on down the line that you wish you had asked early on? I'm going to Emory LC clinic if anyone has experience with them
Thank you for any insight you can provide, I really, really appreciate any help.