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autonomic dysfunction
If I was previously diagnosed with POTS and orthostatic intolerance (based on the active stand test), which is now mostly under control with meds, but I still have the symptoms of POTS and OI (such as lightheadedness, dizziness, nausea, fatigue, headaches, exercise intolerance, difficulty with concentration, coldness in extremities, etc.), where does that leave me diagnostically?
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Hello @mama.aloha, You mentioned that the POTS and orthostatic intolerance is mostly under control with the meds but you still are having some of the symptoms. I think it's important to discuss your questions and concerns with your doctor if you haven't already done that. Here's some additional information I found on the Standing Up to POTS website that might be helpful:
-- Managing POTS Symptoms: https://www.standinguptopots.org/livingwithpots/pots-tricks
Have you discussed the ongoing symptoms with your doctor to see if they have any suggestions?
@mamaaloha
Have you seen a neurologist, cardiologist, pulmonologist and rheumatologist? Other than medication, what else was suggested?
My son has POTS symptoms ever since he had Covid infection two times. He also has a heart valve defect and Raynaud’s syndrome. He gets lightheaded/dizzy, coldness in hands/feet, heart palpitations/pounding, etc. His cardiologist suggested increasing drinking water and adding electrolytes (like LMNT brand), getting up slowly from seated positions, reducing screen time/video games, increasing exercise gradually, include salt/increase salt in his diet, etc. This has helped plus he gets counseling to help him with breathing techniques to calm him and deal with panic attacks when he gets symptoms at school.
I also have to use electrolytes all day (use the Key Nutrients brand) as I easily get dehydrated. Low Dose Naltrexone is helping regulate my electrolytes so I need less electrolyte supplementation now but it took about three month to ramp up on the dose. It was well worth it as I do not have to push fluids all day any longer.