Hi y'all. 25M. To keep a long story short, I developed POTS around 9 months ago. When all my symptoms started I had vitamin levels checked, and the only things that were off at the time were low B12 and low D. Corrected B12 and D did improve my symptoms and helped me recover from being bedbound along with helping the brain fog, but I still have neurological issues going on (possibly unrelated to my genetic makeup), and the POTS persists.

Any help or insight would be appreciated. Thanks.

Notable Detox Panel Homozygous Variants::

CYP1B1 L432V GG +/+

CYP2C19*17 TT +/+

CYP2D6 S486T CC +/+

Recent lab tests:

Test	Result	Reference Range
Vitamin B12	416 pg/mL	200–900
Folate (B9)	>24 ng/mL	>5.4
Vitamin B1	141 nmol/L	70–180
Vitamin B6 (PLP)	31.6 ng/mL	5–50
Copper	70 mcg/dL	70–140
Zinc	87 mcg/dL	60–120
Homocysteine	11.4 µmol/L	<10–12.9
Methylmalonic Acid (MMA)	249 nmol/L	55-335

https://preview.redd.it/myt9vtsvdx0h1.png?width=1157&format=png&auto=webp&s=203c22040ca70ab4b22185bf085950efc28de462

TL;DR: 25M. Severe onset of POTS possibly triggered by extreme stress (?) that left me bedbound for a few months before becoming more manageable. My genetic profile shows slow COMT, MTHFR, MTRR, CBS. Lifelong symptoms that never hindered my life until 8-9 months ago. Blood pooling, a chronically ‘bound’ pulse, and dizziness, all symptoms which worsen after eating, still persist. Guanfacine kinda helps but isn’t enough. Let me know if this sounds like you, if you have a similar genetic background, and what helped!

Disclaimer: I used AI to help organize my original writing since the original is much, much longer and more boring to read. I used em-dashes before AI was a thing, btw—downvotes to the left B)

📖 Background

I want to share my timeline, symptoms, what’s helped, and my genetic profile—hoping someone here has similarities and can point me toward what helped them.

Lifelong symptoms I thought were ‘normal’:

• Heat intolerance
• Some blood pooling
• Acid reflux / stomach issues
• Fast metabolism
• Inability to take hot showers while standing too long without feeling out of breath
• ADHD, anxiety, depression, family history of mental health issues

The only thing that ever limited me in my life despite these symptoms was my anxious and overthinking brain, but I’ve always loved cardio, skateboarding, walking, hiking, etc.

2025 – The crash

2025 was one of the most stressful years of my life: unexpected breakup with my partner after 4 years, bad food insecurity after graduating (108 lbs at 5’9” lmao!), living in a dirty-ass apartment with roommates I couldn’t stand. Constant physical and emotional stress.

On a random Wednesday in August, I went for a long walk and got extremely winded – way more than normal. Came home, slept 10-12 hours, and woke up so dizzy I couldn’t be upright for more than a few minutes. My neighbor took me to the ER and was discharged because 'nothing was wrong with me' as far as they could tell (classic).

From that point on I experienced a set of persisting symptoms, most of which still persist 8-9 months later.

Persistent symptoms:

• Brain fog
• Dizziness / lightheadedness upon standing
• Tachycardia upon standing (didn’t know it was POTS yet)
• Intense blood pooling in legs and arms
• Muscle weakness
• Involuntary muscle spasms (random body parts)
• Worsening acid reflux
• Body flushing when standing
• Chronically “bound” pulse – feel my heartbeat 24/7

🩸 Labs and Findings

PCP and cardiology ordered the typical labs. Only things off were:

• Low-ish B12 (~300 ng/dL)
• Low vitamin D
• Borderline high ionized and total calcium (unexplained – normal SPEP, normal 1,25-D, normal urine cortisol)
• High albumin
• Murmur
• Low Left Atrial Volume (benign, I guess)
• Low LV Mass Index (benign, I guess)

🏋️ Routine & progress

I adopted my own routine: gaining weight, lower body workouts, lots of water, compression, electrolytes, and vitamin supplementation (B1, B12, D).

Went from bedbound (Aug–Dec) to functional but still limited. By March, I plateaued. Still dizzy/lightheaded when standing. Can’t stand too long without feeling hot, flushed, out of breath, and symptomatic. Chronic bounding pulse, acid reflux, involuntary muscle spasms, muscle weakness, blood pooling, etc., still persist. The biggest area of improvement was the fatigue, tbh, which is completely gone on some days. Also, not convinced compression is actually helping me.

I also started Guanfacine in early April, which lowered my resting and standing heart rate, but I’m still symptomatic. Had bad fatigue for the first 2.5 weeks; now it has mainly subsided.

🧬 Genetic profile (relevant to POTS / dysautonomia)

Gene	Genotype	What it can mean (brief)
COMT V158M	AA (+/+)	Slow COMT – poor norepinephrine clearance.
MTHFR C677T + A1298C	AG +/- & TG +/-	Compound heterozygous – impairs folate activation and methylation.
MTRR A66G	GG (+/+)	Reduces B12 recycling, possible connective tissue issues.
CBS C699T	AG (+/-)	Possible sulfur/ammonia sensitivity
GSTP1 I105V + A114V	AG & TC (+/-)	Sluggish detoxification
VDR Bsm/Taq	TC & AG (+/-)	May affect vitamin D function (I was deficient).

(Left out CYP2C19*17, CYP3A4, and others that are less directly tied to POTS symptoms.)

I decided to undergo some genetic testing because I heard of some correlation between methylation issues and POTS / orthostatic intolerance / dysautonomia. Curious if anyone with similar variants got help from B12 shots, methylation support, etc.

🔜 Next steps

• Full vitamin B panel (1–12) + copper + zinc soon
• Tilt table test in a few days
• Asking cardiologist about midodrine for blood pooling
• Seeing a neurologist (referral in progress)

❓ Questions for the community

1. Anyone with similar lifelong heat intolerance + sudden severe POTS after extreme stress?
2. Anyone with slow COMT / MTHFR / MTRR / CBS / CYP1B1 / GSTP1 find specific meds or supplements that helped?
3. For blood pooling—did midodrine, Mestinon, or something else work best for you?
4. Anyone with high calcium / albumin for no clear reason? What did that turn out to be?

Thanks for reading. Let me know if any of this sounds like you and what helped. :)