Hi, l’m wondering if my doctors hadn’t done enough testing, and if so what I should possibly ask for? I know this is a pretty long read lol. Any support or advice would be appreciated though!! Even just knowing someone else is having a similar experience 🫶🏻
I was diagnosed with PoTS after having a CMP + Anemia Panel, normal ECG, and a few bad NASA Lean Tests both at home and in office. I did have a B12 deficiency that I’ve been treating, but now all of my levels are above board! (My PCP even had me double-check myself.)
I see my PCP again in 3 weeks for an initial EDS evaluation (and I plan on asking about ME/CFS then), and in 5 weeks I (thankfully) see a new cardiologist.
My issue is I never had a Holter Monitor, Echo, TSH or ANA Panel done, and I’m not sure if I should be pushing for these tests. I’m currently on Metoprolol 25 mg, but my flares and symptoms are all over the place and have been slowly worsening.
I’ve had 3 syncope episodes this year - 2 of them happened while I was sitting. I’ve also apparently had a flare where I started slurring my speech and stumbling, but I don’t remember any of it and found out from a coworker too late.
But I think the weirdest thing is in the past 2 months I’ve had a couple new episodes (after work/exercise) where my HR goes up to 125-160 while sitting, drops rapidly to 70-80, then climbs back up to 115-120 until I lay down.
I’ve tried magnesium, Claritin & compression socks + abdominal bands + shorts (multiple pressures & variations) with no improvement (& sometimes side effects). I’m super careful with fluids & electrolytes, usually small meals, and no caffeine since Dec. 🥲 I also was in PT following CHOP protocol but I was pulled out last week due to worsening of symptoms.
My BP tends to be between 100/70 - 140/90 or around 160/110 if I have more than 4G sodium, but since starting Meto I’ve had a couple drops as low as 85/55. HR range can be 30-200, avg day 50-140 - which is pretty similar to before Meto.
Daily Symptoms: Headache, Chest pain, Lightheaded or dizzy w/ muscle pains when standing, Overwhelming fatigue, Some days my head feels too heavy to hold up on my own, Blurry or out of focus vision during/after standing, Restlessness and internal buzzing, Shortness of breath, Muscle flutters/twitches or tremors, Brain fog, Temperature intolerance - flushing/sweating or shivering, Palpitations, Never feeling rested after sleep - (But possibly due to trouble falling asleep and waking up often to pee), And pain in my back, wrists, neck, shoulders, hips, knees, ankles, and jaw.
At Least Once a Week: Night sweats, Car sickness, Migraines (Nausea, light sparks/floaters or double-vision, and more sensitivity to light & sound than usual), Tunnel vision and/or black-outs occurring with ringing in ears or a quick loss of hearing, 1-30 min episodes of tingling and/or numbness in one body part at a time, Jelly legs / knee buckling, and bloating.
PEM: Lasts 12-48 hours and starts 2-20 hours after exercise or work or even a quick chore. Feeling flu-like with a cough, sore throat, hoarse voice, itchiness, dry eyes and mouth, worsened headache + fatigue + chest pain, and sometimes a runny nose + low-grade fever and/or more spikes even while resting.
Other Symptoms: Abdominal pain, mild hair loss, random difficulty swallowing (usually have to move my trachea back into place), metal scent + taste, joint redness, heavy and sore arms (mainly left), burning or shock-like feeling in skin, bilateral piezogenic papules that occasionally itch on my heels & wrists, and very mild varicose veins & petechiae.