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Everything posted by yogini

  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
  16. Have you tried compression garments or even Spanx? This forum us a helpful place to vent and discuss your symptoms. Normal people will not understand. I don’t even bother anymore.
  17. When you lay down your blood should distribute evenly. There is no pooling in the head. You can check your blood pressure as maybe it’s going too high when you lie down
  18. Have you tried sitting down in the shower? You can use colder water and it also helps to bathe late at night, way after you’ve eaten
  19. Hi, so sorry you are going through this. I’m not a doctor but it sounds like you’ve come to the right place. Dysautonomia runs in families. If your daughter had a positive tilt table, and you are having dysautonomia like symptoms there is a very good chance you have it. The heavy legs resonates with me. If you can manage, slow down, start measuring your heart rate and blood pressure and try to do more moderate physical activities and rest/lay until you can sort out your diagnosis and treatment. If you have dysautonomia doing the wrong kind of exercise can make things much worse. I
  20. Exercise is the biggest trigger for dysautonomia and when combined with anything else unusual our bodies don’t handle it well. Whenever I fall outside of my normal POTS-friendly routine - whether it is to fly on a plane or to drink alcohol or to get a flu shot - I definitely pause exercise for a few days and just rest. I hope you feel better soon.
  21. I would be wary of going to a doctor that doesn’t want to give me their 100%, especially if paying out of pocket. No way.
  22. Hi I would mention this to your doctor. I have heard this associated with other conditions not related to POTS which you may want to have checked out to be safe
  23. You can check with your doctor, but if you've done something a few times before and didn't have a reaction, it could just be the activity of applying the color lifting arms above the head, etc. that caused the symptoms. Sometimes when we are in a flare, this happens.
  24. I'd guess a high % of dysautonomia patients have had at least one terrible/scarring experience with an EMT or an ER. Overall I have had mixed results with EMTs the 3 or 4 times I dealt with them. A couple of times they were very helpful, noticed I had low BP and high HR. A couple times they told me I had anxiety. One time I was prescribed Xanax when I got to the hospital which I didn't need. IV saline would have worked EMTs and medical professionals need to learn to listen to patients (especially women) evaluate their physical symptoms and not give psych diagnoses that they aren't
  25. I feel for you. It is a long. painful and scary journey. I really hope the specialist is helpful. But if not, keep in mind many of us went through several doctors. Most of us eventually find treatment and improve. Hang in there. Let us know how your appointment goes.
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