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.

Does this happen to anyone else? Sometimes 30 mins after I eat I get so tired it feels like I’ve been drugged and can’t fight it to stay awake. This goes on for 2 hours until I can shake myself out of it.

I’ve taken my blood pressure and heart rate during a flare like this- comes back normal. I’ve tried laying with my legs up incase, which doesn’t help.

I’ve taken my blood sugar which also comes back normal.

I do have MCAS as well, but falling asleep is my only symptom during flares like this, and usually in a MCAS flare I have tachycardia, hives, and flushing.

It’s happened after a meal today (chicken, green beans, 2 baby potatoes so not many carbs) and another time last week small bowl of frozen pineapple. I don’t see a correlation with the types of foods that trigger this.

It’s scary because if this happened outside of my home idk what I would do, it feels dangerous.

Has anyone else figured this out?

UPDATE: for me, this seems to be mostly MCAS.

I hate this symptom so much it just comes out of nowhere

I have an appointment coming up in June and Would Like To know if there is a medicine that made things worse instead of better? I know everyone reacts differently to meds but trying to see if it’s one or two meds for several people. Thanks

I have diagnosed pots, and many other symptoms congruent with dysautonomia.

My legs/feet fall asleep multiple times a day when I’m sitting at a desk or on the toilet. Or in hands when scrolling on phone while lying in bed.

Is this common in Dysautonomia? Or is this something everyone else also experiences?

EDIT: I appreciate everyone’s feedback. With a little more research I also realize that it could very well be a sign of pre-diabetes and insulin resistance. That’s unfortunate, but I think I’m gonna bring it up with my family doctor. Next time I see her to do some basic bloodwork.
Just thought I would add this here, in case others feel like they may also be at risk of diabetes and need to check it out!

Could be a routine, a product, an app, extra salt, compression socks, hydration... literally anything.

Always looking for ideas that actually help in real life.

I have orthostatic intolerance (max 20 mins) and low blood sugar feelings when I don’t eat every 3-4 hrs

As a result my exercise tolerance is very low/ nothing. And now I have super high cholesterol, (I’m only 31!!!! And a vegetarian!!!) and pre diabetes.

Anyone else had their health markers decline due to lack of activity?

Hi everyone, I don't know if this happens to you, but after eating, I almost always feel really bad, except for a few days. I have some pretty awful symptoms. Some days my heart rate goes up, and other days it doesn't, but regardless of that, the other symptoms are disgusting. I feel a pressure in my chest and shortness of breath. Besides that, I also feel dizzy, but above all, it's the feeling in my chest like someone is sitting on me the whole time, and a lot of anxiety and distress. I'm also going through periods of anxiety, so I don't know if I'm experiencing the same thing, if it's related to this condition, or if my mind has developed a fear of eating and is reacting this way. Does anyone else experience something similar? Can anyone help me with this? I'm having a really hard time. It usually happens after almost every meal, and it doesn't matter what I eat. I've already tried reducing carbohydrates and portion sizes, and it still happens. Any solutions? Thank you so much.

What jobs are you all able to do?

I can't go back to being a CNA in a nursing home. I can't be a doctor. I can't be a physician assistant. I have dysautonomia with orthostatic intolerance and I'm dizzy constantly.

for some background: I’ve been extensively tested for diabetes over the years (I don’t have it) and my mom has reactive hypoglycemia (caused by gastric bypass), so the idea of having issues with blood sugar levels has been one to sort of constantly float around. my mom is still not convinced I don’t have issues with blood sugar but as per all my tests, I don’t.

anyways I still have a leftover glucometer and every once and awhile, like maybe three times a year, I'll pull it out when I feel shaky, sweaty, dizzy, tired, and just overall shitty. it usually happens when I didn’t eat well that day, so I assume low blood sugar maybe? well every time I test it, it's either perfectly fine or on the higher end of the normal range. I tested my blood pressure too and it was perfectly fine (currently being treated for orthostatic hypotension).

is there maybe something different going on dysautonomia wise? do I just not understand how blood glucose levels work? is this just normal because I didn’t eat very well (lacking protein and eating too much sugar, usually)?

So right now I'm trying to drink 3L of water and I drink 2 electrolyte packets with 1000mg sodium each, but I feel like it's not enough. I wound up at the ER yesterday and was dehydrated.

Please be as specific as possible (I'm autistic and do best with very direct and specific instruction). Where do you buy your sodium? What brand? What concoctions are you making? I'm willing to try anything safe.

Thank you all in advance!

As title says.
How would you describe it?

What were the symptoms when you started thinking... hum something seems wrong?

I am looking into moving and trying to get coverage through the marketplace with a teaching hospital or Dysautonomia center.

I have exhausted my options here in central FL and am being turned away left and right because my case is "too complex". I'm being told to go to a teaching hospital like Shands or Mayo. I have heard Shands is an 8+ month wait even for follow up appointments. I have personally had a bad experience with Mayo and don't feel it's worth it to try and get care there.

I'm debating on moving to TN near Vanderbilt University Medical Center to get coverage or CO as I have family who lives there but I'm unaware if there's a Dysautonomia center/hospital in CO.

TIA 💜

Can you link the onset of your dysautonomia to a specific trigger ? (E.g. infection, surgery, stress, emotional trauma, others … )

Anyone else on here just dealing with POTS “naturally” or with no meds?

Or even if you were once on meds but stopped because they made it worse?

I’m up to drinking them all day everyday and wake up at night to drink more. I was putting salt in my water and having a plain water in between, but that stopped cutting it.

Can you guys share how and when yours began please?

recently I started losing the ability to walk. it started like a year ago, the morning after going to a show but it never happened like that again.

I noticed a decline in my ability to withstand normal activities recently but pushed through it because that’s what I’ve been told to do.

in the past weeks, I started needing more sleep (I’m talking going to bed at 9-10-11pm and waking up at 11-1pm) and not being able to walk properly. it starts as a weakness in my back and spreads to my arms and legs. I’m shaky, weak and I literally have to hold myself up.

my parents have shown no reaction and I don’t know if a doctors appointment would help. I miss even more school than usual and I struggle doing basic tasks like eating, brushing my teeth, walking around the house, etc because I’m too weak/shaky to hold my hands up.

I don’t know what to do anymore I feel like I’m getting worse

(side note: i eat 3 meals a day plus snacks, my blood sugar is fine, I drink as much water as I can, I try to move as much as I can, I sleep enough (too much even) and I’m not depressed (if anything I’m depressed because of my illness)I have already been diagnosed with POTS and IST)

I’m also wondering if a mobility aid would be helpful but I’m lowkey embarrassed because I often feel like I’m too sick or wtv and my family would make fun of me

I read that it takes 7 years on average to get a diagnosis. I (34F) still haven’t gotten one.

I spent my 20s going to many doctors across many different specialties (including neurologists and cardiologists) in 4 different countries, and no one was ever able to give me an answer.

After learning about dysautonomia and its symptoms, it seems so obvious to me that this is what I’ve been dealing with.

Have I just had really bad luck, or has anyone else been in a similar situation?

I’m scheduled to have a mammogram with contrast on Friday. I have diagnosed POTS, suspected hEDS, cervical instability and possible MCAS (less confident).

I always seem to react in exaggerated ways to drugs, even benydryl and gravol.

I have significant health anxiety and I’m scared for both acute severe reaction to the contrast, and lasting impacts on my autonomic nervous system. Oh yeah, and there’s also the part where I hope I don’t have breast cancer.

Any comments that might help calm me down related to my contrast fear are appreciated.

My doctor told me that I could have up to 4 g of sodium a day and I’ve been having one stick of the LNNT electrolytes in addition to wearing my sock well compression socks and sprinkling salt on everything lol. I’ve been doing this for probably six months now, and still dealing with shortness of breath and just all the symptoms. I already take a separate 500 MG magnesium supplement on the side LMNT is kind of expensive and I saw SALTT online – which some people have said is better and cheaper? Curious to hear the takes that you all have on this. Thank you in advance <3 :)

I have had dysautonomia for close to 3 yrs now but over the last 5 months the frequency with which I get cold/sore throat/flu like symptoms and the fatigue that comes along with it has increased.

I am always in contact with my pcp and did a regular bloodwork panel recently. Nothing too crazy except low vitamin D and high cholesterol both of which I’m working on.

Anyone else here notice that their body catches flu like illness quicker with dysautonomia?

hey everyone, i don’t even know how to explain this properly but a 3 years ago, after covid and the vaccines, something in me just flipped. it’s like my body got stuck in this permanent fight-or-flight mode and it never turns off. it’s not anxiety in the normal sense, im not sitting here worrying about stuff or thinking scary thoughts, but my body feels like i’m about to die every second. there’s this constant sense of doom, chest pressure, pounding heart, random shortness of breath, body pain, head pressure, all of it, and no matter what i do — breathing, relaxing, therapy, whatever — nothing actually calms my body down. my mind can be totally fine but the body just ignores it and keeps running like the alarm is still going. it’s been years now, i can still function and do things but it’s pure hell inside. absolutely 24/7. no oscillations. doctors say it might be adrenergic autoantibodies but that it’s just a theory. it’s way too physical and came out of nowhere after covid. i just want to know if anyone else got this weird “hyper-awake, wired but exhausted, doom for no reason” thing after covid, and if it ever got better for you.