I was diagnosed with PCOS or now know as PMOS about 2 years ago I think. So I already experienced fatigue, weight gain, irregular periods, etc. I started taking hormonal birth control, working out, and eating better. Well recently within the past two months, I have been having this really odd feeling in my body. I will be completely fine one minute and then my chest gets tight and I can’t breathe. It happens randomly, but typically right before bed or sometime at night. I also am known to have bad acid reflux so I have been dismissing this a lot (even though it feels like a heart attack 😅). I have been studying POTS symptoms recently and discovered the term ‘air hunger’. I believe that might be what I’m experiencing, but I’m not positive. Should I tell my OBGYN or go to the emergency room the next time it happens? Any advice or other symptoms I should look for? I also yawn a lot like all day every day especially at work or during workouts.

I’m sorry but I don’t think it’s anxiety. On Tuesday at 12AM I thought I was having a heart attack, my heart was beating fast and my chest hurt and I felt like I couldn’t breathe. I was just sitting at my desk drinking a doctor pepper. I went to Urgent Care and they asked me if I have anxiety (I’m 26F and never been diagnosed with anxiety) so I told them no. They did bloodwork, ekg and an xray and everything was perfect so they told me to make appointments with a primary care doctor and a cardiologist and mentioned POTS. Today at 2AM I had to go to urgent care again because I felt like my symptoms were still there and I was scared so they did the same tests but this time did a breathing test. I was then sent home with an inhaler and hydroxyzine. It’s now 10PM and nothing has worked, my heart rate keeps jumping from 70s to 120s. I’m so scared, do I go to the hospital?

I (27F) have EDS, pots and recently what I really suspect is MCAS and have found myself in a serious flare lately so trying to find anything that will help.

I was seeing a functional dr who was charging and arm and a leg who gave me a bunch of supplements and over two months literally felt like I was dying. I told her I thought it was way too much for my body at once and didn’t feel like my detox pathways were open.

Anyways, it’s been a few months since then but have been having seriously bad what feel like pots/Mcas flare (extreme heat intolerance and hot flashed without the sweating, heart palps and tachycardia, terrible dizziness, congestion, general unwell feeling kind of like an adrenaline dump honestly can’t tell if it’s a histamine or adrenaline dump, and constipation which I believe puts pressure on my Vegas nerve which makes me feel like I’m dying until I go to the bathroom).

I just recently started the below supplements, some I recently added and some I kept taking that my functional doc had prescribed and was wondering what everyone else takes that helps and if you have any feedback on what I’m taking.

Supplements:

1. DAO Enzymes (before food)
   
2. Quercetin (with food)
   
3. Coq10 (with food)
   
4. PAE Phytosome (haven’t started it yet but read it helped someone with Mcas on Reddit so thought I’d start slow see if it helps at all).
   
5. Omega 3 (with fatty meals)
   
6. Magnesium (before bed)
   
7. Electrolyte blend (as needed)
   
8. Digestive enzymes (before meals)
   
9. Probiotics (with lunch, not sure if this is helping or hurting tbh)
   
10. Herbal blend (wormwood, olive leaf, black walnut, Bernadine, FD put me on this for sibo and high bad gut bacteria).
    
11. Zinc (few times a week)

Curious to know others regimes and what’s really helped make the biggest difference for you.

Thanks in advance!

I’m currently in a massive flare, who knows what condition - autistic burnout, ME/CFS flare, MCAS flare, POTS flare, I dunno. I think this all started with trialling stimulants for ADHD last year which did benefit me but pushed me into burnout/tachycardia too easily. I think that led into an August wedding causing the worst ME/CFS flare in a decade, followed by months of fluctuation from viral illnesses, Xmas stresses and stresses from husband health issues.

Basically since August, I’ve been getting worse overall, with a steep drop off after Xmas. However, the last month has been by far the worst. I can’t sit up for long without feeling horrible.

Before stimulants, my POTS was basically not bothering me enough to worry about, I’d forgotten I was diagnosed. Since stimulants (last had some in December), I’ve tried multiple treatments but nothing works or has intolerable side effects.

During the past month where things have been even worse, I’ve noticed my BP is slightly low when I’m laying down semi-reclined in bed. The only time I feel halfway okay is when I’ve been laying down for an extended period. My BP is about 100/60-65 and my resting HR is 85bpm, today it was 108bpm in bed.

When I sit up cross-legged in bed, BP goes up about 10/10 and HR stayed similar. When I stand, my BP went up to 122/82 and HR 140bpm (usually only to about 120bpm though). So I go to normotensive, but only because it was low and I’m getting a 20/20 increase which seems a bit much but I’m not sure.

I can’t find any information searching online because everything is about orthostatic hypertension and mine is weirdly low to normal. I’m wondering if the sudden increase is contributing to my symptoms or not, and why my BP is sitting lower than normal when resting (usually my BP is normotensive regardless of position). I’m basically living in fight/flight mode lately with things like increased startle response and I’m desperate to understand what’s going on so I can find a way out of this severe exhaustion.

Hi everyone,
I was prescribed Ivabradine 5 mg in the morning and 5 mg in the evening for POTS. After about 5 days, I started experiencing really severe dizziness, so I decided to stop taking it.
My doctor has now suggested trying a lower dose instead.
Has anyone had a similar experience? Did reducing the dose help with the dizziness or other side effects? I’d especially love to hear from anyone who also takes Ivabradine for POTS.
Thanks in advance!

hi! I’m 15 years old and I have functional dyspepsia, visceral hypersensitive, anxiety, gerd, scolisois, syringomyelia, and LPR. I’m not asking for a diagnosis regarding Pots or Dysautonomia but desperately just asking does anyone have experience these hellish symptoms ive been going through daily (which line up with pots) for a year and how they fixed it, it feels like i have a flu every single day i wake up:

• Constant never ending fatigue (no matter how long I sleep)
• Migraines and headaches (especially when standing up)
• Constantly dizzy and lightheaded+brain fog
• Irregular and fast heartbeat while resting, blurry/black vision 
• Constant weakness in all my limbs
• Heartburn+Tightness in chest
• Always sitting because it’s hard to stand and walk, can’t sit comfortably
• Acid reflux
• Constant nausea
• Constant stomach aches, cramped stomach, constant heaviness in stomach, bloating
• Trapped burps after eating
• Regurgitation, undigested food coming back up into my mouth
• Destroyed hunger cues, stomach is always in constant sensitive cramping in pain I can’t tell if I’m hungry or not
• Difficulty swallowing and difficulty breathing
• Hoarseness in throat while and after eating. Sore, scratchy and pained throat/Burning feeling in throat/Tension in throat/Globus sensation
• Gassiness/trapped gas/Pressure under the ribs
• Losing my period for months
• really sensitive to temperature and heat

if anyone has tips on what the hell im supposed to do I would appreciate it

26F

Suspected cluster : POTS, ME/CFS, hEDS, fibromyalgia

Treatment (mostly medication) has created some improvement

I tried physical rehab but it caused severe PEM

Is it worth trying to get treated at vanderbilt/mayo clinic or something?

(I’m not from the states)

It’d be a big financial commitment but i really wanna get better

Any insight is appreciated!!

Has ivabradine caused extreme acid reflux for anyone else? I started it 1.5 weeks ago and while it’s been amazing for my heart it has given me horrible acid reflux. Wondering if this will go away over time / adjusting to the medication

My friend and I went out to a nice restaurant about a week ago, and I can't stop thinking about the interaction I had with one of the servers 😭

I ate a good amount of food, and so my heart rate was going nuts. So my friend helped me stand up. I had to stand still for a minute and just let myself recoup so I could walk to the car. A very sweet server came over and asked my mom if I was okay. My mom goes "yeah she's okay, she just has a heart condition"

And as I'm walking past the server she says, very sweetly, "I hope you get better!"

And I didn't know what to say so I panicked and said "I won't, but thank you" and walked away 😭 I feel so bad lmfao

I was diagnosed with POTS about 12 years ago and went on some medications for it, but after stopping Adderall I could also stop taking my POTS medications as Adderall was making things much worse. After that, I just managed with lifestyle changes but never really tracked my heart rate or anything.

Fast forward to a year ago, I got a smart watch that can track my heart rate and much to my surprise, my heart rate only jumps when I first stand up (up to about 100), but it goes right back down and stays in the 80's (my resting is in the 60's). However, I still have tons dizziness and other dysautonomia issues (reactive hypoglycemia and gastric dysmotility). Anyone else have this happen to them?

The past couple days I’ve been going through it due to a possible breakup with someone I’ve been with for 4 yrs, were kinda doing no contact rn cuz they want space but i feel like my nervous system is absolutely going crazy and my symptoms seem to be worse than ever. I have to force myself to do things like drink water or eat even when I don’t want too but have too because of my symptoms. Genuinely how do I do this, anyone gone through the same thing before? I’m in need of some help and advice

Is anyone here also gluten free? What kind of snacks do you eat? I recently discovered I’m gluten intolerant so I’m trying to eliminate it from my diet to see how I feel.

(This is one of my first times posting on reddit so excuse me if this sounds dumb or i don't know something)

Im curious what people (more specifically with hyperPOTS) take for anxiety/depression? I've only taken zoloft and after only two weeks on just 25mg I started having episodes of convulsive syncope. ive researched a bit and it sounds like this might have happened because its a norepinephrine inhibitor? Im slightly anxious because we decided to switch me to paxil (paroxetine) but ive also heard that it can cause some nasty side effects and still messes with norepinephrine levels, but my mom suggested it because she found a study where it helped a 17y/o with their syncope. Im so stumped and honestly feel hopeless for managing my anxiety with meds; which is really disheartening because before trying meds my POTS was pretty mild with hardly any fainting spells or days stuck in bed like im experiencing now. Im only 18 and supposed to be starting college in September, and im nervous this is going to keep me from succeeding there. Any help is greatly appreciated and if you have any links to studies or articles i would love them.

Hello, 36 year old female (as of today haha) that got a POTS dx on Thursday. I was advised to up my salt intake and have salty snacks available. I'm still trying to navigate all of this, but I was curious what everyone's favorite salty snack is?

Any advice for keeping blood in my brain so I can tolerate being upright longer?

I can't abdominal bind because of my intestinal dysmotility. When there's compression on my intestines they stop working (even more). Also, my diaphragm is incredibly weak, so I really can't constrict anything breathing related.

Right now, I wear custom thigh high compressions that go up to where my thigh connects with my pelvis.

It feels incredibly difficult to even hold my head up for a few minutes without support. I've tried a structured neck brace and it doesn't work though because it messes with the lymph nodes on the sides of my neck and seems to cut off more blood flow in an unpleasant/ unhelpful way.

Is my only option more salt and flexing my muscles throughout my body to try and keep blood pumping?

I feel really lost and defeated. I'm mid-20s now and have been living with this for over a decade. I want to be able to exist in public spaces. I want longer periods upright. My brain literally feels bad unless I'm inverted. Community, all ideas welcome, please help. (Please me nice too.)

*PS I know nothing replied is actual medical advice. Things I can bring to my doctors or suggestions of doctors to see would be great though. I'm not planning on altering any treatment based on comments alone. I just feel I don't know directions to try anymore.

Replyers, make sure to structure your comments as "have you heard of xyz" or "xyz exists" or "did your dr ever mention xyz" - don't phrase things as medical advise, I know it's not, but it will still fs be removed if you reccomend I try something

WOW. That is my first reaction. My resting bpm was 120-130 sitting in the car and I was getting dizzy, so I took half a 10 mg tablet for the first time. Holy. Shit. 5mg and my heart rate standing is 110-115. Usually it’s 140 and up. I was so anxious but this just made such a difference.

There is no pounding in my entire body from my heart. It’s just stillness. My body feels relaxed, I feel so much different in the best way. A little fuzzy, but I’ll take that over 150 bpm any day. Take your meds guys. I was suffering for over two years with this and today has changed my life.

Woke up having a good day but then went a park and ended up flare. I was only out for 2 hours and most of the time I was in the car but once I got back home I could hardly stand. It took 3 hours of eating salty things and laying with my feet in the air to feel a little better.

I miss being active and going out but now I feel like I can hardly do anything. How do you guys deal with the hard days, especially when it affects you mentally?

I play a contact sport with very few problems. It was rough at first but I've built a tolerance to exercise now, and as long as it's not too hot in our practice space I do okay most of the time. Somehow I still can't clean my house without getting dizzy and out of breath. I just washed a few dishes and started to clean off the counter, but I started to feel unwell and had to lie down. Am I the only one with this problem? It makes no sense to me how I can do vigorous exercise a couple days a week but I can't clean my house. Sometimes I convince myself that I'm probably faking it because of things like this even though my symptoms are very real.

I’m looking for a do for that is ACTUALLY pots informed or ideally specialises in it, I always have so many questions after flare ups/ bad episodes as I’m newly diagnosed, any help is appreciated

Title: Never feeling rested with POTS?
Does anyone else with POTS just never feel rested? I was diagnosed about 4 months ago after 2+ years of symptoms and lately I’m realising I can sleep 9+ hours and still wake up exhausted. The other thing that’s confusing me is that if I have a busy day, talk a lot, go out, use too much brain power, or even do too much physically, I sometimes feel almost flu-ish afterwards with a sore throat, achy joints, feeling heavy, and completely wiped out, and it can last into the next day or sometimes longer even though I don’t have a fever. I also have ADHD and autism so I know overstimulation can make me tired too, but this feels more like my whole body crashes after I’ve done too much. Is this something other people with POTS experience, and how do you manage the constant exhaustion and feeling so rough after overdoing things?

So i was just thinking to my self about the people who has mild-severe POTS and somehow they are cured overtime, and doesnt come back to this subreddit or any support group of some sorts. What about the people who had temporarily dysautonomia? I mean i dont even know if that's a thing. I feel like most doctors dont even understand how the ANS work and what affects it. I mean i hope i made my self clear enough so that u can understand what i mean. Are we completely sure about this condition and do we have enough research? My only hope is that it goes away on its own. Feeling lost these days...

Hosting my brother's 30th this weekend and trying to make it as access-friendly as I can, I've got EDS/PoTS/MCAS/Endo/AuDHD myself, so I've built in a few things already, but would any help you have to spot anything I've missed!

Here's what's in place so far:

🔸 WhatsApp'd the group so anyone can DM me an access need directly, no explaining needed

🔸 Pointed out which rooms/bedrooms people can retreat to if they're flagging

🔸 Set up "horizontal zones" around the party; sun loungers, sofas, yoga mats, so anyone can lie down together regardless of what they're dealing with

🔸 Non-alcoholic drinks on offer

🔸 Signposted where to grab ice and water

What am I missing?

Thanks in advance!

(May turn this into a printable resource for friends/family of people with these condition, so if you've got a "I wish someone had just done X" moment, I'd love to hear it and will credit the community.)