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  1. Ask your doctor but I’ve been told this is perfectly normal. It happens to healthy/non-dysautonomia people too. it’s not a cause for concern.
  2. Thanks everyone for the very kind and supportive wishes. I've seen POTS in the news a lot more because of Long COVID, so maybe that's why ERs here in New York City are much more aware than they used to be. I imagine a lot of confused people flooding the ERs with strange POTS symptoms the way I once did. I was able to meet with my PCP and he ordered an external ultrasound which I had on Friday. Seems it'll be a couple weeks by the time I get my test results and see a specialist but they think it is something like fibroid cysts or endometriosis that can be treated with birth control.
  3. I haven’t been to the hospital in more than 15 years. Today I wound up going to urgent care because of extreme bleeding from my mensural cycle for a couple of weeks which suddenly got worse today. The doctor was afraid that I needed a transfusion so she made me go to the hospital by ambulance. Every single person from the Urgent care doctor to the ambulance workers to the ER nurses and doctors knew dysautonomia/POTS. The doctor told me she has dysautonomia! It was surreal as this was the very first hospital I went to when I first got sick many years ago and people had no idea what I was talking about. Awareness has come along way. My issue is not resolved and I have to follow up with doctors for a bunch more tests, though it is likely something minor like a fibroid cyst causing this. But I still feel so happy that this was such a positive medical experience.
  4. There are a bunch of different causes for dysautonomia. What's going on in your body would depend your particular cause, which your doctor can best advise. Two other things to remember. Dysautonomia by nature has a lot of ups and downs. If you did the same exact thing every day, you might have some good days and bad days. Unfortunately that's just how it is. It's unpredictable and doesn't always make sense. Dysautonomia patients - no mater what the cause is - tend to all have similar stressors which do make things worse. Examples include exercise, menstrual cycle, hot weather, not drinking enough water, not getting enough sleep, overdoing activity, personal stress, travel, etc.
  5. No problem. This is a major problem for me even though I am “normal” with low symptoms otherwise. I literally eat meals of white rice, white bread and/or jello sometimes as that’s ll I can take. I can eat a side of veggies, no problem. But larger amounts or too much in one week and I am screwed. I don’t take any meds as it fixes for me just with eating light foods. Feel better.
  6. I personally get constipated when I eat fiber. Without getting too graphic, when I eat something with a lot of fiber - a salad or a bean burrito - it sometimes takes days to go through my system. During those days I have severe consolation often get POTS symptoms like headache and tachycardia. I think it’s because blood is drawn fo my intestines. My body handles best very simple food When I eat simple foods - chicken and simple carbs - I have far fewer issues. My body simply can’t handle too much fiber. The standard recommendation for high fiber may be better for healthy people with a normal digestive system.
  7. I don’t have raynaud’s
  8. Yes, but helpful and important to check during an episode.
  9. I think ti would be important to identify the cause of your nausea, as we are all so different on this forum. Are you measuring your HR and BP when the nausea is happening? Do you have any food insentivities or allergies? Is it the volume of food that's bothering you? For me often I have to drink lots of fluids before I eat. Ginger ale is always good or peppermint tea. There are also wristbands people buy for pregnancy which are electronic which work well to counter nausea.
  10. There are many many times where I have had to take a day or two off of life to stay in bed. If I simply can’t handle standing or sitting, I generally don’t. I find my body knows when to push and when to rest. I do think it is important to check your vitals when it is happening, though, so you can be aware of how to correct/adjust.
  11. It's a pretty common symptom. It's associated with high and low blood pressure and changes in HR.
  12. Doctors can be hit or miss. Awareness is improving, but I don't believe most cardiologists know how to treat POTS. Getting to the wrong doctor can actually set you back. If there is another doctor in your area on the Dinet list with a shorter wait, that might be worth a try. 3.5 months seems like an eternity but it is not unusual to wait that long to see a POTS specialist. You can also keep calling for cancellations. I am not a doctor, but most people do not get that much worse over a short period of time (unless something external happens like a car accident).
  13. Dinet has a doctors list on the website. If you can connect with a good doctor experienced in treating POTS patients, he will find improvement. Good luck!
  14. Honestly any food is fine to eat for breakfast. Many dysautonomia patients find it easier to eat less earlier in the day. Food is ofn easier to digest later in the day
  15. Eye pain can also be a migraine. I would definitely go to a doctor and get this checked out. It could be dysautonomia related or not. I would not assume it necessarily has to do with your eyes or will end in blindness. Sometimes chiropractors can be helpful and sometimes they can make things worse, so that is also something to consider.
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