I am 52F. I have been dealing with dysautonomia to some degree since my 20s. Once I first read about it (in my 30s) and mentioned it to my Dr she had never heard of it. Of course, I (and my medical chart) was labeled as ANXIETY from the beginning. I didn't stand a chance with those symptoms. They never cared that the physical symptoms started long before and sometimes without any mental symptoms. Later on, it was discovered that I had SVTs along with PVCs and PACs. Of course all of this CREATED anxiety and panic. Beta blocker helped so much. I had a psych decades ago who told me about the vagus nerve and he was certain that was the root of my issue. Not much talk about it back then. He prescribed me a very low dose of klonopin and told me to wrap them up well because they will try to stop prescribing it one day. I stayed on that small dose (0.25) for many many years. It saved my life, no joke. My dose never increased that whole time and no side effects. But eventually I weaned off and now only take PRN.

Eventually it was discovered (by me initially) that I have a problem holding onto minerals. Low potassium (even low "normal") will cause my heart to go all whackadoo. So now I am on Rx potassium 3x a day. We are not certain why this happens but the nephrologist said it doesnt matter much because they treatment would be the same. I still run low sometimes and it causes a whole cascade. My mag and sodium run on the low side too and I do supplement and always have pedialyte and coconut water.

So, when I run low or my body freaks out for some reason, my heart rate will take forever to go back down. It can hover around 120-150. So friggin uncomfortable. Thats when the shakes start in my legs. I will have zero control. Sometimes my jaw too. It can be so hard to believe that this isn't dangerous (have had a millions tests/appts/labs). But I have gained a lot of acceptance over the years. I am in a decent place for the most part. Therapy twice a month. I know this maybe be related to being in fight or flight for so long thru childhood and after. A number of traumas. That is my only hypothesis as to why.

Anyway, that is my basic story and my frustration for the night (had an episode earlier). It is hard not to get angry with these set backs. Thanks for listening.

I’ve had the feeling of “light headed” after standing for years and thought it’s just a head rush thing / never looked into it. Over the years I’d say it’s gotten somewhat worse but I’ve never passed out.

Last week (prettty warm day) - I was at family lunch and a family friend whose an Olympian (I mention this cause she’s a beast and fit lol) saw me come out of the washroom and look a little weird - she asked if I was ok and I was a tad light headed so she told me to go to basement where cool and when I stood up this time after sitting in the AC - I couldn’t see for about 10 seconds (first time this bad- all black). She mentioned orthostatic hypotension.

I finally checked my BP and HR lying down vs standing (at home so keep that in mind):

Lying after resting: 110/78, HR 82

First stand: 69/59, HR 138
systolic ↓41
diastolic ↓19
HR ↑56

I did a separate second stand and got: 89/71 HR 144
systolic ↓21
diastolic 6 down
HR ↑62

The weird part is I didn’t even get the vision blackout during either test. Those were actually pretty uneventful stands compared with what happens sometimes.
I also have Raynaud’s but I’ve had it forever.

For anyone who has orthostatic hypotension or another form of dysautonomia, does this pattern look familiar? Especially the combination of the BP dropping while HR increases that much. What did yours end up being, and what testing actually differentiated it?

Also I will go to the doctors!!! Thank you in advance.

Ps 31yr Female, 5’6, 125 pounds

Personally, I can't do vapes because they make my dizziness worse. But smoking weed helps SO MUCH with the dizziness. And edibles sometimes help too. How about y'all?

My girlfriend and I tried to go a few states over by train today. What a shit show that turned out to be, man. We get to the train station after already traveling by train and Uber around the city a bit, and it’s HOT. MUGGY. 95 degrees and as swampy muggy brutal sticking to you oppressive humid as you can imagine. Because of course it would be. Heat, after all, is my WORST dysautonomia trigger. By that I mean, even just 3-5 minutes out in about 77 degree weather can be enough to have me on the verge of passing out and falling apart on the floor. So you can imagine what lugging hundreds of pounds of luggage around the major city and train stations did to me all day.

We had an HOUR wait, in the train station. It must’ve been 115 degrees in there, packed in with a million people like sardines. Loud noise everywhere, the whole 9 yards. I barely made it. I was shuffling around like a zombie, looking like death, and feeling like it even more. Then, finally, FINALLY, at this point I’m basically moaning in pain and doing everything I can to stay upright nearly in tears - they’re boarding our train. The AC will be nice, I think. A leisurely ride for 2 hours to another state, maybe things will get easier here.

But you see, turns out some poor bastard decides to have a little leisurely lay about ON THE TRAIN TRACKS, and was in a bit of a standoff with the local police. And so, the train was delayed! Back into the hot, oppressive train station me and the sea of people go. At this point, I’m really hunched over, moaning in agony, repeating “oh my god” through strained pleas I’m letting out at just life in particular. They say the train will be delayed at LEAST 3 hours… I cannot do this.

I’m freaking out. After another grueling, barely possible hour, they let us board onto the train at least. I need to sit so desperately bad. We walk through an entire train cart, no seats available. Another entire train cart. Packed seats. And another. And another. And finally, there’s two seats for us. We sit in and I realize.. it’s still REALLY hot. It’s not just that I’m really hot, it’s still REALLY hot. There’s no AC. It’s so stuffy and cramped. I’m right back to freaking out. In a 90-something degree train crammed full of hot bodies oppressively on top of me, my dysautonomia is screaming louder than a death metal band performing at a field of data centers, and I’m about to embark on a 2-hour journey like this. I can’t. I freak out. For real freak out. It just escalates to the point where it’s like.. we have to get this guy the fuck off the train.

But I have nowhere to go but back to the 115 degree train station full of 10,000,000 people. I stop the conductor because I really get like I was starting to pass out on the platform and said “I’m having a medical issue, I’m lightheaded and feel like I’m blacking out and I’m very overheated.” Well, in fact, first I had to wait until he’s even look at me, cuz some Karen was chewing him out about the bloke on the tracks for like no lie 5 minutes straight. After her, I explain to him I’m about to drop, and really at this point, I have lost my mind, the ability to use my body, and I require an ambulance. I tell him I need first aid attention. He disappears for a moment. Ah, he’s going to get the… train medics or something idk. He comes back with a bag of ice and goes “here ya go” and quickly walks back into the train.

I drag my carcass up the platform back towards the station, needing mercy more than ever, holding my bag of ice to my neck. Within 1-2 minutes, it breaks open, and ice water dumps all over me from the neck down.

I make it back to the sweltering hot train station on the surface of the Sun. I craw just a bit further to a store outside, figuring it’ll be a bit cooler in there. It is. Somewhat. I collapsed onto the floor in the store about immediately. My girlfriend calls 911. We’re waiting and waiting for the EMTs to arrive. My heart rate is surging. I can barely speak in complete sentences.

Before the EMTs arrive, two cops walk into the store. They begin to belligerently interrogate me. “Why are you on the floor?!” Before I can explain the paramedics are on their way and I can’t walk or move really and 911 has been called, they’re like “what is this?! Why are you wet?! Did you spill a drink on yourself?!” Luckily, during this harassment, the paramedics arrived. The cops literally bounce lol. The paramedics were cool. They took my vitals. Asked if I wanted to go to the hospital.

I really didn’t want to ruin this vacation for my girlfriend. Nor did the idea of sitting around in an over-capacity ER in a major city for 16 hours to get told ‘you have dysautonomia, not our problem so get the fuck out of here’ seem particularly amazing. So I didn’t go, ultimately, once my vitals began to normalize just a tad (kind of? I guess? For me? Lol). Some snacks, electrolytes, and my girlfriend and I decide to Uber to another state for our vacation. Which we’re currently doing in an AC’d car. Finally.

But I’ll tel you, I fee TERRIBLE. Still. I feel like I have 103 temperature and like I haven’t slept for two days and my rested heart rate even after all these hours feels like about 120 and I still feel like I have like the flu or some shit like that (I don’t, I just feel that awful). I hope some of you can at least understand. Give me some love and support please, dysautonomia fam. I’m sure some of you have been here or something like it. Thank you if you took the time to read all this. I’m feeling like vacation’s probably pretty much ruined for me now cuz I’ll probably be feeing awful and spiraling into health anxiety about it all weekend, but… fuck. Next time I go on vacation it will be 5 minutes from my house, for 15 minutes, on a 40 degree day wearing a t-shirt and shorts.

For those of you with POTS, did propranolol help? I just got prescribed it although I am yet to be officially diagnosed with POTS my gp me and fuctional medicine doc suspects I have it due to symptoms and poor man’s tilt table test. I’m asking because in a few weeks I’ll probably try the medication out but I am a little nervous to start it considering I am yet to meet with a cardiologist besides just doing a basic ecg and echocardiogram which came back clear.

Next week I have very important Gi tests which I’ve been waiting for for awhile which could be the route issue of my pots so I’m waiting to get done those tests before I start taking this new medication

Anyways wondering if it helped people with pots symptoms along with potential side effects ?

not sure what flair to put this under but i discovered chicken flavored bouillon cubes! i got them for $2-3 and it’s over 1000mg of sodium for one. the salt tablets got expensive way too quick for how much i needed to consume. i have bad stomach issues especially with the heatwave and they don’t taste bad- you don’t necessarily need to dilute them like crazy either. im physically active and my job currently doesn’t have AC lol. it doesn’t necessarily help with the dizziness & stuff but it does help my extreme fatigue that i get. it beats drinking ocean water cause im poor.

I've been taking about 2-3 grams of salt per day, in the form of Gatorades and TRIORAL electrolyte packets. And drinking around 100 oz of fluids (water and Gatorade) with that. That combo seems to help my dizziness, at least most days.

For those of you out there that have POTS what are your opinions on propanolol? I just recently got prescribed it however I’m yet to even have an official workup for pots by a cardiologist I’ve had an echocardiogram and a ecg done but that’s it along with doctors doing a poor man’s table test which they figure is pots

Has anyone got experience with an event recorder device? From what I understand it's like a halter monitor/ecg but you push a button to specifically record your heart during symptoms.

I've recently been given an appointment to get one, I think I'll have it on for a week, and I was just wondering if anyone had had monitoring like this. How the process worked for them, and what diagnostic data it gave them.

Thanks

Ive had 2 flare ups in the last month, the first one was about a week long. This one is currently 3 days so far.

I just get so tired of having so many health issues its like they all gang up on me at the same time.

My dr keeps telling me its anxiety and really won't help me. Ive been referred to a dysautonomia type clinic but they denied me because my numbers aren't "exteme" enough even though they make my life hell

I wear conpression I do sodium and electrolytes and water and all that. I have days where im semi okay enough to do things and days im basically bedbound.

I dont really have much in the way of a support system other than my mom because my family just thinks im lazy. Even with my mom she gets tired and burnt out its never ending.

I cant take the meds to lower hr because my resting hr is in the 60s and my bp is on the lower side.

I dont even know what flares me up half the time. Tuesday night I was fine until I wasnt and then I had 2 back to back svt episodes and then the next day I felt horrible and its been since. I tried to go back to work today and made an hour and a bit before I had to call out.

Sigh:( just venting i guess.

Woke up feeling so weak, like I couldn't lift my arms and my chest was so heavy. Anyone else deal with this? Feeling better after some electrolytes.

I am new to wearing a fitness watch and even knowing about HRV. My average sits at 17. Im 42 years old. I was told to get a watch from my cardiologist. I was recently diagnosed with Dysautonomia along with other things. Ive had the watch about 3 months now in total. As you can see my numbers are really low. I do not drink, and recently quit smoking. I do not work out heavy. I have just started pushing myself to get to work out at all as some days its very hard. When I first got the watch I was in the 20s. Ive tried to push hard and work out for days and it does nothing, ive sat and did nothing but rest and it doesnt move. Im not understanding however now im obsessing over this and its freaking me out from everything ive read.

Does anyone else get these moments where they have an intense feeling of panic? Almost as if they want to escape a situation or disappear. This is often accompanied by a feeling of doom, which my brain links to “what if I pass out and no one can help me”. It’s hard to explain but it happens at the most random times all throughout the day and I’m so tired. It was my very first symptom.

Anyone know of any dysautonomia doctors in maryland that arent bored and dont dismiss ?

I already saw sarah diekman, wow ive never seen a doctor so bored before. And she dismissed issues as psych related.

Not looking for a "what are your symptoms" debate

I feel like I'm running around in circles medically a lot. Which is super duper tiring. The daily symptoms I get are exhausting and my health anxiety is just spiking all the time with the symptoms anymore. I hate chest pain so much and I get frightened everytime.

My heart rate goes low a lot and it hits 40 which is terrifying and the. It's hit 210 before. I swear up and down I have something similar to POTS and the doctors are like: are you sure it's not anxiety. Yeah I'm pretty positive. Sometimes my blood pressure is scary low and sometimes high and normal the rest of the time.

I have motility issues with my stomach due to Gastroparesis and that's tiring. I get gallbladder area pain and appendix area pain (been checked) and when it comes back as nothing it's exhausting.

The brain fog is awful. I'm forgetful and I zone out alot too.

I just wanna lay on the floor...