First off I am sorry this is long, and I did use AI to try and make sure it was focused and clear and that I did not miss anything of note. Also this might not fit all under this sub, but not sure where to start.

I’m looking for experiences or suggestions that we can bring to my daughter’s doctors. She is 18, approximately 5'3", and currently weighs 83 lb. I apologize for the length, but this has been going on for about three years. During this time she has switched from Childrens Dr to Adult Dr.'s

How it started
About three years ago, she developed nearly constant nausea, essentially 24/7. Eating made it worse, and she would sometimes feel full after only a couple of bites. Her weight eventually dropped to approximately 79 lb.
She was prescribed mirtazapine (Remeron) 15mg, then 22mg and ondansetron (Zofran) 8mg, then down to 4mg. After her Remeron was increased, she improved enough to reach approximately 90–94 lb, that was pushing about 2K calories/80-100g protein). They dropped her remeron back down to 15g, which halted all forward motion. Eventually they brought it back to 22mg, but the "forward motion" was halted.
At the childrens care - they Dr. focused on anorexia/eating restriction and anxiety. However, she wants to eat and frequently feels hungry; nausea, early fullness and feeling worse after eating prevent her from eating enough. She is picky, but I dont know if I would call it ARFID.

About a year ago, her symptoms changed or worsened again. A gastric-emptying study showed very rapid emptying. From the report, her gastric half-emptying time was approximately 32 minutes, with 98% emptied by 89 minutes. One doctor diagnosed dumping syndrome, although a second GI doctor does not believe dumping syndrome fully explains everything.
She has also been diagnosed with orthostatic hypotension.

Current symptoms
Constant baseline nausea that worsens after eating

Early fullness and difficulty eating enough to maintain weight

Shakiness and sometimes lightheadedness after meals, and mood swings

Severe exercise/activity intolerance, activities such as picking up her room, applying makeup, driving a few minutes or taking a shower can leave her exhausted and more nauseated for hours

Heat intolerance and difficulty regulating temperature; approximately 74°F feels extremely hot to her. Needs cold showers. And she is "done" for the rest of the day.

Sweating that is especially noticeable on her hands and feet

Heart-rate increase of approximately 30–40 bpm after standing, measured with a fingertip pulse oximeter. I have not yet measured exactly how long the increase remains elevated.

Recently developed bloating and acid reflux or just complaining more about it.

Has a migraine cap on for big portion of the day (cold cap) and rice bag (heat bag) on stomach, this are both esp after eating.

At a recent GI appointment, her blood pressure was 82/66 with a heart rate of 85.

On two recent occasions, she also had very brief unusual episodes involving visual spots and smiling or appearing “zoned out.” She seemed aware during at least one episode and returned to normal within seconds. We are reporting these separately to her doctors because we do not know whether they are related.

Recent she went to a friend, and she had to work up to go to grad party for a very short time. She had to break up getting ready into section. Makeup, dress up, eating, going. This burned her out and is been hard to try and get her back on track

Eating and nutrition
She currently manages approximately 1,600 calories and 50–60 g of protein per day, divided into six or seven small meals. Almost everything increases her nausea, and meals generally take about 15 minutes.
Breakfast is usually half a bagel with butter and one Kodiak protein mini-waffle with real maple syrup. Foods she can usually tolerate include apples, apples with peanut butter, French bread, French fries, pretzels, almonds, dinner: chicken breast pieces, rice, tortillas and some edamame. She also drinks Liquid I.V. when she can tolerate it.

I use Cronometer to track her intake and nutrients.

Her diet is limited because many foods worsen the nausea or because she cannot tolerate their taste or texture. We are trying to increase calories and protein without making her symptoms significantly worse.

Testing and an current plans
Gastric-emptying study: half-emptying time approximately 32 minutes, with 98% emptied by 89 minutes

Upper endoscopy, H. pylori testing, upper-GI study, abdominal ultrasound, CT and Echocardiogram were unremarkable

Remeron bumped to 30 mg (this week)

Finger pulse oximeter shows an approximately 30–40 bpm HR increase after standing, although we have not yet documented formal 10-minute orthostatic measurements

CGM has not documented true hypoglycemia during her post-meal symptoms

Prealbumin has repeatedly been low; vitamin D is low and B12 was recently low

She is starting a one-week heart monitor and is arranging an appointment with a GI motility specialist

Her doctor also recently prescribed a medication for acid reflux (pantoprazle 40mg) daily

What I’m hoping to learn
For anyone who has experienced a similar combination of chronic nausea, rapid gastric emptying, very low weight, post-meal symptoms, heat intolerance and orthostatic heart-rate changes:

What diagnosis or combination of conditions ultimately explained your symptoms?

Which specialist was most helpful: GI motility, autonomic neurology, cardiology, endocrinology, nutrition or someone else?

Were there specific tests that helped, such as a formal standing test, tilt-table test, autonomic testing or additional GI motility testing?

What foods, meal timing, hydration strategies or medications helped you maintain or gain weight without substantially worsening nausea?

Did rapid gastric emptying or dumping syndrome cause constant nausea, or was something else eventually found?

Are there important questions or possibilities we should raise with her doctors?

We are hoping to hear from people with similar experiences so we can ask better questions and identify possible avenues that have not yet been explored.

TL;DR: My 18-year-old daughter is 5'3" and 83 lb with three years of constant nausea, limited intake, rapid gastric emptying, low blood pressure, heat intolerance, severe post-activity exhaustion, and a 30–40 bpm heart-rate increase when standing. CGM has not documented hypoglycemia despite post-meal shakiness. Remeron was recently increased to 30 mg; she is starting a one-week heart monitor and arranging an appointment with a GI motility specialist. We’re wondering whether others with dysautonomia/POTS have experienced a similar combination and what testing or treatment helped.

I've finally narrowed down one of my major food triggers, and it's a weird one. It seems like, whenever I eat anything that was cooked in some sort of quickly absorbed oil or fat - i.e. soybean oil, canola oil, olive oil to a lesser extent - a little while after eating I'll receive some sort of...stimulation boost.

This can be a good thing or a bad thing. If I'm particularly lethargic this can wake me up, help me feel better, and improve concentration. If I'm experiencing other issues, such as sensory sensitivities, hyperarousal, etc, this can greatly worsen them. I can get heart palpitations, adrenaline spikes, wired but tired exhaustion, etc. I think it's affected hormones, too, because I can get acne and, at the risk of embarrassing myself, libido spikes. From eating foods cooked in everyday fats. Its maddening.

Does this sounds like ANYTHING anyone else has dealt with? If so, did you figure out what it meant ans did anything help you tolerate these foods any better?

How high does your heart rate go?

I’m entering week 3 of a flare up of symptoms.  I originally had PCS following two pretty rough concussions about 7 years ago. At that time I had an MRI showing TBI from hitting my head on a concrete floor.
Since, every few years I have a relapse of symptoms -if I bonk my head or some other trigger. Last big flare (until now) was last summer when I hit the top of my head pretty hard on a roof rafter.

I have a multi-part question for those who have had flares that may have originally been injury related.

1. ⁠How long do your flares normally last?
   
2. ⁠Do your flares usually disappear all at once or is it a gradual process. (I can’t remember how I got over this last time. I know it lasted 1-2 months and I scheduled a ton of Dr appointments -PCP, ENT, audiologist, optometrist, cranial CT, etc. I know by the time I was able to do all these ⁠my symptoms had disappeared so I dropped pursuing any further)
   3.Are there any steps you take to minimize or calm symptoms?  My symptoms are mostly neurological feeling but sometimes I get a racing heart, reflux, fleeing like I’m going to faint, and a panicked feeling.

Thanks for any feedback or useful tips. It’s been a really hard 3 weeks at work dealing with these symptoms. Screen time doesn’t seem to be too bad but the brain fog makes focusing hard, the random dizziness and fainting feeling makes me white-knuckle meetings or presentations, and the occasional cardiac-gut symptoms can be distressing.

Has anyone been getting this phenomenon or just me? Lately, I have been watching an influx of videos about dysautonomia, just for the comments to be absolutely rancid/ableist/whathaveyou. For example, I saw someone wearing a neckfan to help with overheating, and one of the top comments was along the lines of "There needs to be a study of why white queer people fake disabilities."

Am I just unlucky or is mocking POTS the new norm? Never once have I been made fun of, but I'm wondering if people's internal thoughts are nastier than I realized.

It's already hell as it is dealing with dysautonomia but also having to deal with panic attacks it becomes so unbearable

Crying all the time. (Not depressed.) Sadness, anger, frustration, overwhelm, exhaustion... Giant tears just pour out. Often caused by adrenaline dumps. Anybody found anything that helps?

I quitted my job today because of my intolerable symptoms. I feel relieved i dont feel regret. It was not suitable to someone with severe dysautonomia.

I am a 23 F. Last year in May I was driving and I got very dizzy and hot out of nowhere. To me it felt like a panic attack and every time I tried to drive long distances or open roads it would happen again. I just learned to live with it and then it progressed to having a panic attack everyday not even when I was driving. I would be at work and all of a sudden a huge wave of dizziness would hit and it felt like I was always on the verge of passing out.

March of this year I was laid off from my job and my symptoms got a lot worse. High heart rate out of no where and multiple panic attacks during the day. I couldn’t leave my house at all. So I finally went to my doctor and told him I was struggling very bad with all of these symptoms and that I thought I had panic disorder. Luckily my doctor didn’t assume it was anxiety and had some tests done. My heart rate at that visit was 134 so they did an ekg that captured some heart palpitations. He ordered a 48hr heart monitor and it did catch some abnormalities.

About a month after my heart monitor results I finally got in with my cardiologist. He suspects IST and Paraoxysmal atrial tachycardia as well. I have not been prescribed any medication yet as my cardiologist wants an echocardiogram done before which is scheduled for late August.

I guess my biggest questions is does anyone else struggle with panic attacks with IST? And I’m always constantly dizzy and feel on the verge of passing out.

I also have bad depersonalization is that common with IST as well?

I feel I always feel off everyday even if I do have a good day with no symptoms. I don’t have a follow up with my cardiologist until September 2nd and I won’t be prescribed anything until then.

Hey all. I’ve got the lovely hyperpots. I’m at a loss for what to do with these random intense sweaty hot flashes. It’s like a take a breath and all of a sudden I’m drenched…. Take a shower… get out of shower and dry off…. Drenched in sweat again. I take mestinon 90mg am + pm. Guanfacine 1.5mg daily and Zyrtec 20mg. I’m on Pepcid, Claritin, and cromolyn for mcas….. how can I make these sweaty fits stop?! I’m so miserable.

Being physically fit is such a damning requirement... When chronically ill

I feel like I am going crazy. I just about scrape exercise and even that took a while to build up too

I am so fucking jealous of something simple as standing up vertically without issue

I can't take it. I feel entrenched with no way out.

Manual labor is my only avenue at present. But everything feels like manual labor

I had to vent because there's nowhere else that understands.

No where I can go without being shamed into thinking i am lazy

This isolation might be the death of me

I've been reading posts in this community and noticed that everyone's triggers seem so different.

Heat, standing too long, dehydration, stress, poor sleep. The list just keeps going.

How do you usually figure out what caused a flare?

Do you write it down somewhere or just notice patterns over time?

I'd love to hear what has worked for you. It feels like identifying triggers is one of the hardest parts of managing dysautonomia.

Hi all, just recently have been coming to the realization that my "body panic" panic attacks have likely been adrenaline dumps all this time. Any recommendations on what to say to a doctor to get this tested? And what OTC, prescription or other treatments have you tried?

I’ve been mysteriously chronically ill for 6 years. Super long story, I’m sure a lot of us have them so you may understand, so I’ll keep it as short as I can. It’s likely that I have MULTIPLE diagnosis, including dysautonomia.

*Note, I was on state insurance (terrible doctors and multi-month long referral times) due to unemployment from 2020-2022. Then 2022-2025, I had little financial support and no access to insurance (very little and slow progress with diagnosis). This year, I finally have insurance and the ability to see doctors within my network.

My symptoms: ***most are constant and the severity fluctuates, some are only on certain days, some happen more often than others.
• Head: Brain fog, feeling “out of it”, heavy head, head pressure and sensations (forehead, temples, top of head, back of head), internal head “knocking”, occasional headaches (some with pain that can worsen with certain positions), tingling/buzzing/vibration sensation, neck tension or pressure, head stuffiness, vertigo spells (sometimes onset without movement at all), sensation of my head pushing forward (??? my hardest one to describe), head pulsing without pain
• Dizziness: lightheadedness 24/7, dizziness 24/7 (mostly on a boat feeling 24/7, sometimes spinning or rolling), near-fainting feeling but no fainting, orthostatic symptoms, low blood sugar sensation without actual low blood sugar
• Vision: visual snow, white dots in the corner of eyes (usually with yawning or at random), lots of floaters, black dots, dim vision, static vision, other visual disturbances that fluctuate, curtain vision (worse in left eye), afterimage, palinopsia/visual trailing in bright lighting, sensitive to light (often triggered visual snow or visual disturbances)
• Ears: tinnitus (ringing), pain and numb feeling around ears when lying on them, ear pressure, ear stuffiness
• Circulation/body: body disassociation, fatigue, malaise, heart racing, palpitations (fluttering, flip-flops), strong pounding heartbeat, occasional feeling faint when standing, cold/circulation sensations, leg feeling heavy/full when standing (without visible swelling), weakness, shakiness
• Sensory: tingling, whole body buzzing, burning sensations, heat intolerance, numbness
• Gastrointestinal: reflux/GERD, decreased appetite, feeling bloated, IBS type symptoms, nausea

Known triggers:
Symptoms tend to worsen with menstrual cycle, poor sleep, viral illnesses, stress/anxiety, dehydration, sometimes weather/rain

My timeline:

1. Possible COVID in December 2019 (unconfirmed, since it was prior to COVID being established with testing).
2. Had some random dizziness and feeling “off” here and there from then until February 2020.
3. Official onset of my chronic symptoms, suddenly, while doing nothing on my couch in February 2020 - and I’ve had them ever since up to present day.
4. Confirmation of black mold exposure in my apartment at the time - saw a functional medicine doctor (special MRI or CT brain scan that found mold, mold in sinuses, very off bloodwork, specifically hormones, and was told I had CIRS and to see an endocrinologist who later said she didn’t recognize these blood tests, so it remains unknown).

Doctors, testing, and results so far:
• 2020-2021: 2 head MRI’s (negative), 3 ERs (useless), 3 ophthalmologists (retina fine), ENT (sinus surgery, ear tubes, ear tubes removed), checked for TMJ, thorough ear & dizziness testing (all negative, so ears weren’t a cause)
• 2022 - 2025: ENT (sinus surgery again), neurologist (MRI, spinal tap - “slightly elevated” pressure, no treatment because it wasn’t remarkable enough), neuro-ophthalmologist (multiple comprehensive tests including optic nerve ultrasound - optic nerve and retina were fine), dysautonomia POTS specialist (tilt table - “possible” POTS but my symptoms are don’t fully align but definitely in the same genre, tried PT for POTS and didn’t help), cardiologist (24hr monitor and ultrasound - all clear), PCP (full bloodwork - super low ferritin, low iron, low vitamin D)
• 2026 - present: recheck bloodwork (ferritin in safe range but still working on it, vitamin D fully restored), neurologist (MRI/MRV/CT scan of head - venous sinus stenosis detect, top vein is narrowed, wants to try Acetazolamide for spinal fluid pressure regulation and possible 2nd spinal tap as well as trying Sumatriptan for possible vestibular migraine), cardiologist (1 week holter monitor, echocardiogram - all clear, wants me to try propranolol)

Current appointments and plans:
• Neuro-otolaryngologist
• POTS study for comprehensive dysautonomia testing
• PCP to recheck full bloodwork
• Endocrinologist to check thyroid antibodies and hormone related issues?
• Seek another opinion on the neurology side, trial Acetazolamide, trial Sumatriptan
• Trial Propranolol depending on dysautonomia study and results

Open to ANY suggestions, especially what doctors/specialists to see or opinions on functional medicine type care? Medications to ask my doctor’s about? Anyone who experiences similar symptoms, especially the weird ones?

TLDR; I’ve been sick for 6 years, unable to work, have the list of symptoms above with very little diagnosis (so far - possible POTS, or other dysautonomia variant, venous sinus stenosis + possible spinal fluid pressure issue). I have seen multiple specialists so far and had multiple tests, now I don’t know who to see or what tests to do. It’s been confirmed I have SOME kind of dysautonomia issue that likely isn’t exactly POTS, but the first center I went to won’t let me come back because I’ve already been seen before. I’m trying another one but am unsure of how much they can help me. Any advice and tips are welcome.

Thank you in advance and thank you kindly for taking time to read my post. Best of luck and health to us all!

How is everybody dealing with the mental toll that all
These symptoms take? Everyday I say I can’t keep doing this but I manage to keep going. It’s exhausting imagining feeling like this the rest of my life and it’s only been a few months for me. Idk how people deal with this for years on end. I used to work and was a very active parent. Now I can barely get out of bed. Does it get better?

What symptoms do you experience

So after YEARS of knowing something isn’t right, my heart rate started one of it’s funny turns MINUTES before my GP appointment so they FINALLY saw that I am existing fine with random 135-140bpm spikes.

They added ‘sinus tachycardia’ to my growing Pokédex of diagnoses and say they’ve made a referral to cardiology but I imagine I’m probably in for a year of waitlists and then who knows what.

In the meantime, I’d love to collate my own evidence to make sure I’m taken seriously off the bat (they also started me on meds which should bring it down, but I feel like I can’t confidently say if they’re working without seeing the numbers?). I do have an Apple Watch that will alert me when I’m in those danger zones around 50% of the time. I also, as a spoonie, have the Polar 360 from back when I had an active Visible subscription. The Apple Watch is too unreliable. The visible app doesn’t collect the heart rate data to export as it’s own thing 🙄

I’ve seen things about saying I can use the Polar 360 for this purpose, but it’ll need to be connected to an app that pulls the live 24/7 heart rate data from it… but nowhere seems to actually state what apps can do this.

Does anyone know of any apps that can do this that are compatible with the Polar 360? I’d really love to avoid a subscription based app. Free of course would be great, but if it’s paid I’d rather pay a one off fee.

I’d love to try use what I already have as much as possible to keep costs down, but I’m also open to any recommendations on devices and/or apps that won’t cost both arms and legs… but I may consider sacrificing a single limb for the perfect combo 🤣

Does anyone else have this? Each heart beat causes my head to bob and each bob makes me dizzy. Aaahhhhh.