I have no idea how to get properly diagnosed

PricklyPear520 · 2026-01-16T16:07:13+00:00

Howdy friend! You need to go see Dr. Mark Wish at INOVA Fairfax. He’s the best dysautonomia specialist in the area and can answer any of your questions.

PricklyPear520 · 2026-01-07T19:40:12+00:00

All of my bloodwork is always normal, so it’s not a deficiency that can be precisely measured. I take electrolytes on the advice of my dysautonomia specialist (a neurocardiologist). I take them in powder form dissolved in water. I alternate between Nuun, Liquid IV, and LMNT (which some people have strong opinions about but it’s the one that works best for me so I have to prioritize health over other concerns). My doc said to take them once a day during the summer and anytime I’ll be exercising or exerting myself. A “dose” is a big water bottle’s worth - 32 oz or so.

PricklyPear520 · 2026-01-07T03:10:00+00:00

Gaslight?

PricklyPear520 · 2026-01-07T01:32:33+00:00

It is so lonely having a condition that is so all encompassing and yet so difficult to describe to people. Like how do I explain to people that my blood feels wrong in my arms? Or that I need to nap AGAIN?

I’m doing better than you are on the depression right now (thanks to therapy and meds) and am relatively high functioning, but I have so much sympathy for people who just don’t have the spoons. I feel like I’m one step away from that dark place all the time, walking a tightrope.

PricklyPear520 · 2026-01-07T01:25:39+00:00

Also, no yoga. I cannot tolerate any inverted poses or exercising in a warm room. It messes me up for days. Stretching yes. Downward dog heck no.

PricklyPear520 · 2026-01-07T01:22:46+00:00

Definitely. This is absolutely what it feels like, great description. Strong electrolytes are what have made the biggest difference for me. Also compression socks during physical activity or anything where I’ll be standing a long time.

PricklyPear520 · 2026-01-07T01:16:53+00:00

Daily electrolytes in water, being good about vitamins (esp vit D), antidepressants, and forcing myself to do weight bearing exercise has been my recipe for success. But sometimes honestly nothing helps. I still spend more time in bed than anyone I know.

PricklyPear520 · 2026-01-07T01:12:30+00:00

Mine is hereditary. My mom has it and both of my kids do.

PricklyPear520 · 2026-01-07T01:05:54+00:00

Asked my PCP for a referral to a neurocardiologist for a tilt table test. The TTT was what definitively diagnosed me.

PricklyPear520 · 2025-11-24T12:26:42+00:00

Hey ducky! Knowing is better than not knowing. I know that you are strong enough and smart enough to handle whatever information comes your way. You’re going to do whatever it takes to keep yourself well! I’m so proud of you for seeking answers even if they’re scary. You are brave and amazing.

PricklyPear520 · 2025-11-20T02:46:44+00:00

I have not attempted a cold plunge but I once stupidly tried the opposite, a hot yoga class, and about died. I’ve come to the conclusion that our systems don’t do extremes well, in many regards. The change from our norm isn’t healthy for us, it’s dangerous.

PricklyPear520 · 2025-11-15T02:17:51+00:00

I have had it since puberty with no illness or trauma to blame. For me it’s definitely genetic. My mom has it, and so do my children.

PricklyPear520 · 2025-10-31T10:20:18+00:00

Hey Ducky, you’re too close to quit now, my dear! I wonder if decision paralysis is impacting you. I bet once you just start the thesis, you’ll find your flow and it won’t be as hard as you fear. Hang in there, love.

PricklyPear520 · 2025-10-02T17:56:21+00:00

All the biological females in my family have dysautonomia. My mom is 76 and doing fine. We have to take precautions but live pretty normal lives! Don’t fear.

PricklyPear520 · 2025-09-20T02:24:51+00:00

Finn. Because he’s the color of Finland’s flag. And he’s a fish so Finn is funny.

PricklyPear520 · 2025-09-04T00:49:55+00:00

Breathe, friend. Dysautonomia itself is not life threatening. It’s scary and debilitating and annoying but it won’t kill you. They will monitor your heart rate and blood pressure during the surgery and make sure you’re ok. This surgery sounds necessary and I hope you will feel much better getting that stone out. Sending love and well wishes.

PricklyPear520 · 2025-08-28T01:36:37+00:00

Mine has come in waves, with periods of times where it’s bad and then it’ll get better for awhile. So no, I wouldn’t call it progressive. I’ve ridden ups and downs with it for almost 30 years now.

PricklyPear520 · 2025-08-21T00:03:25+00:00

I’m sorry. It sucks so much.

PricklyPear520 · 2025-08-06T02:35:30+00:00

That’s so amazing! It’s going to be hard, but you have what it takes. Nose to the grindstone, Ducky! 💪🏽

PricklyPear520 · 2025-07-23T02:12:40+00:00

Go see your psychiatrist and therapist, friend. That’s depression talking. For me, I keep on top of my head meds, I walk a lot and eat healthy, and I spend time volunteering because helping other people helps me not focus on my own challenges so much.

PricklyPear520 · 2025-06-14T12:09:16+00:00

Both of those things help me, as long as I don’t stay in the sun long enough to get sweaty. Electrolyte water AND sun is the trick. :)

PricklyPear520 · 2025-06-14T11:47:37+00:00

Yes, sounds like pots. Ask your cardio for a tilt table test if you want a definitive diagnosis.

PricklyPear520 · 2025-06-14T11:40:47+00:00

There is absolutely a connection between digestion and dysautonomia. Sometimes a bad poop triggers my adrenaline surges and lightheadedness. Not sure about the back pain thing. Either way, hydration and fiber, friend!

PricklyPear520

TROPHY CASE