Sarasw

Thank you. It sounds similar to what I have but I need to find a doctor who understands POTS.

I get chest pressure and shortness of breath if standing too long. It does feel like a panic attack so I was thinking that being upright too long causes adrenaline release? It's difficult not to react to the feeling and prolong the 'panic' part of it. Although sometimes it goes away if I'm sitting or lying down. I had a shower today so that probably means I should have even more water (Had 8 cups by 3:00 pm). Any tricks to decrease the chance of this happening? I can't have tons of salt because it may be raising my blood pressure too much. I am trying to do breathing exercises to calm my nervous system.

Thank you! I guess pacing is important the way it is with chronic fatigue syndrome.

I have CFS and POTS/orthostatic intolerance and get so much worse symptoms (dizziness, chest pressure, etc.) when dealing with colds, etc. or shortly after. Does anyone know if this is due to inflammation, autoantibodies or something similar? I don't think that I have MCAS but you never know. And does non-strenuous exercise make this worse (ie. walking on flat surfaces)?

Agree DysautonmiaMatt. There are too many unknowns and this is not like regular vaccines with long term data behind them but involves mRNA getting cells to produce spike proteins which contrary to what the media says, don't stay in the deltoid muscle and can cause myocarditis. And even boosted people are getting omicron anyway. I had covid in January 2020 and it wasn't a big deal (with pre-existing CFS and orthostatic intolerance/dysautonomia). I had omicron (which is quite different) recently and it was a bit long lasting because I was run down and not getting enough sleep. So a little bit worse but getting better.

I thought that sodium wasn't good for hyperadrenergic POTS but I feel better if I have miso soup or add a bit of salt to water. Doctors have told me not to add extra salt but I think they tell everyone that to avoid hypertension. I am working on trying to get more potassium in food, it seems like I am not eating enough even though I eat fruit and vegetables. Do those of you with hyper POTS eat extra salt? Someone here with hyper POTS has improved with IV fluids so maybe salt does help. (Water currently goes right through me and I have low renin.) My POTS is worse in this hot weather.

Thank you @Pistol! I will show this to the internist. I think part of this may be from CFS too.

Thank you Yogini. Doctors aren't much help anyway, they said stick to eight cups a day! It's the hot weather that is throwing me off.

Showers seem to make me feel weaker and more susceptible to crashing. I get adrenaline from being too hot or cold. I found the book, Hope and Help for Your Nerves by Dr. Claire Weekes really helpful to help me not to react to the adrenaline to help reduce its affect. If I can't sleep due to adrenaline I try to think of something neutral like a movie or a dream to help reduce the charge I would get from thinking about something real or worrisome. It does really seem to help. Hope you feel better soon.

@bombsh3ll thank you for your reply. Yes, I think you are right. My aldosterone is about 395, my renin is 2.6 or 2.7 I think and my aldosterone/renin ratio is 146 so my aldosterone is not high but my renin is low. The lab test said primary aldosteronism is likely. I don't have high blood pressure and my kidney tests were all fine thank goodness. I had an ultrasound today. Fingers crossed no tumour. I wonder if POTS or high adrenaline can cause low renin? I haven't seen an endocrinologist yet. The electrolytes are still confusing but I am having more potassium foods. I feel like knowing about the aldosteronism thing has caused a nocebo effect with worse POTS symptoms!

Thank you @Pistol. I will ask the cardiologist when I eventually get an appointment. My sodium was high normal yesterday but I feel that I need a little extra salt and extra potassium from food. I do wonder how many electrolytes that I am losing drinking 12 cups of water a day. Glad your symptoms have improved. ☺️

Thank you @yogini . Do you think we adapt if we increase water consumption slowly over several days? I am limitimg it to 12 cups a day for now. I'm not sure if sodium consumption depletes potassium but I will try having only a little extra sodium and plenty of fruit and vegetables. I don't know if the headaches are from POTS, adrenaline or sodium or potassium depletion.

Thank you @Shepard1. My blood test for potassium was normal but I will ask the doctor about it. I have no palpitations or muscle cramps and recent ECG fine and I do eat lots of vegetables. My head is mostly better. Thank you for your concern, I will check tomorrow with the doctor. They don't seem to have a clue about how much to drink, etc. I asked for the aldosterone and renin tests, no doctor thought to send me for that test. Good thing I asked I guess! I don't have high blood pressure though which is good.

Could you have a histamine intolerance issue with alcohol? Or an allergy to sulphites? Does it happen with all forms of alcohol? You might want to discuss this with your doctor.

I have hyper POTS symptoms and CFS and just found out I have mild hyperaldosteronism which I am getting further tests for. My symptoms usually include nausea but have I become more thirsty (not diabetic), not nauseous anymore, drinking more water and getting vice-like headaches and weakness. I was told by doc not to increase salt but I think he doesn't understand POTS. I wonder if I have low sodium but my blood test said it was 141 so not low at time of test. I drank 15 cups of water one day and got headaches the next. Today more headaches but drank less water (lost count). And hot flashes and adrenaline surges. I don't know why I am getting headaches but keep thinking of low sodium. I started adding salt to water but it hasn't helped much yet.