The Invisible Illness: Dysautonomia/NCS/POTS
Hi, I’m Grayson and for the longest time I had so many problems with my body. Everyone always told me I was just crazy and it was all in my head.
Out of nowhere I:
1) Would shake almost like I had Parkinson’s Disease
2) Can’t do high temps outside (which I hate because I love Summer)
3) Couldn’t do hot showers or baths
4) Would have heart attack like chest pains
5) My whole body would go numb and tingle
6)Stay dizzy all the time
7) Always nauseous
8) Migraines almost every week
9) A lot of brain fog
And so much more.
I have been diagnosed with Dysautonomia, Postural orthostatic tachycardia syndrome (POTS), and Neurocardiogenic syncope (NCS). I decided to come post on my Lemon8 to help people that have the same problems as I do with my body.
Let’s talk about the definitions of what I have been diagnosed with.
POTS… Postural orthostatic tachycardia syndrome (POTS) is a blood circulation disorder that causes an abnormal increase in heart rate when standing up or sitting up.
NCS… Neurocardiogenic syncope (NCS), also known as vasovagal syncope or reflex syncope, is a fainting disorder that occurs when the body overreacts to certain triggers, causing a sudden drop in blood pressure and heart rate.
Dysautonomia… Dysautonomia is a nervous system disorder that affects the autonomic nervous system (ANS), which controls automatic body processes like heart rate, blood pressure, and breathing. Dysautonomia can affect all or part of the ANS, and can cause serious problems.
What can/can’t I eat or drink with dysautonomia?
Your healthcare provider will likely recommend certain changes to what you eat and drink if you have dysautonomia. The recommendations often include (but aren’t limited to):
Avoid alcohol.
Stay hydrated.
Add salt as recommended.
Make sleep and rest a priority.
Manage your stress levels.
Reach and maintain a weight that’s healthy for you.
Take breaks as necessary.
Avoid heat (use warm water instead of hot for bathing).
Move around to avoid sitting or standing for too long.
Monitor and manage your caffeine intake (as your healthcare provider recommends).
Take medications as prescribed and talk to your provider before adding new over-the-counter supplements.
Remember that even though you can’t see Dysautonomia doesn’t mean it’s not real.
Dysautonomia refers to a range of conditions caused by dysfunction of the autonomic nervous system (ANS), which controls involuntary bodily functions. Common symptoms include palpitations, dizziness, fainting, and gastrointestinal issues. POTS is a specific form of dysautonomia characterized by an excessive heart rate increase upon standing. Individuals may experience debilitating fatigue and cognitive impairments known as 'brain fog.' Managing dysautonomia often involves lifestyle adjustments such as increased salt intake, adequate hydration, and tailored physical activity. Patients may need to avoid triggers that exacerbate symptoms, including extreme temperatures and stress. Collaborating with healthcare providers for personalized dietary and medication strategies is crucial for effectively managing these conditions. Public awareness and understanding of these disorders are essential, as these invisible illnesses can significantly impact daily life. Resources such as support groups and educational platforms can provide comfort and information for those affected. Empowering oneself with knowledge about dysautonomia can help reduce stigma and encourage others to seek help.
I have Dystonia since 2014