Autonomic Dysfunction

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Autonomic Dysfunction
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    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. 😄

    3 people are talking about this
    Community Voices

    A diagnosis...

    <p>A diagnosis...</p>
    6 people are talking about this
    Community Voices

    Twice in the last month, I lost the ability to walk for an entire day because my whole body would start shaking so hard that I couldn’t maintain balance, even with a walker. One time it was after a short amount of exercise which I hadn’t done in a long time and I almost fainted when I stood up and then I lost function. The second time, I had a hemiplegic migraine and took medication for it that I’ve used for a few years and never had any issues with and I had the same shaking standing and attempting to walk was a problem. I regained a little bit of function by bedtime but not much. The next morning, I was ok again. Is this a symptom of POTS? I have been diagnosed with it. Has anyone had this type of experience? #POTS #AutoimmuneAutonomicGanglionopathy #AutoimmuneAutonomicNeuropathy #MyastheniaGravis #ChronicIllness #Dysautonomia #AutonomicDysfunction

    7 people are talking about this
    Community Voices