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yogini

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  1. You may want to discuss with your doctor the time of day you take the beta blocker. For example if you take in am, maybe take it at night (your HR will be lower) or if you take at night maybe it's lowering your BP too much - switch to day.
  2. It varies depending on so many things. Some nights I sleep 4 hours, other nights 10. It is also not unusual for me to wake up in the middle of the night.
  3. Caffeine is a stimulant which increase the heartrate, That is also one of the reasons why some us have trouble tolerating it. It definitely increases my HR but I feel much more alert, awake and I suspect it helps keep up my BP so it's worth it for me.
  4. Hi I would try doing some different experiments. For example if you were drinking tap water, try bottled water. Maybe there is something in your water that you are allergic to. A doctor can confirm but I think it is unlikely that drinking water alone would cause headaches. If you took in too much salt and your blood pressure becomes too high, that definitely causes headaches. The way to manage this is to buy a home BP monitor and very gradually increase your intake of salt and or water. For each day measure your HR and BP a few times and also write down how much salt and water you have.
  5. Perhaps a doctor could work with you to figure out why your heart rate is so high. 90-120 lying down seems quite high. I have had this very rarely but can’t imagine every day..If you are diagnosed with dysautonomia I am not sure adrenaline is the cause of it. For example if your blood pressure is low your heart might be beating faster to try and maintain it. I suspect you will sleep much better when that is sorted out.
  6. I got my first vaccine dose almost 2 weeks ago (Moderna). I definitely didn't feel well for a full 24 hours after getting the shot. I got a weird taste in my mouth immediately and then a few hours after, I started to feel strange. No fever or tachycardia, but I didn't sleep all night. I was lethargic, had a mild headache and sore back/neck and complete brain fog. It really felt like it triggered an episode of POTS minus the fast heart rate, if that makes sense. It wasn't unbearable, but I was completely out of it. Then suddenly all the symptoms went away. So overall, it wasn't that bad.
  7. Decaf has trace amounts of caffeine. Caffeine increases blood pressure and HR. I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia. Some people need it and can't function without it. Others can't tolerate it. I've always heard that those who can't tolerate expereinced an increased HR. I never heard the cerebral blood flow discussion before. Salt only works to increase your BP if you chase it with water. If you are not taking the recommended amount of water with your salt, you will be less likely to see the benefits of the salt.
  8. If you get a regular heart work up your doctor should be able to tell you whether you are at risk for a heart attack, and the criteria you should use to go to the hospital Although dysautonomia can feel scary it isn't typically connected to a heart attack. For most of us, our doctors have advised us that we don't need to go to the ER unless we faint, etc.
  9. I am not sure that positional tachycardia is necssarily limited sinus tachycardia. If you are under the care of a good doctor that treats a lot of dysautonomia, then you are probably already getting the best advice!
  10. It may not make sense to try to remain standing when you experience this. Dysautonomia involves sinus tachycardia. Hopefully your doctor is in the loop and has ruled out other forms of tachycardia like SVT.
  11. Hi, I think it might make sense to mention this to your doctor. Others on this forum might have had this symptom but it could also be caused by something totally not related to dysautonomia.
  12. Look up coat hanger pain. It’s quite common in dysautonomia.
  13. Honestly I’m not a doctor but it seems unlikely that three days of doing this would send you to the ER, unless something else was already going on in your body. If y are already in a flare, then yes, anything can cause it to become much worse. Exercise and wellness activities are all about what works for your particular body and mind. There is no particular activity that’s benificent for all people. Personally floor yoga exercises worked very well for me, and I started with only 5 minutes. Starting small doesn’t hurt and if your symptoms aren’t triggered you can quickly build up.
  14. Same here, I can’t wear abdominal binders and get uncomfortable even with panty hose. Pooling isn’t bleeding. It’s blood collecting in the blood vessels in parts of your body below your heart. You can lie down to make it go away, so that your whole body is level with your heart. Increasing your blood volume by drinking lots of salt and water tends to help with pooling.
  15. You could check on dysautonomia websites but it’s unlikely there is a lot of research at this stage on dysautonomia and COVID vaccine. It is a judgement call. The vaccine makes it unlikely that you will wind up in the hospital or on a ventilator with COVID or that you will get severe COVID symptoms. To me any temporary vaccine symptoms however harsh would be worth it fir peace of mind, especially because full blown COVID on top of POTS would be really bad. Even just the worry of going outside or running to the store and possibly contracting Covid causes so much stress, washing hands, socia
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