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yogini

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About yogini

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  1. A lot of members on the forum post questions similar to yours. It is normal to be scared when you are first diagnosed. However, the people who are posting are just asking questions the same as you. I wouldn't take that post (or any other post here) as proving a connection between POTS and other heart conditions or heart disease. Dysautonomia is a disorder of the autonomic nervous system, not the heart. Most of us in fact have a normal heart and that is one of the challenges with getting diagnosed. Your personal doctor can advise you best what your risks are. I'm not a doctor, but have been on and off this forum for 15 years. I've seen many people ask this question or similar questions. Generally POTS patients would not have increased heart-related risks unless they have another, separate heart condition or health issue.
  2. Have you gotten workup from your cardiologist? Most people with dysautonomia have a healthy heart with regular sinus tachycardia. Everyone (even without POTS) has some irregular heartbeats and they are usually not dangerous, unless your doctor says you are. When we get POTS we are much more attuned to our heartbeats, so we tend to notice these more and worry more. I certainly wouldn't worry based upon posts in this forum.
  3. I think a traumatic event like a death or funeral could also cause your symptoms to act up. Hope you get some rest and feel better. Have you tried compression hose?
  4. I don’t believe there is “withdrawal” from Florinef the way you might have with an addictive substance like a painkiller. It’s a steroid so your body may take some time to adjust. Most people who have a hard time warning off are able to handle reducing their dose by a fractional pill just as you describe without feeling much effect.
  5. Could her oncologist coordinate with the dysautonomia dr or do some research? She and you should not have to figure this on your own. In general I think you’d want to monitor her heart rate and blood pressure and make sure she is hydrated, and consider the side effects of the meds/treatments she’s on and how they might affect her HR and BP.
  6. If you are having multiple changes effect from licorice, Florinef, herxing, it might be hard to tell what is causing what. If your blood pressure is coming down from reducing Florine’s, how about compression hose to keep it up?
  7. Julyrose said meds that expand blood volume are contraindicated for her and that she adds salt and drinks gatorade. Those have the effect of expanding blood volume. That's why I suggested that she coordinate with her doctor.
  8. it is unusual that you have high blood pressure in your brain but keep fainting at the same time. Usually people faint when there isn’t enough blood getting to the brain. Have you had your blood volume tested? if meds that boost blood volume aren’t allowed you may want to ask your doctor if you should be increasing your salt intake. The purpose of the salt is to increase blood pressure and blood volume.
  9. In my opinion broth is the most effective drink is broth followed by lots of water.
  10. Many people here do have allergies or asthma which is separate from dysautonomia. I’d get this checked out sooner than 3 months if you can.
  11. Do you need to go in the summer? It is extra hot and crowded. I would spend some time researching Disney for people with disabilities ahead of time - and also just how to navigate the park. There are many things you can do to prepare and make your trip less stressful. There a lot of good books and websites dedicated to this. Don't hesitate to use all of Disneys disability services if you need them. Who cares what people think about the scooter, when you'll never see them again! I've grown up going to Disney and been their twice post-POTS. Bbut by the time I went I had very minimal symptoms left. I could walk around, wait in line and go on any rides (though I skipped some out of caution). I do tend to get tired, so just slept in and met my family a few hours later in the day. We stayed in Disney properties so there is free transport by bus or rail. And made sure to stay hydrated. You can bring in food and drinks, last I heard.
  12. This could be one of.a number of things. I get fluid from my nose when I tilt forward which I always assumed was mucous. I also fluid from my ear which I assume is water. Everyone is different but a doctor could tell you for sure.
  13. Dysautonomia has some scary symptoms, including chests pains, but in and of itself does not usually cause a risk for a heart attack. However, your doctor could advise you best. He or she could do a full workup, take into account your family history and give you guidelines on if and when to go to the hospital.
  14. Many people with dysautonomia drink 3-5 liters per day. Check with your dr, but 2 liters does not sound like it would wash out your salt or electrolytes, and washing out salt is often helpful if you have high BP anyway.
  15. Many with dysautonomia are diagnosed with another condition like gastroparesis, lactose intolerance, celiac, etc. You may want to get tested for these if you haven't already. Personally I've found eating foods with fiber clogs me up. Especiallywhen my stomach is bothering me, I do much better with very simple easy to digest foods - Jello, baked potato, rice, steamed chicken, etc. Lots of fluids are also helpful.
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