➰ Dysautonomia | Diagnosis Discussion ⚕🗣

By Adem Lewis / in , , , , , , , , , , , , , , , , , /

(upbeat, optimistic music) – Hi y’all. I’m Jaquie from Chronically Jaquie, and this is another video in
my Diagnosis Discussion Series. Due to my genetic mutations, I have several chronic
illnesses and in this video, I’m going to further discuss
my dysautonomia diagnosis. But, before we continue,
please keep in mind that everyone’s chronic illness journey is individual to themselves and these are my personal experiences which may differ from
yours, or someone you know. Also, be sure to check out the description for the other videos in my
Diagnosis Discussion Series and helpful links. So, I have dysautonomia, which means autonomic nervous system dysfunction. Your autonomic nervous system, or ANS, is responsible for things
we don’t even think about, like breathing, heart rate, blood pressure, blood flow. So, all of those bodily
functions we don’t think about, don’t work all that great for me. My specific form of
dysautonomia is called POTS or postural orthostatic
tachycardia syndrome, which basically means my ANS cannot regulate blood flow correctly. My Ehlers-Danlos syndrome
actually plays into my dysautonomia and, if you haven’t already, I do recommend watching the EDS video in my Diagnosis Discussion Series. But anyways, the lack
of collagen from my EDS affects my blood vessels by making them loose and stretchy. The autonomic nervous system is meant to contract blood vessels
at appropriate times to help with circulation. But this is very difficult to do with loose and stretchy vessels, further contributing to the problem. What ends up happening is blood pooling in my lower extremities. And since the blood is pooling, rather than circulating appropriately, the ANS tries to compensate
by making my heart beat very, very fast to get the blood moving. Unfortunately, it does
not work out very well and that is also the
tachycardia aspect in POTS. It’s obviously more
difficult to circulate blood when we are standing
because the ANS has to work against gravity and although
I can be symptomatic while laying or sitting,
standing is way worse. The longer I am upright, the
more symptomatic I become and I can’t walk very far without experiencing syncope, or fainting. That is just one symptom
of my dysautonomia and others include, but are
definitely not limited to, tachycardia, palpitations, chest pain, shortness of breath, blood
pressure fluctuations, dizziness, weakness, blood pooling, which can be painful, and fatigue. Fatigue is a big part of my POTS because my body has to work so much harder just to stay upright and
do simple activities. Studies have even show that the average POTS patient
is expending energy as if we are constantly running in place. POTS also makes exercise very difficult because my already over-expended
body is low on energy. But, not only that. While exercising, my autonomic
nervous system and heart, have to work even harder to regulate those bodily functions it
just can’t regulate very well. So, in order to stay active and healthy, I have to do safe,
mostly supine, exercises that work for me and my body. Heat and cold intolerance
is another aspect of dysautonomia because the
autonomic nervous system is responsible for temperature regulation. Heat is a very big issue for me because when your body becomes hot, it naturally dilates or
expands your blood vessels, so my already faulty vessels become even looser and stretchier. Heat is actually a very
big trigger for my syncope. But cold can present issues as well as I find it difficult to stay warm, but, for me, personally, I do better in the cold than the heat. Although dysautonomia is gaining awareness in the medical community, back when I started having symptoms it wasn’t very widely known. I developed my POTS at 15 years old, and, among other symptoms, I
was fainting very frequently, but it wasn’t until five years later that I finally received
a proper diagnosis. At 20 years old, an autonomic specialist, ordered a tilt table test. How this test is performed can vary a bit from patient to patient, but for me personally, it was
non-invasive and non-painful, but it can bring out some
pretty uncomfortable symptoms. During my test, I almost passed out. What they do is, lay you flat on a table and then bring you upright while measuring heart
rate and blood pressure. And a significant increase in heart rate, as well as other symptoms
I had during the test is what led to my dysautonomia
and POTS diagnoses. Because POTS can vary
from warrior to warrior, treatment plans will differ as well. My main approaches are
POTS-safe exercises, medications and intravenous fluids. The IV fluids do help me the most because an additional complication I face due to my dysautonomia is hypovolemia, or low blood volume, and the IV fluids help to
expand my blood volume. I also use mobility devices when needed. If my dizziness, fatigue or syncope is making it too difficult
or unsafe for me to walk, I’ll use a walker,
specifically one with a seat so I can take a break when needed, or a wheelchair, more
so for longer distances. I see these things as tools to help me live my best possible life and stay safe, while also
remaining independent. And you can learn more
about all of my treatments by following the links in the description. Dysautonomia can be so tricky because the autonomic nervous system is incredibly complicated and it’s involved in so
many functions of our body. But, I tackle it the best I can, and keep moving forward. I hope this video on my
dysautonomia was helpful, and thank you so much for joining in on my Diagnosis Discussion Series. (upbeat, optimistic music)

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