Has anyone found fludrocortisone helps their blood pooling symptoms?

They think I have pots.

It all started with a stroke like incident that wasn't a stroke in the tests, but to me, it was the same symptoms.

For two and a half years now I've been begging doctors to look at the back of head and neck where the pain an pressure was and is, and after a tilt table, I'm confident they are going to diagnose me with pots and send me on my way.

So I have some questions:

Does pots include severe bruising on the legs?

Does it involve these localized bulb pains in abdomen and behind knees and calves?

Is there a feeling in a single part of your skull, in between your head and neck somewhere that is full of fluid pressure? Like behind your inner ear on one side?

Does pots cause a lot of mucus buildup in your sinuses especially at night and severe amounts of post nasal drip?

Is it normal for me, only medication being mometasone, nasal steroids, to be dropping to 30bpm and 80% O2 in the night, and does pots drop your heartrate drastically when laying down?

Any and all help with these questions would be wonderful, as I am already disabled, and it has been very difficult to get doctors to even believe me about having tachycardia while standing. I had to buy an expensive watch before I was able to get anyone to admit it wasn't just anxiety and give me a neurologist and eventually this tilt table test which confirms it.

I'm most concerned about the low bpm. If this neurologist tries to put me on some of the medications you guys say lowers heartrate, I could die, and this neurologist happens to be the worst in all of Canada (he is in history books and holds the record for most retracted ans falsified medical papers...not joking)

mum really wants me to try acupuncture, i think she’s hoping it will “cure” my pots.

don’t really know why she’s willing to book me in for this but won’t buy food that i can actually eat but that’s besides the point

can acupuncture help with pots? i’ve never ever heard of this

I just found liquid IV in my country for the first time, just wondering how many sachets others usually have a day?

Ok I feel crazy because I’ve searched and searched and haven’t seen anyone else ask this - I am early in my POTS journey and trying different things. First time trying liquid IV, I bought it from our local grocery store. I tried the flavor Strawberry and liked it! Next time I tried the Strawberry Lemonade and also really liked it. I decided to order the Strawberry on Amazon in the larger pack since I use it daily and it seemed better for cost effective/quickness. It tastes SO DIFFERENT than the one I bought the first time at the store! I don’t really like the flavor anymore. Now, I’m SO CONFUSED. Is there a change in flavor? Is Amazon reputable as somewhere to order it? Am I just crazy? Please tell me someone else has experienced this or knows why the flavor would change?!

my cardiologist has switched me from 80mg of propranolol to 2.5mg of ivabradine which i’m due to start it soon so i just wanted to know what other peoples experience with it has been like.

thank you ! :)

My girlfriend has been recently diagnosed with POTS. She's starting her first job in a few weeks, and isn't sure how to handle it with her symptoms. She's freaking out a bit because of it. It's her first 100% employment job that requires her to be in an office all day.

The diagnoses was recent so she hasn't really talked to her employer about it either. This is her dream job and she doesn't want to risk anything by not doing her job well. She's never fainted because of POTS, but has strong nausea (and Emetophobia) that often forces her to pause.

Does anyone have any tips on dealing with this that I can relay to her?

Note: We're situated in Norway

I’ve always used calf compression but read somewhere that abdominal binders along with calf helps more in pots symptoms. Tights can be more expensive than buying separate calf and abdominal binders so just wondering how people have found it, if you use both or one or the other?

Context: I have POTS, CFS, GERD, MCAS & more (a lot I know I just want to make sure everyone gets the jist)

Anyways for the last week I’ve had reoccurring chest stabbing / squeezing chest pain on the lower right side of my breast. It doesn’t occur after eating and worsens when I lay down. I also get an uncomfortable feeling in my throat going down to my stomach. It also makes me feel like I need to ‘burp it out’ so I took gaviscon and eh didn’t really help.

It’s probably because I’ve been constipated for a while and it’s setting off my acid reflux. But I just want to post this to see if I should be mentally spiralling like this and get it checked out.😅

edit: It feels like my actual heart is uncomfortable. I wouldn’t say it hurts just a not so pleasant feeling

I’m wondering if it’s my POTS and tachycardia that is preventing my sleep app from recognizing I’m actually asleep, anyone else?

I recently got a cheap smart ring and I cant tell if I need to return it or if it’s a me problem lol it keeps saying I’m only sleeping for 2-4 hours even when I’ve slept 12 . Im not sure how it decides . And sometimes it thinks I’m sleeping when I’m just laying down recovering .

Maybe my heart beat is just never lowered enough ? Although it will say I’m asleep at 87bpm , I rarely go below that and am usually around 90 even at rest .

Im getting tested for pots and I'd like to know what to expect during this because not knowing beforehand really makes me nervous, any insight helps!

I’m at the stage if accepting my POTS as a life long disability and am wondering if there’s anything I could be using that could improve my quality of life?

I hung out with some friends recently. We went out to eat and I had to use the bathroom really bad. The bathroom was extremely humid and hot so i was feeling pretty potsie after getting out. I sat down at the table with my friends and was trying to say how i was feeling bad and needed water. They both just kept jokingly trying to get me to hit their vapes to feel better i guess. I jokingly responded “no girl i can’t use that you’ll literally have to take me to the hospital afterwards” we all laughed it off and i eventually got water. I feel so annoyed by this interaction looking back on it because it just felt like a slap in the face of having something pushed in front of my face they know i can’t do because of my illness, while i’m feeling bad. These friends are starting to take a toll on me i think. They barely ever check on me, and just don’t seem to take my illness seriously should i talk with them about it or just ignore it.

Does anyone know how to find a therapist that has experience with people with chronic illnesses? The last handful of therapists I've been to haven't really been for me, in that I'll tell them about my quality of life and all they can really say is "that sucks". Like word, it sure does Nancy, maybe do your job about it please??? I know they can't fix my problems but I really need some mental/emotional support and I am just flummoxed on where to find it

I’ve had a problem with finding a deodorant that actually works for me and I can’t keep buying brand after expensive ass brand to get rid of it. Today was my last straw, my manager told me a client called and complained that I smelled like sweat, which I probably was stinky but I’m very much trying here and I just am at my wits end. What do you sweaty potsies use?

I’ve always had a higher blood pressure since getting diagnosed with POTS last year but now it’s low?? I’ve been going through a flare up since last week and I started feeling really weird one day so I decided to check my blood pressure and it was low?? I stopped taking my beta blockers (propranolol) thinking it was that but I still have a low BP even after I’ve stopped taking them. Has this ever happened to anyone else?? It’s not dangerously low it’s like 100/70 but I used to be at like 150/90 usually. I have an appointment with my cardiologist next week so I guess I’ll see what he has to say…

honestly, i don’t like calling her my mum anymore. she treats me horribly, emotionally abuses me, gaslights me. she’s not my mum.

she started screaming at me to get up and stop “doing nothing” (i’m having a flare up atm and literally was unable to walk and get food, i collapsed in the kitchen and had to slowly crawl over to a bench to pull myself up)

she said i’m not an invalid (disabled person) and said i expect her to do everything for me. i asked her why she thought that and she brought up when i sent her a text why they didn’t buy anything i could eat (i have celiac disease). she then said “do i need to take you to the hospital to get rehab?!”.

i’m still a minor and got my diagnosis less than 6 months ago. none of my doctors have helped me, my parents haven’t researched into pots and what i need to get better (they say they have tho). she just screams at me to get up and stop being lazy. she said i’m a waste.

i hate this house.

i am always cold. i’m currently typing this buried under my blankets, thick sweatpants + hoodie combo, with a space heater blasting on me and i’m still freezing. i can never heat myself up but once i’m finally warm, i’m TOO warm and i take forever to cool down!!!! 😭 this is so exhausting.

I've felt amazing during the day. It lasts exactly 4 hours for me. But when it wears off at night I end up plummeting to 50 to 45 bpms and passing out. Is this normal?

TW! Mentions of mental health, and depression.

Hi! Long story short, I just recently found out I have POTs a few weeks ago, and my mental health has completely tanked. I was struggling very badly before, but this has just been the cherry on top. I couldn’t do anything on my 21st birthday, I couldn’t go on this trip with my partner, me developing POTs has made my partner extremely depressed and I constantly just feel horrible for him for even having to deal with me. He is very supportive and helps me but he’s still in this phase where he thinks all of this will go away :(

Everyday basically he asks me to go do things with him, invites me to do stuff with his friends and him, invites me to concerts, etc, and I can’t go. I might even be missing his graduation in a few days if I still am in this flare. It’s been rough. I feel very depressed and defeated right now :/

How do you guys keep yourselves sane with POTs? I feel very just, low, right now.

does anyone have low blood pressure that goes up to almost normal when they stand??? but still feels terrible either way?? constant adrenaline? always lightheaded?

like wtf??? how does one even go about treating this

I started my morning waking up with a heart rate of 58 I felt off walked to the kitchen spiked to 125 just chilling, I went to physical therapy told my doctor how I was feeling he suggested the ER my heart rate was irregular and he suspected Afib.

When I got to the ER the nurse noticed it too, so they hook me up to the EKG. I’m laying down of course it comes out perfect. So basically the staff made fun of me. Saying “caffeine can spike your HR” “I think you have anxiety” “you need to exercise more” I told them I am in the process of getting diagnosed for pots (thanks to my awesome PT who actually took time to listen and understand me) my symptoms are more prevalent standing. I had shortness of breath and chest pains. Basically dismissed my worries. So I cried bc I hate feeling dramatic and just that no one is listening. Of course it doesn’t show anything you are having me lay down taking vitals when I feel on laying down. Just so frustrating

I am laying in bed regretting all life choices even going. Having the worst palpitations migraine and nausea. LOL goodnight I just needed to rant. I wish women were listened to more and everything wasn’t dismissed so easy and they were nicer. I wish pots was talked about more. :/

I’ve been looking into compression socks/garments to help with the blood pooling and heard they also help with dizziness. However I’m worried about them making me overheat as I often run hot and cold. Does anyone know of any good brands or if maybe due to the overheating problem compression socks aren’t for me ? Thankyou for any suggestions

Anybody know if Tylenol reacts with Propranolol?

for the past few days i’ve been getting mad palpitations, always before falling asleep and it’s driving me crazy. i can’t even sleep. sometimes it feels like my heart stops and i get a panic attack immediately after. i’ve been on 2.5mg of beta blockers for like a week now, due to my svt. when do they usually start kicking in? what else should i do?

I’m 5’9 about 140lbs F. My resting hr is 55, standing averages 140-150 (no drop in bp). Dr. does not want to perform a tilt table test because my symptoms aren’t “worrying” enough. (Dr. doesn’t think its necessary to see other specialist so won’t refer me at this point) Which i suppose is true because I’ve never fainted in my life but I’m constantly fatigued due to fast HR. I have to spend 4+ hours on my feet at work so I literally have no energy for anything. I kind of recently discovered this about myself, used to never measure HR/BP until someone mentioned POTS causes extreme fatigue. I’ve heard electrolytes and compression can help, what else should I be doing? I exercise 3-4 times a week but perhaps I should stop this due to high HR.

I’m leaving town next week after a year. I’m scared and nervous. I haven’t walked a lot in a while, and I’m scared of feeling faint and just ruining the trip for everyone. I live in Texas and it is hot. Any tips are so appreciated.

I got a POTs diagnosis in January when I was having some bad symptoms, enough that I couldn’t walk more than 250m and would have to lay down, and couldn’t walk up my stairs. That lasted about a month, varying in severity until my doctor put me on beta blockers and I felt GREAT!

Until the past two weeks. I feel all the symptoms again- not a severe as in January, but I’m just really confused. How does one know if it’s a flare up? Do flare ups last for weeks? Would increasing my dosage of meds help (I’m meeting with my doctor later this week)….. I also have no idea if maybe I’m drinking too much electrolytes and salt pills? This is all very new to me, and I’m trying to listen to my body, but I don’t really have a frame of reference or context….

who tried chop and benefited? i don’t know if its right for me. beta blockers haven’t helped, salt doesn’t help much

what were your previous symptoms? did you feel doomed often? here's mine to see if we are similar if it would benefit me:

burning -flushing that comes with headache -head pressure -awful adrenaline -body aches- tiredness -eyes feel crossed -doomed feeling- tachycardia- heat waves - frequent feeling like when you get up too fast and haven’t eaten, like everything goes slow mo and black ish for a second. - derealization - very bad throat tightness - swollen nose - dizziness that doesn’t subside from laying down

it’s pretty bad idk what to do next. i’ve tried metoprolol, it gave me bad chest pains helped heart rate tho. atenolol gave me throat closing feeling worse midodrine gave me a feverish feeling and hollowness sensation in my chest florinef made me extremely dizzy (maybe. still trying to see if it was that. i also had PMS & cold )

cardiologist says there’s no more FDA options. idk what to do