POTS

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    Community Voices

    Mantra

    <p>Mantra</p>
    16 people are talking about this
    Community Voices

    Reflection

    <p>Reflection</p>
    24 people are talking about this
    Amanda Van Eps

    Patient Management and Consent in a Post-Roe Era

    I was diagnosed with a brain tumor in 2020 as an incidental finding after a routine MRI for migraines during the height of the pandemic. This was not my first diagnosis with a chronic or invisible illness, but proved to be an annoying diagnosis. I say this because it came with more questions than answers. Until you have the tumor removed or biopsied, there is no way to be 100% sure exactly what it is beyond the educated guesses of your amazing medical team. In what I thought would be unrelated, I had an IUD eject itself a month or so prior to finding the tumor, so I was in the market for a new form of protection and menstrual control. Because I also have POTS, birth control has been extremely helpful in controlling some related blood pressure and migraine symptoms. While updating my OBGYN provider to get a new IUD, I was refused until I received clearance from my neurologist. The reasoning was that the hormones from birth control may or may not worsen the status of the tumor. Now while I agree it is the provider’s job to inform the patient, the patient’s consent is the only consent that matters. As if I didn’t understand the repercussions when the duality of the hormones from an unwanted pregnancy wouldn’t be just as precarious, but obviously more so. My medical history is complex and nuanced and that IUD helps manage other conditions I must deal with on a daily basis. I did not have the luxury of just managing the tumor and leaving other conditions and their symptoms to be reactive. I wrote my neurologist a light, but snarky email about how I’d rather be afflicted by the hormones of birth control than those of an unwanted pregnancy. His office faxed a letter to my OBGYN to clear me for my IUD, but the fact I had to ask him for birth control sits oddly to this day. I share my story because we are now in a post-Roe climate where patient autonomy, needs, and consent are often secondary to blanketed thought. Thirty-eight percent of American women face one or more chronic illnesses. The symptomatic nuance chronic illness places on childbearing years will never see the inside of a courtroom because justices are not qualified physicians. These blanket bans by the states will never know how to regulate exceptions, acknowledge women as whole patients, or address their patient outcomes. Now that the Supreme Court has asserted that all uterus-bearing patients no longer have the right to privacy, there is no longer a threshold or standard for patient care independent of a state’s belief systems. Risk assessments are no longer the choice of just the patient, depending on your location. Where does this leave an already complicated relationship between physicians, their patients, and the conditions they’ve vowed to treat?

    Community Voices

    Fear that I'm not really ok...

    I was diagnosed with #POTS 2 1/2 years ago, and have been living with symptoms for at least 7 years. For the first 2 yrs after my diagnosis, I was stuck with a doctor who clearly wasn't putting in much effort to help me, so I saw no improvement at all. I now have a great doctor that I love, and his treatment plan was so encouraging, but I'm currently pretty #discouraged because since January I have had covid and walking pneumonia, therefore I've had a big setback. I'm so tired of feeling bad ALL the time. I have 2 young kids, and I feel like my lack of ability to participate in things with them is wrecking their childhood. I also have always been a big worrier, so even if I've dealt with certain symptoms before, if they are really acting up, I get afraid that the doctors missed something, and I'm gonna die. I just need a community that understands and that can reassure me that my symptoms are normal to my condition. #mentallyexhausted #sotired
    #heartflutterssuck

    Community Voices

    Relax

    <p>Relax</p>
    19 people are talking about this
    Community Voices

    Filter your thoughts

    <p>Filter your thoughts</p>
    25 people are talking about this
    Community Voices

    Peace

    <p>Peace</p>
    15 people are talking about this
    Community Voices

    Comobilities

    After getting diagnosed with POTS last year, I thought that was going to be the end of the mystery of why I feel so sick. But, just as life happens to unfold, this was indeed not the end.

    Once I started treatment, things got a bit better. I could work again and I was only fainting a few times a week, if that.

    However, recently, things have gotten worst than ever. I'm back to fainting multiple times a day, except this time it has left me almost completely bed bound. I lost my job, my hobbies, my ability to even shower without someone close by.

    It's been hard.

    But even worst is I am having bad abdominal pain, constipation, vomiting episodes, and more GI tract symptoms which I've never had before.

    I heard that POTS has many comobilities, and I fear that this might be one developing.

    I am trying to hold out and change my lifestyle but as the days get worst I fear I may have to go seek urgent help.

    What is everyone else's experience with POTS' comobilities, if any? And how long did they take to manifest?#POTS

    2 people are talking about this
    Community Voices

    Being alone

    <p>Being alone</p>
    60 people are talking about this
    Community Voices

    Smile

    <p>Smile</p>
    59 people are talking about this