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    Community Voices

    Anyone with hyperandregenic POTS? Curious about solutions/coping mechanisms for adrenaline surges, medications, or comorbidities

    Hi there. I was diagnosed with POTS in 2020, and through a lot of self research discovered that I suffer from hypoandrogenic POTS. My symptoms present as visual snow, tinnitus, and heart rate inconsistency daily, and with extreme adrenaline surges at night (still trying to pinpoint my triggers). I’m curious if anyone here has this too, and if so if you have any solutions for flare ups? Specifically the adrenaline surges at night, but also generally.

    Also, has anyone had success in getting a medical assistance dog? I’m really interested in doing so with a rescue, but know it’s hard to find.

    #Dysautonomia #POTS #hyperPOTS #copingmechanisms

    6 people are talking about this
    Community Voices
    Community Voices

    Nationwide Insurance Formulary Changes

    In January 2020 Insurance formulary changes by every state in the Union occurred for every patient, regardless of whether or not they were private insurance or Medicare Medicaid.

    This has caused many problems for many insured particularly those with chronic illnesses that they are trying to manage themselves with their own home care. It is impacting Pharmacy decisions for medication denying people critical medication that they need and have been on for years and have already gone through a prior authorization process. If you are having problems getting a prescription you need to contact your insurance provider and request a prior authorization for the physician who is prescribing the medications you are having difficulty with. Decisions are being made and not by medically informed people to your conditions, that are limiting both the doctors and the pharmacist and what can be prescribed, filled, ordered as far as durable medical equipment, and even physical therapy.

    Further cuts and changes are also being made in the 2020 budget. Please stay on top of your medications and needs. I hope this assists in chronically ill patients here to advocate for themselves.

    Good luck and better health to all.

    #EhlersDanlosSyndrome #Spoonie #Dysautonomia #hyperPOTS #CRPS #CFSME #CPTSD #Diabetes #Fibromyalgia #autoimmune #zebrastrong

    4 people are talking about this
    Community Voices

    What can I do to prevent myself from selfharm? #Depression

    I don’t want to hurt myself, but it feels like that’s the only thing that can “help” me feel better. I am in chronic pain with #HypermobileTypeEDS and #hyperPOTS. Along with that, I am experiencing chronic farigue. I don’t get restful sleep at night because of my night terrors and to top it all off, I have #PTSD. I’m hyper sensitive to my surroundings and the littilist thing could trigger an episode of pain that has sent me to the ER multiple times. I feel like a burdan to my loving family and friends and I’m trying my best to stay positive but my world is crashing down and my depression feels like an anchor tied around my foot and I’m doing the best I can to keep my head above the surface. I hate that I feel the need to hurt myself and I want these thoughts to go away! Does anyone have any tricks they are willing to share that helps distract them from harming themselves?

    10 people are talking about this
    Community Voices
    Community Voices

    Anyone else with hyperpots often have invisible facial flushing?

    What I mean by that is just that your face will feel MUCH warmer than the rest of your body combined, but there’s just no actual visible redness of the face. I experience this a lot, and would love to hear any tips you guys might have on how to deal. Also, idk if this happens to anyone else, but when my face gets to that point of hotness I get crazy irritable. #AutonomicDysfunction #Dysautonomia #hyperPOTS

    3 people are talking about this
    Community Voices
    Community Voices

    low budget Shower stool suggestions anyone? #Dysautonomia #hyperPOTS #PosturalOrthostaticTachycardiaSyndrome

    looking for something sturdy, low budget, preferably something I can potentially travel with as well? idk. just looking for ideas.
    Al has anyone had there insurance cover it for them?

    2 people are talking about this