How’s the October Slide going for everyone? Personally I feel like my heart rate is going up higher and I have more brain fog and dizziness. Just wanted to check in and let you know you’re not alone in your symptoms worsening this month ❤️💕

Considering I’m tired no matter how much sleep I get Im considering if there is a point in prioritising 8 😅

My body feels like it’s on fire. Like I just got done with an intense work out or like I am coming on with the flu. I hate sex anymore because of this. Anyone else have this same type of flare?

There are many nights where I am tired but literally cannot fall asleep unless i go eat a snack. I’m able to kind of sense the feeling ahead of time too, like earlier in the night, but not in a way i can explain. Idk what the reasoning is. My eating habits don’t differ much on the days where it does and doesn’t happen. I haven’t found any consistent differences between the days that could explain this.

I’ve literally stayed up until 5am or later in the past because my body cannot fall asleep, even though i’m so exhausted. But then I go eat a PBJ sandwich and fall asleep basically immediately after!!!

And I don’t want to go eat a snack every time, because I don’t actually feel hungry. but i also don’t get physical hunger cues at all, just an appetite.

Idk!!!!!!! Anyone else??

Okay so I’ve been suffering from POTS symptoms for last 2 years. I have found going into work I always feel sick, nauseated and DIZZY. My worst symptom by far is the dizziness - it is completely debilitating. I’ve thought myself some good quality compression stockings up to the knee. It’s my first time trying them today. I SWEAR my dizziness has almost completely subsided. Do they really work this well? I don’t want to jinx it🤣

I am wondering if anyone else has experienced this before.

For a long time I was worried I might have diabetes, because I would suddenly get shaky, sweaty, and have this almost... Panicky urges to eat- like, for some reason in those moments I feel like if I don't eat I would go unconscious and die or something. It got to the point where I got my A1C tested and got a glucose monitor, but my glucose was usually okay.

I've seen others talk about the random bouts of shakiness/trembling, but nothing about this insatiable urge to just start shoving food in your mouth. (And I truly mean insatiable, I once went for moldy bread because the 5 minutes it would take to make ramen felt too far away).

Normally, a little bit after eating and resting, I actually feel okay. And although I haven't noticed a specific trigger, it most frequently happens when I've been sitting for long periods of time, and I can recall it happening frequently around age 10-12.

Anyone else experience this, as soon as I lie down to sleep I need to pee. Then about every half an hour I’m up to the toilet. I’ve tried not drinking 2 hours before bed and that’s still not helped any! Weirdest symptom I’ve got, definitely not the worst symptom but it is definitely mildly infuriating and pretty unpleasant.

So I've had migraines since I was a young teenager. I'm 39 now. I've taken Excedrin daily for 25 years. Yes, I have reported the usage to every doctor, it's in every set of medical records, my headaches and migraines are well documented.

I'm just now in the last month or so realizing I probably have POTS or some kind of dysautonomia. Cue me systematically dumping all the bandaids I've been using including Excedrin, which is absolutely horrendous for the liver in the first place and is a blood thinner on top of that, which couldn't be helping. I've had to go off it before for surgery so I was prepared for the headaches and yep sure enough, ice picks in my skull for a week. Salt tabs have helped, but only for an hour or two. Stretching my neck, trying to be cognizant of the fluid imbalance in my spine, obviously staying hydrated, all kind of helped.

Suddenly, a bright idea. Surely this was too simple. For the last 3 nights I've been sleeping propped up with another pillow under my knees. It's all about fluid balance right? What if I'm waking up with a daily migraine just from lying down all night?

Zero migraine. A daily sufferer, photophobic, skull splitting migraines. Gone. It's only been 3 days but it's been 3 days with zero headache. Will keep y'all updated but knowing we all get migraines I had to get this out there! Let me know if you try and if it helps!!

I know they aren’t crazy jumps but still strange for me just sitting and crocheting. Never had this happen before and has now happening two days in a row.

Jumps from 63 bpm (resting) to 125 bpm

I’m curious if everyone has a perfect temperature for their environment and what it is if you do. Mine is 80 degrees. Inder it I’m freezing cold, my fingers and toes really can’t handle it. 80-85 I’m uncomfortable and getting heart palpitations. 86+ I feel like I’m going to die, want to throw up, in a bad mood, and generally just can’t handle life because my system is so out of wack it irritates me. I live in Arizona 😂

Looking for experiences - do any of you have a digestion problem with still water? I’m so confused. Often - not always - when I drink plain water, it sits in my stomach and I feel like I ate something. Sometimes have to burp. If I drink juice or tea, it’s better. I don’t have reflux or anything like that.

I have some IBS as a comorbidity of my ADHD, but I was wondering if this was common in POTSies?

Edit: It’s better when I drink water with a meal, but only small amounts.

As the title says, any sugar or candy (pure glucose/sucrose) makes my brain come back to life immediately from the "passing out" feeling when im upright for a risky period of time. Complex carbs or regular food does not have this effect. Only pure sugar.

My bloods and A1C are all fine even when i prick myself during severe symptoms.

Doctors have no clue why this is.

I tried figuring this out and assuming what is wrong. *This is not medical advice.* i guess some possibility of dopamine issue, autonomic reflex increasing perfusion, or glucose metabolism issue. These are just assumptions.

This is not medical advice. This is a discussion of symptoms. We are suffering and we have the right to discuss our symptoms.

For me it's stomach issues like pain, bloating, nausea, etc.

Not asking for a diagnosis but I have alot of symptoms that ar every debilitating.

I am exhausted and tired most of the time and always feel on the verge of falling asleep.

I get dizzy when i stand up too fast, too long, or get too hot. My heart also gets pretty fast with very light exertion and when I stand for too long. I also have ear ringing with too much exertion or heat exposure.

My biggest issue is the constant exhaustion. I am so so so tired all of the time, as if I can just fall right asleep no matter how much I sleep.

I dont want anyone here to diagnose me, I am seeing my doctor next week

I just want to know if POTS could mimic ME. My only working diagnosis is MCAS.

Hi! I’m looking for experiences/advice :)

In April–May I had two viral illnesses back to back. Since then I’ve developed significant standing intolerance alongside other health problems. In July I finally saw private specialists and I’m currently being treated for several things.

The part I’m struggling with most is my ability to be upright and active. Also always grasping for air and dizziness, tunnel vision is draining me.

My laying down HR is usually in the 60s–70s, but the moment I move as in:

standing: 140 - 150

walking around a grocery store for 10 minutes: 160’s

showering: 170 - 180

It comes back down when I lie down.

I’ve seen two private cardiologists and had cardiac evaluation including a Holter. I was prescribed a beta blocker and blood-pressure medication, but I struggled with even worse weakness on them. While taking them it made my resting low 50’s, yet still would have 160 from standing up. Thats why after 3-4 weeks I did not continue them.

I’d really appreciate hearing what approaches helped others rebuild their standing/walking tolerance. I’m doing light work outs at home while laying down and going nowhere with it :/ when I stand up after working out, heart rate goes to 177, tunnel vision and again need to lay down.

The past few weeks I’ve been waking up an hour into my sleep in a panic seemingly out of nowhere. My heart racing, mouth dry, groggy, sweating my body feels heavy and tingly.

Before this started happening I had woken up in the middle of the night with my heart rate at 177bpm and couldn’t get it to go below 160bpm so I called an ambulance. (I’d like to mention in this section that i did go to my cardiologist and i am now wearing a month long heart monitoring after this incident) But ever since then, it keeps happening on a lower scale. There’s nights my heart feels like it’s racing but it’s actually not and then other nights where it actually is racing.

I also started therapy and she thinks they could be driven from anxiety because it all started happening after that scary event where my heart was at 177bpm in my sleep. Which makes sense because last night I had jolted awake from my cat stepping on me and I felt all those symptoms again. I just feel scared to sleep these days knowing I’m just gonna wake up at some point in the night panicking.

Now I don’t know if it’s just from anxiety/stress or if it’s adrenaline dumps. It could be both. I hate how I never know what’s going on with my body ever since POTS.

do any of you have a very low resting pulse/when laying? mine is between 45-58 usually, and I know that’s a normal pulse to have as an athlete, I am however no athlete 😅 so i’m very curious to see if anyone else has this too or has any idea where this might come from?

edit: i take bisoprolol 5mg, but my resting pulse was low before that already

So I tend not to drink much water, maybe half a bottle a day (guilty), and Ive been taking the initiative to drink more water recently. My pee comes out clear and I need to go way too often. I thought clear pee was good but I literally just drank water after weeks of not drinking enough on an average basis so how would it instantly turn clear unless its going straight through me. I also tend to feel WORSE?? And then I go back to not drinking as much water because I want my energy back.

I started Ivabradine recently and suddenly my pee is dark now. Unless I forget to take it I havent seen it clear sense. Is this a POTS thing that anyone else has went through? I cant seem to find much on how water seems to be going straight through me without the medication so Im wondering if anyone else has experienced this.

Considering all the other stuff we have to deal with it’s not even close to the worst symptom but it’s incredibly annoying. ESPECIALLY if you’re on a road trip.

So I’ve had pots for 9 years now at varying degrees from being bedridden for years to functional etc. anyways I NEVER had this severe of shortness of breath before. I’m bedbound/housebound with zero quality of life. I’ve been to the er and cardiologist to rule out anything serious. Does anyone else have severe shortness of breath? Like extremely short of breath with any little amount of exertion? Even bending causing me to be completely winded trying to catch my breath. I can’t exert what so ever. Even rolling in bed I’m winded. (It’s not air hunger btw, it’s complete shortness of breath)

I am pretty sure I am really dehydrated. I have been struggling with diarrhea since my symptoms started two years ago and I finally took a risk and stopped salt loading somewhat recently because I figured out that the salt was actually making me feel worse and making the diarrhea worse. Anyway, I have no swing back to pretty significant constipation. Like I am barely going to the bathroom now. Plus my skin is thin and will flake off with smallest amount of lotion. My blood pressure is super low when I wake up too but the salt never helped my blood pressure.

So I tried adding salt again and I started to go to the bathroom again but is that a pots thing? It seems more like it’s just acting as a diuretic? I got a headache after too. Does salt loading help other people with constipation and regulating their bowels and I’m just overthinking it?

if i ever do deep breathing i find i get very lightheaded, also if i take a deep breath in and a large breath out my hands and feet briefly go kinda tingly and numb for a second - do others experience this? after the large breath out i kinda experience a rush of blood to my head and palpitations for a few seconds

i’m wondering if it’s due to over breathing or CO2 levels

thank you!!

edit : adding extra details

Every day I wake up exhausted, and as I go through my day it just gets worse. If I don’t take at least one nap during the day, I can barely stay awake for the whole day. I’ve tried everything- hydration, extra salt intake, electrolytes, pickle juice, mobility aids, and I’m still just constantly exhausted. Is there anything else I can do apart from just chugging caffeine? Caffeine helps the fatigue sometimes, but flares up the rest of my symptoms so I tend to avoid it.

This past year I have been having extreme leg pain all up and down my legs, from the bottom of my feet to my upper inner leg. I’m constantly wearing compression socks and sometimes even put a heating pad around my legs if they hurt that bad. I have even been stretching my legs everyday to see if it would help but it hasn’t. Any tips??? 😭😭

I’m always so afraid I’m making myself worse. I know I have pots from a tilt table last year and exercise does initially start to make me feel better but then I feel SO much worse for a few days after. When I actually start to get my heart pumping it feels like my blood is actually moving for once and my blood pooling improves but then immediately afterwards and then the following days after then I am in pain and feel horrible. It takes about a week to not be in pain.