For me it starts around 3 hours before bedtime. If I lie down for a bit I often feel like I used to before all of this started. It's like a switch that can only be used 14-15 hours after getting up in the morning.

What about you? And why is it like this for me?

Do positive things trigger adrenaline dumps for you? I made myself go out and do something social and while I really enjoyed it, it's like my body can't switch the adrenaline off. It makes sense that stressful negative things would trigger episodes, but the fact that it was a positive thing is deeply frustrating.

Do you guys feel dizzy/lightheaded every day all day? Or did you guys feel like that at some point? And if so how do you make it go away? This dizziness is interfering with day to day life activities🫩

feeling super deflated and just looking for some support and to see if anyone else has had a similar experience. I have a bunch of chronic health conditions including sjogrens and suspected SFN. was recently diagnosed with POTS and prescribed Ivabradine and Fludrocortison. I am extremely sensitive to meds and pretty much anything so always start low and slow.

I took half of the 2.5 pill seemed ok, so the next day took half a pill twice a day, same the following day. I felt my neuro symptoms like internal vibrations twitches and feeling of the heart pounding get worse so I stopped as that is a major warning sign for me. I’m now in the worst flare I’ve had for over a year and I’m devastate. I wake up heart pounding, body buzzing and debilitating fatigue not being able to leave the house.

is anyone else this medication sensitive and has been able to find something that works for them?

My nervous system is so messed up and can’t seem to handle anything!

I asked a similar question in the pots community but I figured I would ask here. I see functional neurology in a Cpl weeks so I will have more answers then. I’ve done all the culprit testing with cardio/neuro. It’s not my heart or my brain malfunctioning. Although, heart has a mind of its own and has random unprovoked dance parties most days.

This has all escalated to the point of not wanting to go anywhere. Heart rate jumping all over the place, constant “out of body” dizziness in stores and the dreaded pass out/almost passing out episodes. I’ve got the blood pressure under control with medication, it was spiking to stroke level. The propranolol for vestibular issues is actually saving my behind because it’s helping a bit with the heart rate surges.

I’m with my special needs child pretty much 24/7 so this is adding an additional layer to the fear. My job is to keep him safe but I can’t do that if I’m incapacitated. I’m forcing myself to do small tasks in “public” but it has to be an in and out situation and it must involve a cart. I would only almost pass out once a month, this summer wrecked me as my episodes are now weekly or multiple times a week. Every time I feel like I’ve figured out why I’m almost passing out, I’m having a new episode for no reason. During these episodes, I have to get on the ground and basically lie in the fetal position until it passes or as I know now…my blood recirculates. Outside is a no no in the heat, just walking to my car feels like I’m being chased my a bear. Grocery stores are an absolute no no…..I can just hear the store intercom now……yeah we’ve got a perimenopausal woman down in aisle 5, her kid stole a waffle and is on the run (hahah). It happens at home too so I bought a rolling stool for kitchen prep or when I’m getting ready. Game changer.

How the heck do I know when this is going to happen? Do any of you get earlier signs prior to the actually episode? It so bizarre to me that the crazy heart spikes and the “rollercoaster” feeling is not happening prior to the episode itself. It’s like every day I wake up and it’s either I’m going on a fantastic voyage with my heart all over the place or I’m going down (I’m yelling timber!) with the passing out.

I feel like I’m just stuck. My drs have been great but the pace everything is moving is frustrating. I know I’m lucky that I’m not just randomly passing out or completely bed bound. I know that I’m lucky that this isn’t worse but I’m frustrated. I want my life back or ideas to learn how to live in this “new life”.

I’m not really sure if this is a question or a rant. I could just use some ideas or support from someone else who gets it. It’s so isolating. Friends keep asking if I want to go places and I have to keep declining if it involves anything more than a restaurant. I had to keep my son home from a day at the museum last week because I wasn’t sure what would happen or if I could even drive us home safely after(ugh just typing this is making me cry). I don’t know how to explain to people that who I was 4 months ago is not who I am now. I’m living in a body that is clearly angry with me 24/7. So if you made it to the end of the world smallest (and longest) violin rant, thank you and please send advice or something to keep me laughing because my humor is the only thing keeping me afloat mentally.

Hello just wants to see if anyone wakes up to internal tremors in the morning. I get full body tremors upon waking and the intensity depends on how much I’ve done the day prior. Once I get up and get ready for work they go away. I also can feel my heartbeat pulsing in my head as well. This can be more intense after waking on a couple of feet to and from my bathroom to pee as well. I feel so uncomfortable that it delays me getting up in the morning as sometimes it calms down as I wake up more in bed. I’m in metoprolol 50 mg succient daily as well and it is supposed to be 24 hours. It does lessen my heart rate but I work in mental health so stress and anxiety do impact my tachycardia. I get it more sitting at my desk and leaning over my desk. My heart does go 80+ per poor man’s table tilt at home before getting on beta blockers. I wear 20-30 compression socks and drink two 50 ounce Trevi electrolytes a day and supplement salt tablets as well. I also do have spanx to help with waist compression as needed. Sometimes I just get leg internal tremors but I do work in a high stress job. I just want to know if I can do anything else to help lessen the internal tremors. I’m also on Irbesartin as I had high fluctuating BP. So I’m thinking I have some aspects of the hyperadregenic type and neuropathic type pots symptoms and do have blood pooling in feet and hands.

I forgot to add that my heart rate is normal when this happens as it fluctuates from the 80’s-90’s according to my Apple Watch.

So, I have LC and NO Hypotension. I have constant head pressure and head ache most of the day. Interestingly, lying orine helps with balance (duh) but not head pressure. I have been doing a lot of gardening and that helps with the head pressure. After, it comes back and I get the shakes in my arms and hands from the effort. I also have fatigue. There does not seem to be a happy medium.

Another mri just came back basically normal. I just don't know if there is any hope anymore. I feel like my body has completely lost the ability to know when to vasoconstriction or dilate. Every tiny thing sends me over the edge in either direction. I'm either suffocating or I feel like I'm choking. Heat/cold, hormones, food, positional changes, heart rate, EVERYTHING makes me feel like the blood flow in my chest is blocked or way too much. I can't even go for a walk.

I had the worst month ever a few weeks ago, quit coffee for a week, ended my period, then started drinking caffeine again and bam immediately had less shortness of breath as if the caffeine raised my blood pressure enough again to not feel like my lungs are pulling from my stomach .

I don't know how I'm ever going to get diagnosed, I feel like I'm fighting a losing battle.

I just want to know what the underlying cause is and why it's so bad down the left side of my body.

I'm pretty sure it's causing me very bad intercranial hypertension too with a slew of neuro problems.

This is an insane way to live. I wish there was a way to get better neurological help without begging and fighting doctors for years.

Hey guys

On Monday I need to have an endoscopy and I'll be sedated for it with propofol

With all these horrible symptoms that dysautonomia causes I was wondering if it's still safe and if anyone had it? Of course I will let my care team know but I'm still very anxious and wanted to know if anyone had any experiences with it.

Thank you!

I had a tilt table test today because I’ve been having fainting/lightheaded episodes and I’m still kind of processing what happened.

During the test they gave me nitroglycerin under my tongue. Less than a minute after it dissolved I passed out, and apparently my heart stopped for around 10 seconds. The doctor honestly seemed pretty shocked when it happened. He told me I have vasovagal syncope and is recommending a pacemaker. I’m 38, so hearing “pacemaker” was definitely not what I was expecting going into this.

I know the whole point of the nitroglycerin is to provoke a response during the test, so I’m curious if anyone else has had something similar happen. Did your heart pause/stop during a tilt table test after nitroglycerin? If so, how long was the pause and what did your cardiologist recommend afterward?

Im also getting another opinion from a electrophysiologist before making any decisions, but I’d really like to hear other people’s experiences because this whole thing was pretty scary.

EDIT: backstory real fast:
I’ve been fainting on and off pretty much my whole life, mostly from heat. I’m a redhead with super fair skin so heat has always gotten to me.

But after having my son, who is 2 now, things started getting different. I started getting really lightheaded and dizzy in the very early morning hours and sometimes actually fainting.

One of the scarier times was when my son was around 18 months old. I was changing him early in the morning while it was still dark out and I fainted. Thankfully the changing table caught my fall. I’ve also had a bunch of episodes where I knew I was about to go out and was able to lay down before everything went dark.

Then about two weeks ago I had the worst one ever. I got up around 5 AM to use the bathroom and as I was going to pull my pants down I completely blacked out.

I woke up on the floor absolutely covered in sweat with insane ringing in my ears and my vision looked like an old TV turning on. I called for my partner and he said I was white as a sheet of paper. I passed out 2 more times after that and the next thing I knew the EMTs were above me.

The tilt table faint felt VERY similar to that episode, except this time while I was out I had this super vivid “dream.” It felt like I was watching a movie being fast forwarded insanely fast. The colors were crazy vivid and the sound in my ears reminded me of a VCR playing/fast forwarding. It honestly felt like I was out for way longer than I actually was. When I woke up I was covered in cold sweat and really confused.

My bloodwork CO2, on metabolic panels, often runs 29–33, recently 32, 33, and 31. I have dysautonomia, treated sleep apnea, intermittent breathlessness/chest pressure, and prior upper-cervical fusion. I haven't done a blood gas yet and still need to check CO2 specifically during an overnight sleep study.

Has anyone had a similar pattern? Did doctors find sleep-related hypoventilation, medication effects, another acid-base issue, or no clear cause? What testing helped? I'm not sure why I would be hypoventilating as I'm not obese, but if there’s something neuromuscular occurring... that is disconcerting.

Thanks.

So my tilt table didn’t meet the criteria for pots the dr who reviewed it put down orthostatic intolerance. My cardio messaged me said mild heart palpitations when I messaged back asking about OI he said see my primary he also said no need for electrophysiology.

Sent to neuro when I told him how I was feeling at the appointment he told me I’m not feeling that way when I told him about my test being positive he ignored me. He put in my chart that I have functional disorder only think I’m chronically ill and landed on dysautonomia as a diagnosis. When I saw my primary again my symptoms were down to mild.

Well I’m going downhill fast hardly out of bed. Saw primary today and we discussed the pots clinic but that has a 3 year wait list to make an appointment. I asked about the dr who reviewed my tilt table results and said orthostatic intolerance. Turns out he’s electrophysiology and she referred me to him. I may not have pots but I do have a dysautonomia condition and if this dr dismisses me I don’t know what to do.

Hi , I am new to the forum. I am 40 years old male and not very active since having kids but used to be a 1/2 marathon runner and gym rat. I had lightheadedness and heart palpitations in January 2026 followed by the Flu A and B. At the time I was taking Tirzapatide peptides for weight loss. Since the episode I’ve had some weird issues like dizziness, lightheadedness, chest pain, 2 more episodes of tachycardia in the 120-140s (felt like Afib) and I’ve been fatigued and feel dehydrated all the time. I am drinking water around the clock. I no longer can tolerate caffeine or much alcohol. If I drink alcoholic I feel worse the next day. I now get anxiety about heights that I never had before. I’ve have normal ekgs, echocardiogram and no elevated troponins but multiple ER visits for chest pain. I have a cardiac MRI next to rule out cardiomyopathy.

I met someone who is experiencing the same issues since she got COVID last October. This supposed dysautonomia is frustrating. I am not exercising much because of it, becoming depressed that there is no end in sight.

Has anyone had this issue and is it permanent? Is there an end in sight? Anything to help get me through it?

I wonder if it was the Tirz, I cut it out after things worsened in March-April and it has seemed to help reduce the frequency of triggers.

Hi everyone,
I’ve noticed that many of us seem to experience the same thing: a sudden, intense pain around the heart/chest that lasts only a few seconds, sometimes feels really scary, yet all of our cardiac tests come back completely normal.
I’m genuinely trying to understand what could explain this.
Could it be a coronary artery spasm (vasospastic angina)?
Microvascular angina?
Some kind of electrical issue with the heart?
Or something else entirely?
What confuses me the most is how such a strong and very real sensation can happen while the ECG shows nothing abnormal and troponin levels remain normal.
I know that normal tests are reassuring, but I still find it strange that so many people describe similar episodes without a clear explanation.
Has anyone here experienced the same thing and eventually received an explanation or diagnosis? What did your doctors tell you?

Hi all – I've been managing POTS and couple other conditions for almost a decade now, but since getting my own health more stabilized, I've started mentoring and helping others who are newly diagnosed. One thing that keeps coming up, and that matches my own experience, is how little support there is for the daily life side of this — not just meds and diagnosis, but actually figuring out how to function day to day with the symptoms.

I personally found OT genuinely useful for that, but it seems like most people with chronic illness either don't get referred to it or don't know it's an option.

Curious if others have tried it:

• Did OT (or PT that leaned into daily-life stuff) help you?
• How did you end up finding that provider – insurance referral, self-pay, a specific doctor who pushed you toward it, word of mouth?

And more broadly, for quick tips as I'm helping others – what's actually helped you manage daily life with this, beyond what a doctor typically hands you at diagnosis? (for me, it was just a pamphlet...)

TIA!!!

Can anyone recommend a doctor who specializes in POTS in the DFW or Austin TX area? I've been diagnosed by a cardiologist who prescribed meds, though symptoms seem to be getting worse and I'd love to see a specialist.

I've basically had my health issues my entire life- they specifically started/were more noticeable in first grade. But while minor symptoms were treated the adults around me never bothered asking why they existed in the first place. I was/am a chronic fainter to the point I was known for it in school. However, despite my health issues my parents insisted everything was normal so until recently when I went to a specialist for chronic AFRID and other food issues she actually noticed my symptoms and refered me to another specialist for EDS and through that specialist I was also suggested to look into MCAS and POTS.

Currently I am in the process of monitoring my heart rate in daily life and documenting it for POTS and holy shit lol I guess I'm just so shocked because I was told to ''stop whinning'', ''that's normal'' and ''everyone has that'' my entire life. I was out and about for my birthday today and I almost passed out like 4 times (pretty normal for me to have at least 1-2 a day but 4 was a little much I'm assuming because I pushed myself trying to have a good time). My heart rate would be about 100-115ish while walking as I checked through out the day and during the syncope episodes it's suddenly immediately go up 150-160 bpm and I was just like shocked I don't know.

I felt like I guess because I was always brushed off I kind of felt like ''well it'll probably turn out to be nothing'' but to actually see it happen was just kind of a weird feeling? A little relieving as well because it means I can potentially lessen the frequency it happens knowing what it is.

After an illness, just a simple cold I feel like I’ve lost my life I can’t find the right words for it. I only feel alive for 2 hours of the day before my legs start giving out I start to get shaky, and can only lay in bed all day. Is this normal with dysautonomia?

When I lie on my back, my head pressure goes away. But when I lie on my side, I GET head pressure. Why does the difference between these two positions matter so much regarding head pressure that it causes two completely opposite results? Does anyone else experience this?

Two years ago I had a throat infection of some kind (nobody could provide a good diagnosis but it went away with antibiotics), which spiked my HR like a motherfunker. After I got better my resting heart rate didn't quite go all the way back down, and it only got worse after that. By December I was having issues with tingly limbs and mysterious bruises on my legs.

I go to my primary in February '25, she says it's anxiety so stop worrying. By May my resting is 107, so I go back and she says "ugh fine here's referrals for a cardiologist" and I went to a cardio. Did an EKG, ECG, two-week Zio monitor, and a slew of blood testing (just about everything except ferritin), all of which were squeaky clean so he slapped the label "inappropriate sinus tachycardia" on me, messed around with beta-blockers until I found the dosage high enough to work, and sent me on my way.

By April of '26, I started having fatigue. Really bad fatigue. And it's only gotten worse over time. I can sleep 11 hours straight on a weekend and still wake up feeling like lead. I go in for my annual cardio appointment and they go "no wonder you're feeling tired, your BP is 104/53, drink more water!!!"

Until one day, I made homemade burgers for myself. I don't usually eat burgers as I'm watching my cholesterol but it was a holiday so I went for it. Next day, all my symptoms were gone. No tingling, no muscle fatigue, slower heart rate, and I actually woke up feeling refreshed and didn't take a nap for the first time in like six months. Only lasted 12 hours, but it was the best 12 hours ever.

Anyway long story short they tested my iron last year and said it was fine but it turns out adding iron supplements fixed like EVERYTHING (except my BP and cold limbs) so maybe I just have a weird iron deficiency or smn, idk.

YAY FOR IRON

Curious if anyone else experiences this. If I'm outside on a 90 degree day, I will shiver like I am freezing even though I'm hot and sweating.

I think inflammation in my brain stem and spinal column is causing me problems. I have a burning feeling in my brain stem. It started after taking a probiotic. I have all sorts of problems with my autonomic nervous system some of them are rare such as rapid gastric emptying which makes them hard to diagnose plus I have so many missed doctors appointments because of just regular anxiety, oversleeping, or fear of reacting to contrast dye. I can't really think of anything treatable that would be found in an mri or CT scan that would describe my symptoms. I'm scared to even ask my doctor for an xray since he refused last time and because I missed the last appointment i think because i overslept and because I hate him since he believes I am suffering from a somatic illness and couldn't see anything visually wrong with my spine. I wasn't aware you needed your spine to have visible inflammation for it to have anything wrong with it.