Autonomic Dysfunction

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Autonomic Dysfunction
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    Community Voices

    Excessive sweating associated with POTS?


    I have POTS and lately I have been going through excessive sweating and getting really warm, mostly after eating or drinking, but it could be something as simple as drinking water. At the very least, it's gross and inconvenient, at it's worst, it's pretty hard to function, and I feel very sick. Is this POTS related, or is my body deciding to grace me with yet another issue to deal with? #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction

    6 people are talking about this
    Community Voices

    Desperately Wanting IV Fluid

    Has anyone been able to get an IV from an Urgent Care etc? I’ve been so badly dehydrated and I can’t keep much down. I got food poisoning a few weeks ago and it completely F*&%#? up my stomach. I’ve been drinking water every ten minutes but I haven’t been able to keep down my electrolyte drinks, only my vitassium pills and extra salt on the mashed potatoes I can eat.
    But because of the horrible experiences I’ve had with ERs, Urgent Cares, and Drs I have trouble believing anyone will believe me and help. Especially since I don’t think my doctor ever put POTs as an official diagnosis on my chart.
    And on top of that I’m hypoglycemic (non-diabetic) but haven’t been diagnosed. So I’m dealing with both but can’t seem to get help. And getting my family to want to take me to the dr has been… awful. They are treating me like it’s nothing. Just my Lyme disease acting up. And our insurance ran out yesterday and doesn’t start again until the 12th.
    I’m so done. So sick of this. The only ones that seem to care are the dog and cat. (And I’m sure some of you all on here too. Hence this post…)

    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #ChronicIllness

    8 people are talking about this
    Community Voices

    Compression socks 💜

    <p>Compression socks 💜</p>
    4 people are talking about this
    Community Voices

    Anyone have tips on the best mobility aids for dysautonomia? Also has anyone tried aqua therapy? #Dysautonomia #AutonomicDysfunction

    6 people are talking about this
    Community Voices

    Is mild POTS a thing?

    At this point, I am sure that I have some form of disautonomia. It is the only thing that explains the random dizzy spells. Convincing the medical professionals has been unfortunately difficult. A nurse practitioner that knows me well agrees with me and referred me for a tilt table test. Six months later I am still trying to get the test done. That is just one example of the long, drawn out process trying to find answers has been. Truth is that I am back to working full time; I told a medical leave of absence last year due to chronic fatigue. I read other people's stories about not being able to stand to shower or wait in a grocery line. My life is not what is once was even though I can still do those things. That's why I find myself curious about what a mild form of POTS might look like. #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

    2 people are talking about this
    Community Voices

    POTs symptom advice for someone undiagnosed? #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction

    Hi everyone,

    This my first post here. For about a year now I have developed symptoms including tachycardia, dizziness, fatigue and a bunch of other weird symptoms. It has finally gotten to the point where I have felt like I was going to pass out at work, or have fallen asleep at my desk. I am in grad school part time as well as working a full time job. With this extra stress I feel my symptoms have gotten more pronounced. I did some research and so did my mom, and we came across POTS. I have been keeping track of my symptoms and such and I have done the at home table test. My highest heart rate has been 164bpm, SITTING DOWN. With the test and the symptoms I went to my doctor to find out wtf is going on. Luckily she believed me and wonders if POTs is what is happening. I am getting an appointment with neurology and cardiology. Cardiology appointment was scheduled for October 19th, but moved to the 26th. Neurology has not called me. I asked what I can do in the meantime to help reduce my symptoms or feel better. My doctor (just my general practitioner) said to document or go to urgent care. What else can I do!? Its getting to the point where I am afraid I will miss work or not do my school work because I am either, way too dizzy, mt heartrate is through the roof, or I feel like I will pass out if I stand up.

    Obviously I am aware I am undiagnosed and this could definitely not be POTS. But at this point I am willing to try anything to lesson the symptoms. So assuming that is what it is;

    What can I do while I wait for my cardiology appointment?

    7 people are talking about this
    Community Voices

    I'm a Warrior

    <p>I'm a Warrior</p>
    5 people are talking about this
    Community Voices

    I need a pat on the back…

    I’m type 2 diabetic - I was diagnosed in 2019, on my birthday. The nurse that I spoke to gave me the impression that I could CURE it. That one day, if I worked hard enough, I wouldn’t be diabetic anymore. I wouldn’t have to constantly watch what I’m eating and drinking like a hawk. I kept thinking that for about a year, until a different nurse told me the cold, hard truth. I will always be diabetic, and I will always be fighting to keep control over my sucky pancreas. (Yes - I’m bitter about it).

    For 2020, I managed to get my diabetes in remission and I was so fricking happy.

    But, I had a reeeally rough time last year (2021). I was completely unable to exercise for months on end and I hated it. My HBA1C started steadily climbing upwards despite cutting down carbs and avoiding sweet stuff. Then, at the beginning of THIS year, I started going for 45-60minute SLOW walks with my sister and baby nephew once a week. My numbers began going down. I’m not in remission yet, but I plan to be.

    And recently, I’ve been struggling a fair bit with my mental health and the urge to binge eat has been seriously strong. I really really want a slice of chocolate fudge cake from my favourite bakery. But my problem is that I can never stick to having just the one.

    So, at the beginning of this week I decided to buy a packet of my favourite biscuits - Hobnobs! It’s just an oaty biscuit, but I love them. Each biscuit is 3g of sugar, so I’ve been allowing myself two or three a day. I haven’t pigged out, I’ve been sticking with it and I’m really proud of my restraint.

    I could really do with a pat on the back right now. This is such hard work. No one told me it would be this hard.

    #chronicillnesswarrior #ChronicPain #Diabetes #Type2Diabetes #POTS #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #InterstitialCystitis #Migraines #BPD #BorderlinePersonalityDisorder #Depression #Anxiety #BingeEating #Food

    20 people are talking about this
    Community Voices

    Quick update

    Hi guys!

    Just wanted to hop on here and give you all a quick update about what I've been dealing with.

    I posted a bit ago about combilities, and it turns out I have a few. Just found out that little things my whole life growing up was actually hyper mobile eds, and that could be the reason I developed POTS in the first place.

    I am changing medications, and its not going well but I am hopeful for the best. Maybe with a bit more time I will adjust.

    I ended up starting a blog to try and reach others who struggle with disabilities, specifically for those who travel or who want to get out of the house in an accessible way.

    I am staying hopeful that the future will be fruitful for not just me but for all of us. #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #ChronicIllnessEDS

    3 people are talking about this
    Community Voices

    Hi! I’m new to POTS. What kind of salty snacks and things do you guys eat/use?
    I’ve discovered LMNT and Liquid IV and Vitassium and watermelon which have all helped a ton! But I’d love to hear some ideas of what everyone else does. 😄

    4 people are talking about this