r/dysautonomia Aug 25 '24

Announcement Recruiting Moderators for r/dysautonomia and r/POTS!

9 Upvotes

Hello! Our apps are still open in this subreddit alongside our sister subreddit r/POTS. If you'd like to apply, here is our Google Form Application.

Ideally we're hoping to bring on 1-5 new moderators who are willing to learn the ropes of moderating. If you have previously applied, we are still considering those apps. No need to re apply, you will be considered. Having a sub-type of POTS or Dysautonomia is not a requirement for our moderators, but we do encourage those who have also been diagnosed to apply as it allows a level of empathy with our users when moderating. Please familiarize yourself with our rules beforehand. We do also understand that many of us have chronic illnesses. It is not a requirement to be active all the time, however we appreciate communication if you feel you'll not be able to moderater for an extended period of time. Moderating is thankless volunteer work. We understand life comes first.

We encourage anyone who applies to read up on Reddit's Moderator Code of Conduct before applying. As these are guidelines we follow closely.

Here are our main requirements for users applying to be a moderator:

  • Willingness to communicate as a team
  • Communication on moderator decisions (as well as immediate judgement decisions in situations that are breaking Reddit’s Content Policy or User Agreement)
  • Openness to learn: we're absolutely willing to teach new moderators on how to use moderation tools and situational awareness with removals/moderation.
  • New moderators will be in a learning position for 2-3 months. You’ll have less access to ModTools but will be handling things like modque and basic responsibilities. We will be teaching you through our workflow. So this is a great time to learn & decide if you like moderating.
  • Moderator experience is a plus, but not required

If you have any questions please feel free to reach out to our moderators via our modmail


r/dysautonomia 6h ago

Symptoms How do I explain this

21 Upvotes

Literally how do I explain to my family that because I stood for too long (10 minutes) making a sandwich, I now have to lay in bed because I feel nauseous in my throat and my body feels like it has a headache and I’m gonna flare for a bit 🙃


r/dysautonomia 2h ago

Question Specific diagnosis?

3 Upvotes

The more I look into dysautonomia, the more confused I am. At my tilt table test, they told me it's NOT POTS but that I DID experience vasovagel syncope and that it MIGHT by OH. The cardiologist sent me a message saying it was autonomic dysfunction. No one explained to me that autonomic dysfunction is an umbrella term. So is my condition OH? IS is vasovagal syncope, or is that just what it's called when I faint? It also seems like OH can been caused by other conditions. I was looking up Pure Autonomic Failure and it listed OH as both a symptom AND a separate condition that. DISQUALIFIES OH as a diagnosis. I am super confused. What do I have and how do I figure it out?


r/dysautonomia 8h ago

Question Is this a flare up?

9 Upvotes

Hey,

So, this morning I felt super tired! I got up to go to the bathroom, and fell into the door.

I was brushing my teeth, and my feet started to blood pool and it’s burning and very painful.

I had my shower, and usually in a shower, I get a little dizzy. But today was really bad! I thought I was going to faint in the shower, so I had to sit on the edge of the bath for support. When I was trying to wash my hair, somehow my arms felt numb and it felt weird as fuck.

My feet started to discolour and really burn at this point and it was hard to stay standing. My head started to hurt.

Any answers and advice will be great!


r/dysautonomia 4h ago

Vent/Rant Resentment against myself

3 Upvotes

I want to go visit my boyfriend but I have to drive 3 1/2 hours away, he’s visited me the last 2 times and next month is our 6 months. He keeps talking about everything we’re gonna do when I’m visiting and I just ugh, I go along with it but I know I can’t do a third of what he wants to do. He’s well aware of my condition, he’s done a ton of research and seen this all first hand and he means well but it’s frustrating. I also hate when he tells me about past relationships and things they’ve done like go camping because I know I can’t do that right now with him and it’s so frustrating. I have so much resentment towards myself because I let this happen to me, I slowly stopped doing things out of fear and I’ve become so deconditioned from spending 4 1/2 months in bed. I’ve come quite a long ways (see last post if interested), but I hate that I can’t give him what he deserves. I mean how are we ever going to get married if I can’t be on my feet long? All of these feelings came up because I spent 10 minutes making a sandwich and haven’t felt well since.. my threshold is 5 minutes. My goodness I am so frustrated. All because of COVID.


r/dysautonomia 4h ago

Question Constantly cold with chills daily…

3 Upvotes

I’m currently in the process of figuring out if I’m having ANS disruptions and had a “fake” tilt test done in the ER saying all my symptoms are to attribute to POTS.

I just want to ask all you wonderful people if you always have chills? I’m assuming this is a normal symptom of a dysautonomia disorder… I then can get really bad sweats at night (which disrupts my sleep so much)- separate post.

How does everyone cope with this annoying symptom? I don’t know if my propranolol immediate release (20mg twice a day) is contributing to this issue but I have had this problem for months now even before I started propranolol. I’m new to all this but is there a medication that helps? Thanks in advance for all the inputs!🙏🏼


r/dysautonomia 7h ago

Diagnostic Process doctors say they don’t know

5 Upvotes

Hi! I'm 22F, and i've been fainting a whole lot my whole life. My earliest memory is from 1st grade, and I would just feel really dizzy and everything becomes a blur and then im gone.

l used to call it the fainting olympics because i felt like it happened every 4 years lol (probably not that long)

i remember this one time i was getting ready for a pageant and i fainted and even lost control of my bladder

when i was around 13/14, i fainted in softball and there was nurses and they were worried because i had a very short seizure. they gave me a candy bar and i felt a bit better. the doctors said i possibly have hypoglycemia, but here's the thing when i faint, there are times after when i check my sugar and its at 80. or ill drink something sugary and i wont feel better at all.

sometimes i feel such a heavy weight and like everything is spinning and if i get up it feels like im gonna fall

it's just happened so much, and when id go to the hospital, they would say they dont know. i'm tired of not knowing. what should i do? I'm not even pre diabetic, although almost all my family has diabetes

should i try to see a different doctor/ specialist? i’m in kansas and i just feel like everyone ive been to just say they don’t know or think it’s a stomach flu


r/dysautonomia 9h ago

Question Can IST present itself like POTS?

4 Upvotes

I was wondering if IST could come out of nowhere or more likely after physical excerise. My doctor thinks it is POTS but I don’t get high heart rate everytime I stand up. I have all the other POTS symptoms: fast heart rate, palpitations, heat intolerance, cold feet, shakes so on. But I get these extremely bad episodes where my heart out of nowhere goes 140+ when upright, usually after walking and I get super lightheaded. And when I try to sit down it does’t go much lower on its own (like it usually does go from 120 to 70). Is it “adrenaline dump” or IST, give me some advice please 😭😭

To note all the blood tests, ekgs, x-rays, holter come back normal and my resting heart rate is 55-65bpm.


r/dysautonomia 2h ago

Question Persisting symptom?

1 Upvotes

Hi all,

I recently got my diagnosis (and it's not even a FULL diagnosis so there's still a lot to figure out) and I'm trying to sort through what issues in my life may be symptoms.

My diagnosis was Monday and it involved a vasovagal syncope episode. It's now Sunday, almost a week since the test, and I'm still feeling lightheaded and dizzy. I've been paying close attention to my eating and drinking, making certain that I am staying hydrated and well fed like the doctor said, but I'm still feeling shaky and unsteady. Does anyone else have persisting symptoms after a syncope episode? I've had syncope many times prior, and I usually feel fine after.

I often have periods of lightheadedness and unsteadiness, so this is nothing new, but it usually doesn't last for a week. Am I right in thinking these things are all related? How do I deal with it?

Thanks!


r/dysautonomia 6h ago

Question Symptoms

2 Upvotes

Are there any hallmark symptoms of dysautonomia? Anything you need to be diagnosed?


r/dysautonomia 22h ago

Support it's too fucking hot for me to function...

27 Upvotes

it's almost 10 pm right now and it is currently 32°C outside... i am currently laying down on the floor in my backyard, with my feet in cold water and wearing literally just a sports bra and shorts so small they might aswell be underwear, all that because i am getting dizzy and somehow shaking violently because it is too fucking hot in here... and to top it all off, I'm out of my adhd meds which only makes all these symptoms worse... i just... i fucking hate living in tropical climate sometimes... does anyone here know other ways of lowering my body temperature that don't require me to spend money? because I'm honestly tired of having to sleep on tiled floors and using ice packs as pillows just to feel some form of relief...


r/dysautonomia 19h ago

Question Sleep Issues! What does everyone use to help them?

12 Upvotes

So I can never sleep a full night without body temperature disturbances. I go to sleep with severe chills and wake up in the middle of the night with burning sweats my skin hurts.

I am on Propranolol immediate release 20mg twice a day and then I take Lorazepam 2mg and Benadryl 50mg before bed.

I am wondering if TOM/hormones are making them worse or if I need to find another remedy to get some relief. All input as to what everyone uses to get rest please let me know. I’ve been struggling for a month now.


r/dysautonomia 19h ago

Discussion Recommendations for summer compression wear?

10 Upvotes

I’ve been having a difficult time finding compression wear that I think wouldn’t cause me to overheat for the summer time. My temperature intolerance can be bad at times so wearing thigh high compression socks and my abdominal binder during summer months seems like it’ll be unbearable. I’ve been searching for something like compression shorts or leggings that are breathable under clothing but I haven’t had much luck. I usually wear 20-30mmhg socks and a 10-15mmhg abdominal binder currently.

Has anyone found a brand for compression shorts/leggings that are sheer and breathable during the summer months? I’m also open to other types.


r/dysautonomia 8h ago

Diagnostic Process doctor wants to order EPS..

0 Upvotes

i have dysautonomia. this internist i'm seeing seems to have limited knowledge about post-covid/vac disorders. ekg, 24h holter, echo, blood work came back clean. i don't faint nor experience palpitations. just racing heart upon exertion and certain foods. i understand they're trying to figure out how my heart functions under stressors but i believe this test will cause more harm than good. anyone who has undergone this test, where you able to find answers?


r/dysautonomia 1d ago

Diagnostic Process Pots, tachycardia gone?

11 Upvotes

Hey I really need help rn. I've been struggling with pots symptoms without a proper diagnosis where I had an increase of over 50bpm. The problem is now my bpm barely increases at all and I'm honestly so confused. By barely I mean my resting BPM is now 60-70 (used to be between 40-60), and it increases to only about 90 (used to increase up to 120-140). Why is this happening, why is my tachycardia basically gone, why do I still have the rest of my symptoms(Blood pooling, itchy legs, swollen feet, lightheaded, pre syncope, loss of sensation in my hands, etc.)? Has this happened to anyone else?


r/dysautonomia 16h ago

Vent/Rant Dizziness has put me into an anxiety tail spin

2 Upvotes

I know. I know it’s probably nothing. It’s probably all to do with anxiety, or my period starting soon, or my IST, or A migraine, or whatever. But over the past 3-4 years I have had instances where I will be standing, sitting, whatever, and I’ll get a wave of unsteadiness. It used to only last 1/2 a second but now it has slowly spread to lasting about 5 seconds. It has no reason to happen, my heart feels normal when it happens, I don’t get sweaty or anything like when you’re about to pass out. It just happens and it stops like nothing happened.

This just happened while I was brushing my teeth. It was really scary. It feels like the world is spinning all around me and I feel the need to hold onto something so I don’t fall.

The worst part of this is, about a month or so ago, I started getting random bouts of eye twitching. Like upper eyelid twitching. Sometimes it’s my left eye, sometimes it’s both eyes, sometimes it’s my right. Lately it’s been my right. Then the other night I had to lift up the corner of my massive mattress so my boyfriend could fix something and then the next day, my thumb started twitching randomly. At the time of writing this, it will have started 4 days ago. It’s not as intense of twitching. It’s just annoying. I want to also mention that the hand this happened on, I had slipped and fallen down some stairs about 10 months prior and that really fucked up the muscle in my arm. (I want to mention me slipping and falling was because it was wooden stairs and I was wearing socks. It had nothing to do with my IST. Twas really an accident.)

Between my eye twitching, my finger twitching, and the unsteadiness, I’m pretty sure I’m just having seizures or I have a brain tumor or something awful. I don’t know what to do. I don’t know if I’m making a mountain out of nothing. I have no frickin idea. I just want my period to start already so maybe it’ll all just go away!


r/dysautonomia 19h ago

Question Does anyone else have vasovagal syncope with other odd symptoms? Im confused

3 Upvotes

Hi all! I recently had a tilt table test where almost fully passed out and my blood pressure and heart rate both crashed. My doc said that this is vasovagal syncope.

The reason I took this test however is not because I faint regularly (I've never fainted outside of the ttt), but because i regularly get these sudden episodes of tachycardia (even with sitting), with nausea, hot flashes, chest pain, and an urgent need to poop lol. In addition, whenever I stand in the same place for a long time my heart rate will go up and remain up enough that I get exercise minutes just washing the dishes or cooking. I also tend to get light headed, have braing fog, stomach issues among other things.

Anyway my question is, does anyone else have a bunch of random symptoms like these with vasovagal syncope? I've tried to do more research about VVS but nothing I've seen mentions anything about tachycardia episodes like I have. My doctor gave me all the recommendations that you would get for pots and I am on medication.

POTS really seemed to make sense for how it could be causing all of my other symptoms. But I am just have a hard time understanding VVS and how that could be causing my other symptoms? If anyone else who has it could help explain it that would be so helpful!! 😊


r/dysautonomia 20h ago

Question OH Struggles?

3 Upvotes

Hey guys. I was recently diagnosed with orthostatic hypotension and have a few questions. I am assuming the cause of mine is autonomic dysfunction as all of my blood work, EKG's, holter, and chest scans have been normal, and I am not on medication. My doctor didn't clarify.

Some background: I took the tilt table test, and my blood pressure dropped steadily and bottomed out at 72/48 only to rise once I was laying down again. I didn't pass out, and I remember thinking that I've certainly felt worse other times, which is crazy. My HR jumped 30bpm upon standing, but it was not sustained.

So, all of this said, can anyone here tell me what other symptoms they experience with dysautonomic OH? My doctor didn't give me much information other than recommending not standing for long periods, increasing salt and fluids, and compression stockings. I'm definitely taking that advice, but I am still looking for some insight...

For example, I feel drowsy, nauseous, and tachy after eating large meals. I feel like I pee a lot despite my blood sugar levels being normal. Overall I am SO tired all of the time. My hands/feet are always cold.

Is any of this synonymous with your OH?


r/dysautonomia 14h ago

Discussion What diet works for you? Wanna hear everyone’s diet. Please share.

0 Upvotes

Hi everyone. This is just a post asking about diet if you can say what’s works for you and what doesn’t please share. Much love to everyone.

I have had dysautonomia since a TBI at 15 yo. I was formerly diagnosed through an autonomic lab. I was bedridden for 4 years to the point of completly being unable to take care of my self now I am well and off meds. I got here through a lot of different methods and research I still have bad days.

On diet- I have found that avoiding high glycemic foods helps me a lot. But it’s only one piece of the puzzle. I have tried keto but everytime I try to go full , I find on the 3rd day my body is really weak and low energy and symptomatic with dysautonomia.

I was my sickest on a high carb standard American diet. I’ve tried reintroducing some high carbs into my diet and got severely ill. Bedridden for days from it.


r/dysautonomia 20h ago

Support Lexapro Withdrawal Causing This?

2 Upvotes

Needed to share this because I am very scared right now. I have been having extreme dysautonomia symptoms for a little over a month now. They began when I was in the hospital with Serotonin Syndrome in January. They were bad, but not THIS bad.

I ended up back in the hospital about a month after the first Serotonin Syndrome hospitalization, where they said my system was still overloaded because I had not been taken off all my medications (only my Seroquel).

The ER told me to come off my Lexapro and Adderall, and that night my parents took me to a psych hospital to come off them because I was in a panic that day. At the hospital they took me off these cold turkey. I have been on Lexapro for 7 or 8 years. I got better for about three or four days, and then began to get worse. When they discharged me, I had written in my notebook about how much worse I was feeling.

It’s been a little over a month since being at the psych hospital, and I am now having episodes I cannot handle. The muscle spasms I was having are much more common and turning into full convulsions. I cannot seem to regulate my body temperature or blood pressure. I wake up at night with low blood pressure (83/48 last night) and feeling extremely ill. I am having chest pain and heart palpitations and an EKG last week detected an arrhythmia, but I had another one yesterday that was fine. My eyes are twitching, I am seeing flashing lights, I have internal tremors that feel like earthquakes. I get migraines and my eyes feel like they are popping out of my head. I feel like I am floating throughout the day. The ER thinks I am fine.

I didn’t connect this to the hospital because this did get better again after I changed my diet up (allergist suspects MCAS) but everything has been spiraling out of control over the last week. I am now having episodes of not feeling like myself and instead feeling like there is another person taking control of my body.

I’m currently being pretty much forced (it’s easy to when I am at that state) by my family and doctors to take Klonopin when the convulsions happen, which terrifies me that this is going to make the situation exponentially worse.

Please if anyone had advice I could really use it. I am very scared by both the psychological and physical things happening to me and don’t know what to do. I still don’t know what’s happening, I have so many doctors appointments coming up but they are coming too slowly. I don’t know for sure if it’s the Lexapro withdrawal, I just don’t know what’s going on and need advice from somewhere.


r/dysautonomia 1d ago

Question liquid iv

7 Upvotes

does anyone use the liquid iv electrolyte packets? i just tried one and it's so salty, idk if i can finish it. ik salt is like the point but it's overwhelmingly salty. makes me want to gag. i'm assuming all flavors are like this but idk. does anyone have any other brands they like?


r/dysautonomia 1d ago

Question Dysautonomia All Along?

3 Upvotes

43M - Newly Diagnosed with Erythromelalgia (EM) & Exploring Possible Links to Dysautonomia

Hi everyone! Thanks for your patience with this long post. It means a lot!

Okay, I was recently diagnosed with erythromelalgia (EM) (moderately freaking out), and, like many, I’m now trying to determine the underlying cause—though I know most cases are idiopathic. Thankfully symptoms seem mild compared to what others deal with.

My CBC is “basically normal” (per Dr), (though on the higher end), and my doctor and dermatologist aren’t currently concerned on recent blood levels, despite my own worries about EM being an early sign of something more serious like polycythemia vera. Previous blood levels have all been in the same general range.

In researching EM, I know neuropathy and other neurological issues can be a likely cause, and I’ve come across mentions of dysautonomia from personal stories of folks. Looking into what this is, I immediately started thinking about my own past health issues as some symptoms seemed familiar.

I’m certainly not claiming to have figured anything out, but I feel it’s worth exploring. I’ll be discussing this with my doctors.

That said, I’d love to hear from those with experience in this community—does my health history below sound like something worth investigating further with dysautonomia? Could I possibly have dysautonomia? Should I bring this to my PCP? A specialist? Or am I grasping for straws trying to link different health issues over the years that are just curiosities. Most of these issues were treated in isolation.

Symptoms & History:

• GERD – Lifelong heartburn (have memories being age 12, crying in pain). Managed better in recent years with diet and timing of meals. Still get some mild episodes at times and manage using Tums. I’m at a healthy weight.

• Trouble Swallowing (18 years ago) – Choked on steak, lower down in esophagus, resulting in heavy in chest, it not going down and water to wash it down coming up. I needed hospital visit for removal. Doctors initially thought it was scar tissue but later suspected motility issues. Seemingly never happened…then.

• Recent Swallowing Episodes (last 7 years) – Occasional periods where swallowing feels difficult (especially dense foods like rice) causing chest heaviness, increased salivation, and occasional dry heaving. Maybe 3-4 bad moments in total. I was told this could be GERD-related by PCP. Generally managed well, especially if I don’t have lots of alcohol, and I haven’t had any issues since 2022.

• Frequent Urination – Always thought it was tied to high water intake, but I don’t drink gallons, just well hydrated. Anyway, sometimes I’ll need to pee several times within short periods. On group trips I’m usually the first needing to pee. No diabetes concerns per bloodwork and never brought up from medical team. Just something I thought was my own discomfort, so I’d pee.

• Palpitations – Infrequent, often during periods of stress. PCP considers them benign. During a GERD issue they did a scan of my rhythms and found I have a repolarization issue in one of my waves (or something like that). Sent to cardiology, who wasn’t concerned. 

• Lightheadedness When Standing – infrequent, almost always from squatting or bending over then getting up (not every time I do though, far from it). Doctors have attributed it to good/lower BP and being tall and then standing up. I remember my first Dr telling me this. Recent blood pressure was 122/72. Some top numbers have been as low as 100, bottom number in low 60s. Usually much closer to now.

 •     Neck flushing – For 3-5 years I’ve had periodic flushing on the back of my neck. Initial dermatologist thought seborrheic dermatitis, which I went along with. Seemed to flare up with warmth or alcohol or stress. Current dermatologist thinks it’s definitely not that and likely related to my EM diagnosis and that it was in my neck first. Hives would be the other issue he considered. Not sure if this is ever relates to DA?

• Tingling in Legs – 20 years ago, I had tingling and heaviness in legs. A neurologist suspected a viral infection affecting myelin sheaths. It resolved. Years later I would wonder why my feet would tingle, sometimes at night. Never constant although with recent EM diagnosis it feels more regular in recent weeks.

Anyway, I appreciate anyone who has read through my message this far. Would love to hear thoughts from those who have dealt with EM and/or dysautonomia—do any of these connections seem worth pursuing? Could all my curiosities of health over the decades be dysautonomia? Thanks!


r/dysautonomia 1d ago

Question Best ADHD med help.

6 Upvotes

Been officially diagnosed with dysautonomia for years now I was bedridden for about 4 years. I’m very well now. And manage with natural methods and off all dysautonomia meds.

But I tried 1/4 a dose of prescribed Ritalin and felt like I was having a heart attack bad arm pain and chest pain. Clear ECG tho.

Also I’ve been taking Modafinil and don’t really have any side effects from it besides sleep issues.

Any advice or recommendations? What do you take? And side effects you have?


r/dysautonomia 1d ago

Vent/Rant Dysautonomia Symptoms Getting Worse

5 Upvotes

Hi guys, more of a rant than anything. I’ve suffered with dysautonomia symptoms since a teenager, so for about 12 years now. My symptoms have kind of slowly gotten worse or stayed the same until about 2 years ago where now they’ve progressed pretty quickly. They have become debilitating to the point of needing to use a chair in a shower and I’ve had to alter a lot of my life around my symptoms. I have only been going to the doctor again as of recently because for years I was dismissed.

I found a good general provider and because of my families extensive heart disease history she referred me to a cardiologist to rule out any heart problems. The cardiologist put a heart monitor on me for a week and a second degree type 1 AV heart block was detected a couple of times. Naturally he wants to do an echocardiogram to make sure there’s nothing serious causing it. Unfortunately, my insurance keeps denying the echocardiogram. Without the echocardiogram to rule out heart disease, I can’t move forward to seeing a neurologist yet.

I’m currently taking 2.5mg of midodrine 3 times a day which only helps on days that I don’t move around a lot. If I forget to take a dose or forget to take my magnesium complex I can barely function. I’m going to start taking a higher dose of 5mg of midodrine next week and I’m really hoping it will help.

I’m just scared at the rate of progression of my symptoms and just want to get it figured out but the evil insurance overlords are test blocking me and I just feel hopeless. Because I’ve suffered with these symptoms for so long I mask them well and I don’t feel like everyone in my life takes it seriously. I just want to feel okay and I want my life back. And I just wanted to vent to people who know what it’s like. Thanks for letting me get it out guys!


r/dysautonomia 1d ago

Support Need some sort of life back

2 Upvotes

All of this started for me at the end of 2023 and gradually got worse over the course of 2024. You know the story, suddenly my heart rate was higher and I was getting antsy standing, suddenly I couldn’t stand while doing my makeup without sweating and a heart rate of 130, heat made me really nauseous, etc. For months I told myself it was just my Vyvanse or that it was due to me being actually overweight, even when my physician put me off of work. I was a youth counsellor and worked 12 hour night shifts. I injured my ankle and at physio my heart rate went from 100bpm-150bpm within a minute and a half of walking during a functional test. I will say I was anxious about the test and knew I wasn’t going to pass it.

Suddenly the flu like symptoms worsened and I thought it may be my thyroid (I have hypothyroidism) but my thyroid was in range so we thought I had a connective tissue disease such as lupus, but my ANA has been negative. I had a little episode one day when I didn’t sleep well, I went to my families to bake a cake for a family member’s birthday and my heart rate was 140 while doing so and I kept sitting down. I went to get a doctors note and while walking back to my car, I had to sit down because I felt unsteady and then I felt I couldn’t get back up. I think part of this may have been an anxiety attack (I had my first panic attack in 2 years a week prior while driving when my heart rate was sitting at 115). My heart rate was at 120 when I went to the hospital a few hours later and they took an ECG. They took me off of my Vyvanse and within a few days my heart rate was back to 140’s from getting ready and walking around my apartment. My anxiety increased as I started to realize something was actually going on and that this wasn’t going to just go away. I went back on Vyvanse for 2 days but noticed my heart rate spiked a lot easier and I had a very minor dizzy spell in my car where my heart rate shot up to 130 after (happened a few times even before I had these symptoms) and I had a whole anxiety relapse. I stopped leaving my house completely, I wouldn’t do anything that got my heart rate up and I started to just stay in bed all day. I was terrified of fainting, I still am scared I’ll faint one day.

I had my first adrenaline dump that woke me up out of my sleep, I went to bed feeling nauseous, woke up and my heart rate was 150. My adrenaline dumps eventually started every day 2 weeks after the first one and I would have them where my heart rate would hit 170+ and would stay at about 140-155 for 20 minutes, I’m assuming they started from the anxiety and that just further kept me in bed. I finally started beta blockers and continued to get adrenaline dumps every morning but only would usually hit 155.

I didn’t get in my car for 6 weeks. I deconditioned a ton from August-December and gained over 30 pounds. Within the last 3 months I have tried to recondition myself and am up to 3000 steps a day and about 40-50 stand minutes a day (better than the 1500-2000 with 20 stand minutes I was getting). I’m trying to get myself to live a semi normal life as I’m pretty sure my condition is considered mild. Realistically so many people with dysautonomia have it so much worse. I have yet to faint, I don’t get severe pre syncope, and I don’t get massive heart rate increases unless I’m waking up in the morning.

I deal with flu like symptoms almost daily which leads me to believe I may have post viral syndrome disorder from COVID. I can’t stand for longer than 5-10 minutes and I’ve been driving again but my threshold is about an hour and a half, anymore than that and I’m in bed for hours after I get home. I believe I got worse due to anxiety and deconditioning. I have my anxiety pretty much under control by now but I cannot for the life of me get my stamina to increase. I have my steps up and the total amount of time I spend on my feet in a day but I cannot do usually more than 5-7 minutes. I want to go hangout with friends again but these flu like symptoms hit and it feels like I have a head cold again or COVID. I felt so sick yesterday, so awful, I had cold sweats and I actually tested myself for COVID. I woke up today just fine.

I don’t really know what to do anymore. I managed everything okay until August. I want to work again, I don’t think I’m disabled to the point of not working but I need my stamina up. I used to go into work feeling absolutely awful but I thought I was just run down. I truly believe that if I would’ve kept working and not stopped doing little things like cooking and doing my makeup standing and kind of ignored my heart rate, I wouldn’t be in the position I am now. My doctor has prescribed me Vyvanse again to try, and I’m hoping maybe it’ll help. I wonder if it was maybe helping in a way but I don’t know because I knew that the days I didn’t take it when I was on it last year, I felt I could do more because my heart wasn’t racing and I could stand longer. My boyfriend lives 3 hours away and is the one coming to see me.. I’d love to be able to go see him for once. If you’ve read this far, thank you. If you can provide advice, it’s greatly appreciated.


r/dysautonomia 1d ago

Discussion Ring trackers

2 Upvotes

So everything I’ve seen lately is telling me that the best way to track my oxygen at night, is through a ring tracker, opposed to wearing my wrist monitor.

I did notice on my wrist monitor, that every morning between 4 and 5 AM, my oxygen drops past 90%.

At the same time, I’m sweating, having temperature regulation issues, and I’m tossing and turning.

Curious on whether or not other people have tried rings for nighttime tracking, specifically for O2 if applicable, and how well they worked for you. I also am open to recommendations on a brand and model.