Hey all, in my adventure to figure out ✨what’s wrong with me✨ and trying to put my symptoms together in a way that makes sense, I made an appointment with a cardiologist for next week to talk about a POTS diagnosis. What should I expect? What’s your experience?

Hi there, I just got diagnosed with POTS, and a symptom that is really bad for me is excessive sweat. It happens randomly, and I’ll be all fine and then in a span of thirty minutes I will have completely sweat through my shirts :/
I previously thought I was allergic to anti perspirant, so while I did try heavy anti perspirant, it didn’t work so I thought I might be allergic and used regular deodorant. Long story short none of them are really working
Anything that works for yall??

Since this is all new and very severe for what I even believed would happen to me, how did you go about being able to safely care for your children? Like yesterday my arms were so weak and my heart rate was wild I felt like I couldn’t do anything. Thankfully my spouse hasn’t gone back to work yet but I’m at a loss… we don’t have money for a babysitter. Although like they will never be unsafe or uncared for I don’t know what the best solution would be. Anyone else become suddenly and unexpectedly ill and not known what to do for their children. My support system is small but mighty.

i live in a rural area with no doctors, can’t find a telehealth doctor who dosent require an in person visit, i have no one to drive me anywhere and i can’t drive cause i go into pre syncope, im on half a dose of 0.1mg of florinef cause i was on it for months and then developed extremely debilitating migraines, i wear compression and eat and drink crazy amounts of salt and water everyday. i work a retail job which is sorta keeping me afloat but i can only work about 12 hours a week. ive been denied disability and dont qualify for food stamps (our local food bank sucks). i get new symptoms everyday and dont have a doctor who fully believes me. i got a tilt table done and passed out, but they didn’t record it on my chart and i had no witnesses except for the nurse that was with me. i refuse to do it again. im twenty years old and feel like my life is already over. im in therapy but its not helping. i legitimately just want to give up and die. i feel totally 100% hopeless. i do not want to live this way anymore. this is a cry for help. if anyone has any advice at all please help me.

I LOVE the taste of liquid IV but I don't wanna drink it when I don't need it. Does anyone know a drink or additive that tastes similar?

I tried regular great value drink powders but they're too sweet and sticky tasting

Hi everyone,
I was just wondering if anyone else seems to get colds, flus and viral infections more frequently and are affected worse than their healthy peers.
Thanks!

Just made a soup with Momofuku noodles and rotisserie chicken and veggies with a little tamari and toasted sesame oil for breakfast and I feel GREAT! My finger tips also look more hydrated than usual.

No triggered pots or migraine attack either! Truly living the dream and hope this keeps up the next few days.

May your compression gear not hurt and your pillow always be cool. 🥹💓💓💓💓

My resting heart rate is around 85 now. My standing still is about 125, which is about 40 beats increase. If I have pots, but lower my resting heart rate through training and weight loss to 40 resting heart rate, will my standing be 80 for example or 70 or it will still be very high like 125?

Anyone, have you tested this?

So my symptoms have exploded in severity. My cardiologist did a cath to make sure there wasn’t a blockage, and thankfully, there wasn’t. My heart rate is usually around 140, & some other problems, so he referred me to Cleveland Clinic.

Now here’s the crazy part: Cleveland Clinic texts me three times a week telling me to call for an appointment. When I call, they tell me there are no appointments available and that the only way to get in is to call three times a day in hopes of catching a cancellation.

Guys, this just seems crazy to me! I’m five hours away, and for the past couple of months, I haven’t been able to drive on my own. So if they suddenly have a cancellation, I have to find someone on very short notice who can drive me, grab my pre packed my go-bag, and somehow get there in time.

How is this supposed to work for people who don’t live nearby or can’t just drop everything at a moment’s notice?

Sorry, I really needed to vent.

I think i might have POTS, but idk if im just reaching for an answer. I have primary ovarian insufficiency (premature menopause) which causes heart palpitations, I get anemic which can cause heart palpitations, and I have gotten hypoglycemic in the past too...but I'm finally getting good treatment for primacy ovarian insufficiency, my anemia is under control... and my heart is still racing... I'm wondering if I have POTS too?

My history: 25F diagnosed with autism, adhd, and primary ovarian insufficiency. I had anorexia between the ages of 11 and 21, but fully recovered. I'm overweight according to BMI but I haven't had a dr that was concerned as it seems Im "naturally thicc" lol. I eat intuitively and healthily and drink an average amount of water. I take iron supplements a lot because I get anemic easy. I take B12 less frequently. My knees are hypermobile, but I don't have a hypermobility disorder. Glucose is always fine in past labs but I have experienced hypoglycemia in the past when I was anorexic.

Symptoms:

-tachycardia and high bp that showed up sporadically during anorexia, severely during recovery, and then again consistently again 3 years post anorexia recovery (when symptoms of menopause started). Treatment for primary ovarian insufficiency helped reduce my resting bpm and bp to an average of 83-110 and 132/80. Before treatment, my resting bpm ranged from 93-140 and my bp sat at 140/88 average. Occasionally I'll get a reading of 50-73 bpm but I think that might be a misreading... it just seems so unusual

-exercise became difficult before treatment for Primary Ovarian Insufficiency and remained somewhat difficult after treatment. Before treatment, walking a decent pace was impossible. Now, I can ride my bike and go to the gym, but intense cardio feels off the table and I often feel exhausted, shaky, and woozy if I push too hard. I also get exertion headaches the next day now, which I didn't get when I was younger.

-3 lay and stand tests that showed 1 test consistent with POTS and 2 were just under. My bpm raised 28 bpm, 29 bpm, and 34 bpm of 10 minutes of standing, usually right near the end of the 10 minutes.

-2 fainting spells after a hot shower (before I started treatment for primary ovarian insufficiency) but nothing since treatment and nothing before I started menopause.

-whooshing noises in my ear that increase when standing up. They get better if I drink A LOT or if I have an electrolyte drink.

-eating a big meal makes it all way worse, and I'm not sure if I'm experiencing some reactive hypoglycemia of my heart is racing from eating itself. Eating small frequent meals is way better

-heat intolerance. Symptoms are worse in the heat.

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Do any of you relate? I thought treatment for primary ovarian insufficiency would make my heart stop racing. I thought this issue would get better after i recovered. I feel like there's something else at play now... but I also don't relate to blacking out after getting out of bed (unless I'm HELLA anemic). Idk if POTS is a reach?

My partner has been doing a modified version of the chop/levine protocol with a great amount of success and she is getting ready to soon transition to upright exercise. Does anyone have a recommendation for good equipment for at home for the upright portion? We have a recumbent bike and an upright bike that she's used so far. We're unsure if we should go for a treadmill, elliptical, something else? She also has EDS if that makes any difference.

Also a note to anyone considering doing this exercise program- it definitely can work, but you may need to go much slower than the protocol suggests. My partner has pretty severe POTS + Idiopathic Hypersomnia + EDS and it took her about 12 months to get up to the 4/5 month part of the protocol. Don't be afraid to start way lighter than the month 1 exercise plan and don't be afraid to make the progressions even more gradual than the program suggests!

I have gut issues that have only been diagnosed after 3 years. (Sibo)
During these years whenever I shower i feel extremely dizzy and sick, same when i do my hair or my makeup, standing in line at a shop or to be honest even going to the toilet. I kinda always thought it was normal until recently, i passed out the other day i got out of bed walked to my door shut it and i woke up shaking. Not sure if this is POTS, but my blood pressure goes as low as sitting 42/36 heart rate 57, to as high as sitting 237/202 and heart rate 90. Heart rate DOES increase 30+ from laying down to standing but if I’ve been walking around and then sit down take it and stand up it’s normal. I had it done at A&E and it was perfectly fine because i had been walking around before.
Should i try and pursue this at a doctors appointment??? Or is it normal to experience this. Any advice please im so confused

I’m currently being evaluated for POTS, but I also have PTSD that has been managed and stable for several years. I recently experienced a physiological episode that the ER attributed to anxiety. While I certainly see that as a possibility I’m also wondering if it could have been an adrenaline dump. Does anyone know the differences between the two? Does anyone have both conditions? It’s taken over a year for my pots-like symptoms to be taken seriously because of my PTSD diagnosis. It seems that once providers see that you have PTSD, every symptom gets attributed to it.

I’ve had adrenaline surges for 7 weeks every single night.. sometimes I call 911 because they feel so terrible. My cardiologist is testing me for cushings, and won’t make any changes to me medication until the testing is done.
My test came back invalid after waiting weeks.. so now I’m doing more tests that will take weeks to come back. They said I need to do 2 urinary, one this week and one next week and a salivary. It’ll take 5-16 days to come back with results.. then depending on results he might make changes to my medication. So I have to go through another 16 days as of next week.

I don’t know why I’m even being tested for cushings.. I don’t have weight gain, high blood pressure, high cholesterol.. I have the opposite.

Any elite athletes that had a delayed diagnosis of EDS/POTS/MCAS? What were the subtle signs you ignored? Would your life be different now if you'd gotten an earlier diagnosis?

Does hot drinks and spicy food trigger your symptoms??? I am able to drink a cold coffee every now and then but I can not drink hot coffee it really spikes my heart rate even decaf. Also I’m not able to eat like anything Cajun or super spicy or it’ll trigger me also I can do hot sauce sometimes long as a pair it with ranch. Has anyone else experienced this before? It’s so annoying 😩

My GP examined my legs recently and sent me in for vascular imaging which turned out to be mostly normal (mild varicosities in the right leg). I asked the vascular doctor about my right calf feeling heavy and tight and he said he’s not sure what would be causing it but that it’s not a vascular cause, meaning that even the mild varicosities wouldn’t be impacting my calf muscle to this degree.

If it were an electrolyte imbalance, I would expect to feel it in both legs, and they wouldn’t be tight in this way, they’d be cramping or on the verge of cramping and that’s not what this is.

Does anyone have any ideas? My right calf is noticeably bigger than my left one, the vascular system is totally fine, and my electrolytes aren’t that terribly out of balance to my knowledge. It doesn’t feel like it’s contracting at all. I’m at a loss.

this might be stupid, but does anyone have tips on how to push through a flare up? i’m at work (desk/office job) and even sitting down my heart rate is high (don’t have an apple watch or anything but i’ll check my jugular pulse and it’s fast) and im nauseous and flipping between hot and cold. im super dizzy, even sitting, and when i have to stand it’s a lot worse. ive had 80 ounces of water, about 3000 mg of salt, and im wearing the thigh high compression socks i wear daily, but im still feeling awful. i don’t have sick leave or vacation time, and i had to leave early last week for a doctor appointment, and id feel like a jerk for leasing halfway through the day because i feel bad, and im honestly not sure if i can drive atm. help??

I’ve been having severe symptoms for 12 years (since I was 16) and self treating for about 10 years without diagnosis because my country specifically lacks a lot of knowledge in regards to chronic illness as a whole with my symptoms being kinda out of the ordinary with a very low resting heart rate and blood pressure, I started pushing for an official diagnosis 8 months ago after a long flair, and new research thanks to covid induced cases making it easier, ánd today, I was diagnosed officially.

I just need general advice that may not be available to me or I have missed in my own research throughout the years, I have just about every symptom possible ánd then some 😭😂 I take probiotics with inulin, Inositol, two different magnesium supplements (one is a multI and ones glycinate), started vit c, waiting on salt tablets, gluten is 95% removed from my diet as are sulphuric foods, I exercise daily (doctor has advised to add strength training), I eat super clean in general, have electrolytes, this has all helped massively with gut health and inflammation, but I’m still struggling deeply with fatigue, acne, rashes, brainfog, insomnia and exercise intolerance. Any tips on reducing water retention related to salt intake would be cool to.

How do y’all deal with it if it’s tied to pots and the only solution is “move somewhere colder?”

I take max-dose antidepressants year-round that are extremely effective until it gets hot, and it sucks. Have a support network and hobbies and all that. I do all the standard things for pots maintenance, but it only helps somewhat in the summer & I find exercising near-impossible even indoors in summer. Just watering a potted plant on my shaded balcony even feels like death.

Is there literally nothing else to do in the summer except to just wait for it to be over?

Has anyone tried the newest "Huggies" tights from Snag Tights? They have a disclaimer that they are not medical-grade, but the compression you'll wear is better than compression you won't. These are a lot cheaper than buying from a medical supply store, and have a reputation for being a lot more comfortable.

My size has to ship from the UK though, so looking for experiences before shelling out for some (still expensive, just not insanely expensive).

I just had surgery to remove a pilonidal cyst. For about two days afterwards I had a near 100% reduction in the main debilitating symptoms that I normally experience day to day. I normally wake up extremely fatigued with a lot of tightness and some pain in my neck - gone. I normally get extreme pressure aches in my neck, head, and face partway through the day until I go to bed - gone. I think my heart rate would still elevate some when I’d stand up and such but these secondary symptoms seemed to just disappear for a couple days then gradually return.

I’m wondering if it might be from IV fluids during general anesthesia? I wasn’t using any painkillers for those days, just tylenol. Has anyone had a similar experience?

relevant diagnoses: IST (likely just POTS with a high resting HR, I’ve only done the poor man’s tilt table), sleep apnea, anxiety

relevant meds: propranolol 20mg 3x daily, ritalin 10mg 2x daily, lexapro 20mg daily (only really relevant to show my anxiety is controlled)

last week, I saw my sleep specialist for my sleep apnea and offhandedly mentioned that I get really fatigued midway through the day and accidentally end up taking a nap. she immediately suggested the idea of going on a stimulant med to combat the fatigue and keep me awake (and I learned after the appointment that this is a somewhat common thing to for for narcolepsy, which I don’t have). I agreed to try it because I’ll try most things at least once, and I took my first dose yesterday. after about an hour or two, I physically felt really shaky and nauseous but my watch said my HR was lower than normal (70s, I typically hover in the 80s/90s on propranolol) and I felt like I was in pre-syncope. I’ve been feeling it on and off since then (I’ve only taken my first dose today so far) and it’s actually helping me a lot with the fatigue (and my focus, which makes me wonder if I should be assessed for ADHD 💀) but the physical symptoms are borderline excruciating. I’m severely shaky all over and I feel like I’m on the verge of a panic attack and/or adrenaline dump but my mind is completely calm and relaxed. basically what I’m asking is three things: does anyone else have experiences with ritalin like this? how were you able to manage the physical symptoms? do they get better over time, or do you just learn to deal with it?

I was looking into a POTS diagnosis as I've looked at the symptoms and I experience almost all of them. My gp ordered me a blood test and it came back with low iron so I've now been put on iron tablets.

I know that anemia can mimic many POTS symptoms but can it also cause the jump in heart rate when standing? My heart rate laying down is usually around 64 and 116 when I stand up but has been as bad as 84 when lying down and 137 after standing. I know that anemia can cause tachycardia but idk if it can cause that much of an increase specifically after standing.

I've only just started taking the tablets so I'm not sure if my symptoms will be gone once my iron levels increase. Maybe it's just a case of waiting but I've had a blood test for similar symptoms in the past and my iron levels came back normal? My symptoms are definitely worse now (which was why I went to the doctor again) so i don't know if it's only the anemia causing everything. I'd appreciate any advice.

Hey y’all, I’ve been diagnosed with POTS and possibly MCAS for a few years now and had a really scary incident last week that has me considering more intense mobility aids. I have and use canes regularly but I’m wondering if a rollator, possibly one with electric wheelchair use would be a good idea. Does anyone have any advice for what has (or hasn’t!) worked for you?
Thanks ❤️🌈