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Hi does anyone have symptoms that worsen on certain times? mine started 2 months ago off a cipro reaction. I wake up bad in the morning with SOB. at 8Am. It subsides until about 2-3Pm then a click occurs in my nervous system or brain and all of the sudden I start feeling bad and I get shortness of breath. it's so weird but it consumes my entire life right now. Has anyone treated this?

Whichever symptoms are or used to be scary or upsetting in some other way to you personally. How have you learned to cope? If you’ve never been caught off guard or scared by any of your symptoms, this question isn’t for you.

I haven't been in yet to speak with my primary care provider, but I got the results back from wearing a Zio monitor for a week and the data (which, visually, to my untrained eye, are rather alarming) indicate supraventricular tachycardia.

The internet seems to have it that this isn't s super-dangerous condition, so whatever, but what I want to know is how likely it is that I still might have POTS. So far what I deal with hasn't been debilitating, just some heavy palpitations, anxiety, and one syncope out of nowhere. I just want some reassurance that I won't end up disabled to the point of not being able to work.

Any experience or insight is appreciated. Thanks.

Has anyone tried this? The online reviews seem to be really mixed.

Healthy people can drink alcohol, smoke weed, we cant do that due to pots. What else could we take to chill us out and make us feel a little high/good in the head and body? I'd rather not try benzos

I'm wondering how long it took you all to get your tilt table results (if you recall)? I had autonomic testing (including breathing, valsalva, TTT, QSART) done in October, just a tad under 6 weeks ago, and I'm still waiting on my results.

My PCP contacted the hospital who conducted my autonomic testing last week, but we haven't heard back yet.

I've been experiencing some symptoms that possibly align with dysautonomia (the worst are lightheadedness, head pressure, neck pain, and nausea while upright). My PCP said my symptoms "can't be POTS" as my HR doesn't go to 200 BPM. (My HR typically is 40s-50s BPM while lying down and 85-110 BPM while standing). A cardiologist I saw months ago attributed my symptoms to orthostatic hypotension.

I'm not sure if this question is allowed here, so mods feel free to remove if this question isn't appropriate.

Man with ME/CFS here, but this has happened to me for years before my ME "officially" started.

I used to take a shower daily and always had to use lukewarm water and even then the exertion of washing and drying myself would leave me hot and sweaty for about an hour. People were often surprised to see me in just a thin shirt in morning in winter.

If I eat a bowl of porridge the heat just keeps radiating out of me for a long time afterwards and I feel uncomfortably hot and have to remove clothing to cool down.

For years I've drunk a lot of water each day, partly due to thirst and partly due to the cooling effect.

I think this difficulty with thermoregulation was probably a warning symptom of preexisting dysautonomia that led in part to the ME.

Now that I have ME, overheating like this can trigger post-exertional malaise, e.g. if I have a hot bath it can make me feel foggy and ill for several days afterwards.

And now, even minor exertion like getting out of a chair and walking across the room too quickly can leave me overheated (and my heart rate raised) and I have to then rest until everything has calmed down again.

Do others here struggle with overheating?

So sometimes my legs feel extremely weak and it can make walking and standing hard for me. I will stand and it just feels like my legs are just giving up on me and my whole body feels heavy. And other times my lower part of the body (and also my hands) will just go numb and/or experience pins and needles (basically neuropathy symptoms). I will have to hold on to the walls and furniture in my home to help keep me up. Outside of the two times I have fainted I haven't actually fallen and struggled to get back up (I have been close though). It caused me to be completely bedridden outside of forcing myself into work. I've been on midodrine and salt tablets for over a month now and thankfully I haven't dealt with this as much since (except for the neuropathy) but it still happens especially on bad flare days. Idk if this is dysautonomia related or not but does anyone else here experience this too? Idk it feels kind of isolating.

Also weirdly I sometimes feel like I'm faking this or being overdramatic (even though I'm not). But I think that's just a result of family members downplaying my experiences and accusing me of being overdramatic despite my specialists reassuring me that's not true.

What is it? It's also not accompanied by other symptoms you'd expect from sudden drop in OH, so I'm befuddled.

Okay so I’ve had pots or these symptoms at there worst the last 3 years. And I’ve felt nauseous many times. But today I feel very sick so I’m sure I have a vomit bug. I’m terrified. Because I’m quite severe pots not super severe but not mild. If I puke I think it will seriously kill me. My heart squeezes and pounds and reaches 190 sometime sitting up in bed. And coughing makes me feel like I’m going to pass out. Being sick I seriously think would kill me. Had anybody here went through a sickness bug during having pots and been alright cause it’s giving me the fear. I’m too weak to be having a bug right now.

Bit disgusting detail but when I gag my heart shoots to 170 and I can’t breathe for 2 mins after. If I be sick I seriously think it will cause my heart to just give up

Hey all. I have had adequate blood volume, but my electrolytes have been running low and I've continually had to go in to saline bags. From my understanding, volume is typically our issue with dysautonomia? My sodium got so low that my bp bottomed out (and hr) and I was admitted, but my kidney function tests were "fantastic" (egfr 125) and my abdominal ct indicated normal kidneys. Anybody else experienced this?

I will say that around 2 months ago my potassium started to run low so my cardio put me on 20ER daily (had a bunch of PVCs, knew something was off) and I've never had low potassium issues. They are baffled. My exacerbated symptoms are 100% due to this. After therapy and getting my electrolytes back to normal levels, my BP/hr go back to normal.

Wondering if anyone can relate and share tips during this frankly miserable time!

A few weeks ago I had a massive flare up after getting my covid and flu shots. It kicked my usually-mild nausea into overdrive. Primary thinks it's a gallbladder issue, especially since I've had dull pain in the gallbladder area for months (I thought it was a pulled/knotted muscle in ribs).

Gastro can't see me for 6 weeks, but the constant nausea is driving me crazy. The only thing that seems to help is sucking ginger candy and I'm worried my teeth are going to rot from it.

I already struggle with appetite regulation but this is something else. Worst of all, when I do feel slightly hungry, I can only stand eating carbs. Even the thought of eating savory foods like meat or beans or veggies has me feeling ill. When I force myself to take a few bites of a "normal" dinner, I am often punished hours later when I am woken up in the middle of the night with unbearable nausea. I've already started losing weight, which is alarming because I'm very thin to begin with.

Anyway, I guess this turned into a bit of a vent. I figured you guys could relate. And if you have any tips for my survival over the next month and a half, please share.

I started on Ivabradine this week after a year of Metoprolol with minimal improvement. My lowest resting heart rate has been 90, typically raising as high as 190 when walking. I was shocked by how well the Ivabradine is working so far. My heart rate didn’t raise over 120 yesterday, going as low as 60 when sitting down which I’ve never experienced. But… the sense of impending doom is horrible. Has anyone else experienced this? It’s almost like my body has gotten so used to my heart going berserk that it doesn’t know how to cope with just being normal? I was told this is normal and will improve as my body adjusted - curious to hear other people’s experiences or suggestions for combatting this because it’s SO unsettling.

I have been sick with what I assume is the common cold but it will not go away! First started with sore throat Monday the 18th at night felt kinda sore and when I woke up thr 19th I was like oh no I have strep or tonsillitis because it was like swallowing razors!

Then started sneezing a lot, nose got stuffy and runny, throat pain let up and was more sinus related- this then caused post nasal drip which made my throat hurt again (not as bad) then the coughing on top of it all. Coughing so much my muscles in my back hurt 😫

Now it's day 13 and still sick. Throat isn't very sore, maybe a tad bit on the one side. Runny stuffy nose blowing constantly my nose is RAW. Coughing lots because I have phlegm in my lungs that you can hear rattling when I breathe lol, cankers and a sore spot on the roof of my mouth, exhausted- and as of yesterday and today my face is fairly pink.

I can't take cold meds because the meds I'm on so I've been sticking to tylenol and advil as needed and mucinex. I haven't had a fever this entire time. No tests to test for covid so who knows if it's that.

My mom's coworker had it and gave it to my mom and my mom gave it to me. She's about 2 days ahead of me sick wise and still has some lingering sinus pressure and groggily sounded throat.

When will it END.

Anyone else get burning muscle pain that causes weakness when standing? Every time I stand for more than a few minutes, especially on bad days, my leg muscles get very tense, weak, and burn. Sometimes it’s so bad I could fall down. It’s worse even standing still and somewhat gets better when moving. Of course I get blurry vision when standing etc too. Blood pooling? Thanks

I tried them for 2 weeks, but I don’t want to become dependent, so I’ve been tapering off for the past 4 days. Can anyone share their experience?

26F History of dysautonomia- tilt table test scheduled but diagnosed based off symptoms.

Today has been weird. I was diagnosed with pneumonia a week ago (cleared now) and had a bad reaction to an antibiotic which did kick start some tachycardia. This morning I was sitting down scrolling my phone when it felt like my heart just contracted and all the pressure in world I couldn’t get a breath in. Soon after this my heart started racing, which has happened, but I got that contracting pain again. The only time I’ve felt this pain was when I had severe postpartum preeclampsia, so it was worrisome especially as it became more frequent and kept being followed by tachycardia.

I went to ED, genuinely concerned because it felt like an elephant on my chest at this point and too winded to walk far. EKG, CT scan and blood work came back fine. Pneumonia was gone, a small node on lungs they believe is from pneumonia but nothing with my heart.

Has anyone felt like they were having a heart attack from pain side aligning with tachycardia? This was 9/10 and I’m still slightly weary of this :(

I really don’t tolerate flat shoes as much as platform sneakers.

Am I imagining things or is there any science to this?

It’s literally as though I feel better the more off the floor I am. If my foot is flat on the floor, it’s like I feel uncomfortable and heavy. I strangely feel more secure the more off the floor I am, in a chunky heel. Not too high mind you, but I find a platform heel to be super confortable. It’s honestly like my legs even feel better. To the point I get annoyed with people (my mother) who say flat shoes are always best: not for me!

Am I weird or has anyone else experienced this?!

Hi there,

I was wondering if anyone has experience with an exercise physiologist for dysautonomia or POTS? I have my first appointment coming up, and while it’s something I’ve never tried before, I’m eager to see how it could help.

Unfortunately, I’ve lost the ability to exercise as I used to. Just seven months ago, I was doing Pilates four times a week and walking 6 km four days a week. I had such an active lifestyle, including extensive travel, and now I can barely make it out the door. When I do attempt exercise, I tend to overdo it because I struggle to recognize my new limits. I’m hoping that working with an expert will help me better understand and manage my physical limitations.

This has been the most physically and psychologically challenging experience of my life so far—it truly feels like my body is in rehab mode.

If you’ve had any experiences with exercise physiology for dysautonomia or POTS, I’d really appreciate it if you could share them with me.

Thank you!

Alright y’all what meds work best for hyperpots? I am pretty confident that I have hyperpots due to an increased blood pressure at rest and it gets high when I stand. During an episode I’ve recorded it at 171/110 and I get adrenaline dumps almost every morning. I’m on 80mg of propranolol (30mg in the morning, 20mg in the evening and 30mg at night) and jt just isn’t cutting it. My quality of life is crap. If my heart rate spikes to 130’s+ then I’m done until my next dose, I can’t do anything without spiking after that and heart rate will jump 15bpm from rolling over in bed. I went out for an hour and was spiking the whole time, the anxiety didn’t help as I’ve developed agoraphobia. Despite medication when I got home my heart rate was stuck at high 80’s-90’s resting even when asleep and that’s not my norm. Spiked to 115 when asleep. Was stuck in bed the next day and had an adrenaline dump of 164 when I woke up. Highest it’s been in the mornings since starting medication. Also took clonazepam when I went out. I will say I’ve deconditioned A LOT and have been basically bed bound, but I still feel like my heart rate shouldn’t be spiking as often as it is. I just increased my dose of propranolol last week as well. My blood pressure is still elevated too!!

I think I'm having an electrolyte imbalance but unsure. I don't have health insurance and trying to avoid a hospital trip...

About a week ago I started to notice I was more sleepy and fatigued than usual. Then appetite started to change... Feeling nauseated and no appetite. I noticed I had been clinching my jaw a lot more and was getting tension headaches but my brain also felt weird (tingly or something) and really bad brain fog. Then 3 days ago I woke up and my body felt super heavy and my heart rate was jumping high with any movement and standing. I've been having a lot of adrenaline dumps.

Summary of symptoms :

Increased fatigue (more than usual) Body heaviness & weakness Muscle twitching (a few light cramps in my neck) No appetite & nauseous Increased resting heart rate High heart rate with movement Brain/head feels weird Headaches Light abdominal pain Feeling unbalanced /vision is weird Increased nervousness Increased adrenaline dumps

A lot of these symptoms can be from dysautonomia but they got more intense kind of out of nowhere and it kind of seems like electrolytes imbalance.

I'm drinking 1-2 gatorlyte a day for the last few days and at times it seemed it helped but then the symptoms would come on again.

My pee is very clear and feels like water goes right through me within minutes.

Anyone else experience electrolyte imbalance? Was it similar?

How many of you have tried something like TCM (traditional Chinese medicine) or acupuncture?

If you have, has it worked or helped relieve symptoms?

This has been consistently happening to me especially after eating. My blood sugar is fine. My vitals look normal. I become barely conscious and get bad internal tremors. Has anyone else had this

I get SEARING pain in my trapezius muscles, and my neck gets stiff, like the muscles have turned to cement. What helps y'all?

Edit: thanks everyone. I'm scheduling an appointment to get a referral to PT/massage therapy, and to get my cervical spine looked at. I appreciate your help!

I have a whole host of autonomic nervous system problems but have never had problems swallowing before. Lately though a lot of the time when I go to swallow I have almost panic attack/dissociative episode type feelings and get very nauseous. To clarify I don’t have any physical trouble swallowing but something about the action makes my brain go haywire. Has anyone experienced this or know what might be causing it?

The fact that it’s not just agoraphobia keeping me from leaving my house is such a defeating feeling.

I learned what happens when I push myself and I’m feeling so discouraged. All night my heart rate was sitting in the 90’s occasionally falling to the high 80’s which is not my normal on propranolol. I experienced the most intense heart palpitations I have ever had and usually I’m not phased by them but this one made me nervous. I woke up this morning and had an adrenaline dump which lasted about 20 minutes and my heart rate got as high as 164, again out of my norm. Now that my propranolol is kicking in, it seems to be calming down and going into my normal range but what do I do? I’m so sick of being housebound and almost bedbound. I have been stuck in a functional freeze and I want to get out of it so badly. I was only out for an hour yesterday and all I did was meet the lady who is gonna take my cat, didn’t even get out of my car and go to the clinic for my urine test. I didn’t do anything strenuous. I’m going to rest today, but do I keep pushing myself on days I feel okay? I had immense anxiety the whole time I was out so maybe that contributed to all of this? I literally lay in bed almost all day, only getting up to do small things like load and reload the dishwasher or making an effort to stand for 5-10 minutes. I feel so discouraged and I don’t know where to go from here.

Hi all!

I have autonomic dysfunction (quite generalised) and have been STRUGGLING with my periods since quite a young age. They are horrific…..

I am scheduled in at some point next year for laparoscopic surgery too see what’s going on as they think I have endo on my bladder, bowels and obviously uterus and ovaries. My mum had horrific endo and adenomyosis hence why they think it’s endo due to how bad my periods are.

However I have been getting this horrible pain in my right lower tummy which is agonising. It comes and goes and I think it’s my period but I’m not too sure. It happens occasionally on my left side too.

I’m just coming on here to see if anyone else’s periods have been impacted by this Illness? As I’m struggling a little at the moment x

So I have been dealing with some heart issues for the past 8 weeks. My heart rate has been going as high as 180s to as low as 40s. I had my first cardiologist appointment last week. The doctor has me wearing a two week heart monitor and I go in for an echo on Monday December 2nd. The issues is work has been giving me heck for all this. Firstly they have a clinic on site and I have been going to the clinic whenever I had issues with my heart and the nurse would send me home if I’m incapable of working that day and you receive no point/ punishment for leaving work. Well this has happened multiple times until I get see my cardiologist. Now they are telling me if the nurse sends me home I will be pointed from now on and that just for me, and now that I have seen my cardiologist my work has requested work restrictions, I got them, then they said my restrictions have no end date so they need a new one. My doctor typed up a new restriction can’t lift over 20lbs and it has no end date. I am worried when I go in to work they will fire me due to this new restriction but it is there only because my journey has just begun. I have no diagnosis yet so he’s not sure how long to make it until we find out more. Another factor is I work in a factory setting, right now my line is not running and won’t be for a few months so I have been moved to doing laundry which has worked out great for me so the duties I am fulfilling right now aren’t even my normal responsibilities. I also found out at my appointment I am having issues with high blood pressure. I’m sure the doctor will figure this out soon and I will be back to normal so I don’t want to be fired over this? Is there any advice out there on what I could do? They have offered me to take a 6month leave no pay in order to save my job, which I will definitely accept if it comes down to it…. I’m just wondering what my other options are. I am only a 23y female and have no family in my life that can help.