You’re awake but exhausted. Adrenaline surging out of nowhere every time you are about to fall asleep. You’re nauseous, sweaty, shivering/vibrating. Heart beating hard, maybe even doing some palpitations. You’ve done good sleep hygiene and routine, you’re cozy, yet your body won’t let you go into actual sleep.

What do you do? I’m 6mo post partum and usually get like this the second night after a bad night of sleep when I’m up with the baby. My only solution has been benzo (Ativan) which works every time, but I’m out and don’t necessarily want to get dependent on them.

What else works? Or do you just ride it out? I did that one time and legit didn’t get any sleep at all….

Im not sure how to get this under control but it's probably going to kill me one day. When I encounter a highly stressful situation, my heart rate will SKYROCKET and I will just about faint, my muscles will be tense and I can't walk. It takes hours, sometimes days to recover from even a short episode. For example the other night, I thought someone was breaking into my house. My heart rate shot up to nearly 200 in the matter of seconds. I was asleep and my heart rate is a healthy 50-60 when asleep. It only lasted about 15 seconds before going back down to 150 then 120 and hovered around 100 for the next several hours. Does anyone else experience this?

I've had dysautonomia for 20 years. My endocrinologist asked me if I had ever checked my blood sugar to see if that was the cause. I said no, so she called me in a meter and the whole monty crew.

That shit hurts. My poor lil fingers are so damn mad.

New respect for those who are diabetic.

Total side note: level has been 78, 84, and 124 (after eating)

Hiya, I have hyper andrenergic symptoms, would anyone recommend taking an SSRI to help the symptoms? I’ve been prescribed sertraline but my husband has heard bad things about it and is cautious…

Is there an SSRI anyone would particularly recommend for adrenaline and hyper arousal type symptoms? Thanks! 🙏🏻

Hi all. So I have had (assumed) dysautonomia all my life. (But I didn’t know what was likely wrong with me until I did my own research) I began feeling sick in elementary school. All the weird symptoms came and went. And over time they have gotten worse I am now 34 with 4 kids of my own. And I struggle with every issue (I know you all understand) My main issues this last few months have been weakness anytime I exert myself in the slightest. (I don’t lay around) but if I do just a little more or extra- I feel my heart rate increase just like running up my stairs I go from 80bpm to 150. It drops right away again but the sick feelings I get from that- the weakness and tremors. Hello legs. It’s awful.! I can’t do anything without feeling unwell. I’m always nauseous and have over 50 other strange symptoms that just cycle. I get stuck in fight or flight a lot so I lean towards wondering if I have hyper-pots.

But I can’t get a dang diagnosis! My PCP referred me to cardiology as I do have PSVT (can be 250 bpm) as well. And haven’t seen a cardiologist outside of the ER.

Well the whole cardiology office DENIED me. Said that since my referral said possible POTS. They do NOT see POTS patients AT ALL. And that my symtoms can be managed at home. WHAT!!! I don’t even have a diagnosis I haven’t ever had a TTT.!

I called to ask them why they won’t see me being that I don’t have any diagnosis. And they said since my 2 day holter monitor was relatively normal and indicated dysautonomia (heart rate fluctuated from 40 bpm to 190 bpm) and I never exercised at all. They said they can’t see me.

I wanted to cry. I did cry. I was so angry. I told the MA on the phone that I guess I’ll just end up in the hospital because they won’t even give me 10 minutes to have a consult!

Has this happened to anyone ???

Hi guys I hope this is the right place to post this. If not could someone point me in the right direction.

So I don’t have any diagnosis I’m just looking for advice. I will be calling my doctors on Monday.

Lately I’ve been experiencing extreme lightheadedness upon standing up (from either lying or sitting) or sitting up from lying down and also from bending over to pick something off the floor.

My blood pressure is usually on the lower end of normal 110/60-120/80 but it’s never caused me any issues until recently where the lightheadedness has become so intense I’m stumbling and unable to walk straight for a moment or two.

I’ve also been experiencing increased heart rate while at rest (iwatch notifying when I’ve been inactive for over 10 mins and heart rate is over 100bpm) it also happens more often after I’ve been eating but can happen on its own.

Has anyone had any experience with this or have any idea what it could be ? Like I said I will be calling my doctor Monday just looking for advice/reassurance in the meantime.

Thanks.

Hi all - first time reddit poster, long time Internet lurker. This is a resource I've come to often to see stories like mine and I just need a quiet place to check-in about my own journey.

I'm 33 years old and living in Brooklyn. Since about 2018, I've had on-and-off issues with fainting, fatigue, chronic pelvic and neurological pain, tremor in my legs, back and hands, and other things. I'd have these flare ups once or twice a year, sometimes landing me in the hospital, with no answers. Always told to follow up with my gynecologist about endometriosis, who always told me she didn't think that was the case. It was all infrequent and manageable enough that I just continued on.

In October of 2024 it happened again - woke up with severe pain in my left side and pelvis, wondered if I had a cyst rupture or something. ER visit showed nothing serious and told me to follow up with gynecology. But this time, my symptoms didn't subside on their own. It all just got worse. I started having debilitating tremors and heart palpitations, frequent fainting episodes, chest pain in addition to the now daily pain in my side, waist and legs. I hardly have the energy to climb the stairs to my apartment, let alone go to the laundromat, grocery store, or the gym.

The stress of not knowing has been agonizing as someone who has lived with OCD all my life and generally manages it well after years of practice and learning. And doctors love to just call out stress and anxiety and send you home. I've had my mental health condition my entire life. I've worked my ass off to understand it, manage it. I've gone through highly stressful times in my life without these physical symptoms. I know what is happening to my body now is not simply stress.

After more specialists than I can count and embarrassing ER visits where I'm told I'm fine when I can barely stand, I'm now waiting on two critical appointments: a gynecological surgeon to discuss a laparoscopy to diagnose endometriosis (my mother and both grandmothers had it), and a cardiologist to discuss POTS, which wasn't something I knew about until an ER doctor mentioned it to me.

But now I see all these stories of doctors thinking these are "trendy" conditions that people are diagnosing themselves with and I just don't know what to think or feel. All I have is that in the last six months, my body has felt like it's gone completely haywire. I was a strong, active woman who worked out, had a happy social life, and successful career. Now, if I can shower and answer my emails, it's a successful day. I ask myself if Long Covid is at play, since I had the virus about a month before this all started, though I thought I had recovered fine.

My biggest fear is dying (which should be obvious, but it took me a while to learn I actually was genuinely scared of this). My second biggest fear is never finding out what is wrong with me and it completely ruining the life I've built for myself. I now see things about the combination of POTS and endo being brutal and I just want to believe it'll be possible for me to have a semi-normal, independent life again. I just want to be better. I just want to not live in fear of what new symptoms every day will be, feeling like my body is a ticking time-bomb. Like if I don't find the answer - know what wire to cut - then I'm going to lose everything.

If you read, thank you. I don't know what I want out of this other than some hope that things can possibly get better.

okay, please tell me I'm not the only one who pushes under their left abdomen and feels a pop or click.

I've had this for years. It tends to happen when I've eaten or I'm backed up and bloated.

21/F. I have been on beta blockers (Bisoprolol) for almost a week which have been amazing for my heart rate and has gone back to normal almost already, the issue is in day 4 I had two episodes of chest pain, palpitations and pre-syncope but also experienced a tight throat feeling. My heart rate stayed normal this time too. I’m wondering if I have the right diagnosis as my understanding is that the pain associated with Inappropriate Sinus Tachycardia should go away with a reduced heart rate? I wake up in the morning feeling perfectly okay, but then by 4pm I start to go downhill and if i don’t have an epsiode I’m stuck with pinching and sharp chest pains left and right, and pain in my lower ribs. I’ve still been light headed and also experiencing vertigo, the colours I was experiencing which migraines have settled but I keep getting sharp pains in my head…

I was really happy thinking I’d got to the bottom of this.

Keeping a long story short, we had black mold all throughout my old house (moved out 10 months ago) unbeknownst to us (due to negligence of a family member) and were exposed for nearly 4 years.

My symptoms started 4-5 months after the initial mold exposure and got worse over time. The research I’ve seen says that mold exposure typically is more respiratory, according to “conventional medicine.” There have been new developments in the role of mold exposure and the subsequent biotoxins and physiological changes to the immune system though, but have not been widely accepted by larger medical institutes yet.

So, my question to Reddit is, does anyone have any anecdotal stories regarding this type etiology of dysautonomia?

My cardiologist started me on low dose ivabradine 3 weeks ago. It has worked well to keep my resting heart rate at about 80 bpm and walking around 110 bpm, but if I do something more strenuous like hand washing the car or raking my heart rate will still jump to 140 bpm like before I started ivabradine and I feel very shakey and jittery just like before. When I take the ivabradine even at low dose it leaves me feeling tired and nauseous, weak with low energy and a little lightheaded and sometimes not so bad. But it doesn't stop big heart rate spikes when I am using my arms to do physical chores. I don't know if I should try and up my dose of Ivabradine. Did a higher dose lower your heart rate while doing more difficult activities?

TLDR: despite nOH diagnosis from cardio, Neuro diagnosed FND. What should I do?

Six months ago I woke up and had extreme leg weakness, heaviness. A few weeks later, I started having faintness, blurred vision, heart palpitations, chest tightness. MRIs, EMG, myositis panels normal. Somewhat (not critically) low vitamin D and potassium. The month before this happened, I was diagnosed with sero-negative RA and Hashimotos. On Monday, I had the tilt table test. When they inserted the isoproterenol, blood pressure dropped to 90/25, I vomited and felt like I was going to die. Heart rate never compensated (stayed under 125). Dr said neurogenic orthostatic hypotension. On Tuesday I went to Neuro specialist out of town that I was referred to by my local neuro after he did the EMG and it was normal. The specialist turned out to specialize in FND. Without receiving my time table results, he gave me a preliminary diagnosis of FND. He is scheduling more autonomic testing but I'm concerned he has a bias that could prevent him from exploring completely physiological reasons for my symptoms. My cardio prescribed midrodone, and between that, compression stockings, and electrolytes, I'm feeling significantly better.

Has anyone else been labeled with FND? Did you flight back, and how?

I explained a hard situation that I just went through and how a flare up got in the way of my plans.

A person told me that POTS is just a postural issue when you stand up or sit down too fast. They assured me that they also have POTS, and they believe my “excuse” was BS because POTS isn’t a chronic illness.

I feel as if I was kind of stabbed in the gut. This condition has changed my way of living. For me, and many others, it’s more than just standing or sitting too fast.

I feel really hurt. Does anyone else have suggestions on how to cope with this? I’ve never been told that POTS is “nothing.” I am a bit hurt and I feel invalidated.

Good morning, I am from hyperpots, I wanted to know if you had already tried neurofeedback I found it in quite a few testimonials but I do not know if it is useful for hyperpots Thank you!

I’m finally scheduled for a tilt table test after the assumption of POTS for two years and a Dysautonomia diagnosis this year. When I was scheduling the hospital said I’m required to bring someone with me and stay for the duration to drive me home…. Well I’m a single mother with closest family 4 hours away, no friends close enough to take an entire day off work to sit at the hospital. Is it really necessary to have someone with you? Can I push back on the requirement if I take an Uber? Is the tilt table test really worth it?

I've noticed that before a really bad flare of low BP, tremors, insomnia, etc. I will be constipated for days.

Would appreciate advice on how to approach my next steps with my new symptoms

Hi! I’m a 29 F. After a long couple years since 2019-2020 and seeing many specialists, I was dx with vestibular migraines about a year or 2 ago.

Now with that said, I’ve been seeing a lot of similarities with what I’ve dealt with in terms of dysautonomia, since I was younger and newer symptoms ESPECIALLY around my PMS/ menstrual cycle.

Things like cold/ purple feet/ hands even when it wasn’t really cold. My legs feeling really heavy or always going numb. My terrible ability to be a good temperature. Either way too hot or too cold, and now I’ve been dealing with night sweats so bad I’m drenched from head to toe and SHIVERING like crazy. Feeling like my face is always flushed and hot but then my body is cold. Light and sound sensitivity and chronic bilateral tinnitus I’ve had for as long as I can remember.

Couple weeks ago I was sick with something doctors couldn’t figure out but I had constant low grade fevers for a good 4 days.

Late last year I had a migraine so bad I now have a floater in my left eye which i let my neuro and eye doc know but seemed like it was brushed off?

Constantly feeling dizzy or unstable (at times I bump into things or head butted my own wall and door at night because I didn’t know where my body was in space lol) which migraine meds help but to an extent.

Extremely exhausted and hx of insomnia. But my fatigue is like the moment I wake up for work I want to come home and sleep already.

I feel like I want to find another doctor in cardiology or neurology that can help me navigate what’s going on.. because I feel like I’m playing down my symptoms but I feel like there’s something more.

Appreciate it all in advance ❤️

I’ve had dysautonomia for about 5 years now since first covid infection but suspected it was always there in ways. Had all typical symptoms tachycardia, low standing BP, dizziness, terrible brain fog the works but I could manage. I tried out a right sided Stellate ganglion block about two months ago and right after the block my heart rate just went silent and I could no longer feel it in my chest. I monitor everything closely and I now have bradycardia. My BP is still low and this combination has caused everything to get worse. My fatigue is unbearable now and I’ve had to stop working which is a huge thing since I was barely getting by before and I’m only 26 so I need to be paying rent at least. Honestly all the other things I can accept besides the fact that since the block I have not felt like myself and I don’t recognize myself at all. When I’m with my loved ones I can barely communicate and I cannot emotionally react to anything. I also can’t keep track of time anymore and everything feels so fake. My symptoms are so bad that I don’t enjoy my time alone or my sleep. Cardiologist and neuro are stumped at what to do and are reluctant to do anything and I feel like I don’t even exist anymore like I’m not attached to my life or my being. I’ve already gave up on the idea of having a real career or life but I want to be able to enjoy my time in my body when I can and this is crushing me. So sorry for trauma dumping but I have nobody around me who remotely understands what I’m feeling. Thanks for reading and wishing peace and rest for all of you❤️🩵

Like at my doctor's appointment when I was laying down my rhr was 91 and when I stood it spiked to 120 and stayed there

Now I do the same thing at home and my rhr was 72 and spikes to 164, by minute two tho it's down to 112 and at min 5 it's at 102 and it stays there

I'm literally just scared of doctors bc of sth that happened once but like how on earth am I supposed to prove to the doctor what the problem is if it refuses to act the same way 😭

And did you ever end up tracking your glucose with a monitor and realize that your fasting levels were fine but throughout the day the numbers varied problematically?

So, if I do not get to college, i need a solid plan. And even if I do get to college, I'll still need this plan for after college

Ok. So, if I don't get into college (or after college), I'll be living alone because I can't live with any of my friends. They all have careers they are pursuing. I, meanwhile, do not. They are all likely gonna get married/live with someone else, which boots me out of the picture. So, I'll be living alone

So with that. It will be very, very hard for me to find a full time job. I cannot work in fast food, or big grocery stores, or teaching, animating, building, phone calls, or analyzing data. Idk if a online job would be good, because I get really bad brain fog after long periods of time of being on the computer, and that also just sounds depressing to me. All those jobs I likely cannot work because of my dysautonomia, depression, anxiety and high functioning autism. I'd be able to handle a part time job, but full time? I have absolutely no idea

So, how do I force myself to do it anyway? That's what everyone tells me anyway. They tell me to just "force myself", that if I really try I can do it. Someone told me when I'm a bit older I should apply for disability so I can work a part time job but I disagree. Other people need that more, and if I force myself really hard I'll be able to do it. Anyway, I'd need lots of work experience already to get it. I'm also high functioning autistic, and my chronic illness isn't as visible as other disabilities. So that's off the table

I need to learn how to force myself to work a full time job, 5 days a week, 8 hour shifts somehow. I need a plan.

I also am unsure about college. Because if it ends up taking more than four years, I'll need a plan then too, because I don't know how I'd handle that. Also, since there isn't much jobs I can work, there isn't much point in putting thousands of dollars into a degree I won't use.

My cardiologist has prescribed meds for me to take but they have side effects. What medications work best for you to manage your symptoms.

Hello, those of you with hyperadrenergic POTS, is insomnia a main symptom?

I experience adrenaline surges awake everytime I start to fall asleep, over and over again.

I have a high resting heart rate, I feel wired during the day as if my nervous system is in overdrive constantly and can’t switch off to rest.

This all started after a fall and hitting my head and injuring my neck. I’ve had these symptoms for 5 weeks now

Has anyone else experienced insomnia like this? And has anyone found medications which resolve the symptoms or managed to recover entirely? Thanks 🙏🏻😊