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    The reality of living with POTS

    The reality of living with POTS.

    What is it? Postural Orthostatic Tachycardia Syndrome.

    It causes tachycardia and orthostatic hypotension. 30% of people with POTS experience syncope (fainting).

    I experience fainting episodes up to 100 - 150 times per day.

    Why? I have Ehlers Danlos Syndrome. It's a rare degenerative condition.

    What does this mean? It’s a connective tissue disorder due to a faulty gene which impacts collagen production.

    Think of collagen as glue for the body. Our body is held together by it.

    EDS impacts your joints, muscles, organs and bodily functions. It causes weakness, dislocations and instability.

    Unfortunately, the blood vessels in my legs are too loose to send blood back to my heart. My blood pressure drops, tachycardia starts and my heart signals panic to the brain. This causes fainting.

    I also have Dysautonomia. It is essentially the dysfunction of the autonomic nervous system. It’s usually caused by damage to the vagus nerve.

    The autonomic nervous system regulates bodily functions. It controls heart rate, blood pressure and respiration. The parasympathetic and sympathetic nervous system are responsible for processes such as rest, digestion, fight or flight responses.

    If you have Dysautonomia and POTS, your nervous system cannot regulate these processes anymore.

    Here are some symptoms:

    * Near syncope

    * Migraines/headaches

    * Gastrointestinal issues

    * Nausea

    * Insomnia

    * Joint/muscle pain

    * Muscle weakness

    * Anxiety

    * Tremulousness

    * Menstrual irregularities

    * Frequent urination

    * Cognitive impairment

    * Visual blurring or tunnelling

    * Chest pain

    * Inability to regulate temperature

    * Heart palpitations

    * Shortness of breath

    * Excessive fatigue (Chronic Fatigue Syndrome)

    * Exercise intolerance

    * Severe dizziness

    * Severe thirst and dehydration

    * Adrenaline surges

    It cannot be cured. A few organisations are researching these conditions to help find treatments to manage symptoms. Sadly, for patients, it is not well known medically.

    The community isn’t aware of how to support people living with these debilitating conditions.

    We often need mobility aids, cooling aids, IV infusions, compression stockings and garments, medication, oral hydration solutions, and access to chairs or seats.

    This condition is debilitating, and it can feel impossible to navigate. We need support from our family, friends and community. We also deserve the correct support from medical facilities, and to have access to disability services and funds to be able to live through it.

    Awareness matters.

    #EDS #EhlersDanlosSyndrome #POTS #AccessMatters #disabilityawareness #BabeWithAMobilityAid #HospitalLife #AmbulantWheelchairUsersExist


    Hospital Life, Anyone else doing time for your condions?

    I am currently in the Hospital. Very lonely and bored! Anyone else? Looking for connections with people with similar conditions. Hospital or not.

    #Gastroparesis #EhlersDanlosSyndrome #Dysautonomia #TPN #Gtube #HospitalLife #TransverseMyelitis

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    Functional Neurological Disorder #FunctionalNeurologicalDisorder

    Not having a good day today. Both my legs are in pain & I have no energy to do anything. Feel like such a burden on Anthony & the kids. Tomorrow it will be a month since the journey started. When will it end or is this my new normal? #fndwarrior #HospitalLife #fndhope #fndaware

    1 comment

    Hospital Admission Update

    #CysticFibrosis #HospitalLife #Anxiety
    Regarding my last post, I had said that they found out my problem had been an allergy to aspergillosis. they made a mistake (as everyone does) and so I had a CT Scan today. the CT scan showed that it is actually my mycobacterium that is causing my problems. next step is to do a year long iv antibiotic run which has an extremely low success rate. not the news I was hoping for but I can deal with it like I have everything.