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Everything posted by yogini

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. I don’t have raynaud’s
  7. Yes, but helpful and important to check during an episode.
  8. 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.
  9. 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.
  10. It's a pretty common symptom. It's associated with high and low blood pressure and changes in HR.
  11. 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).
  12. 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!
  13. 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
  14. 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.
  15. Gravity pulls the blood downward. It collects below the heart, including in the abdomen for many people. This is especially the case after you eat. I personally can't tolerate abdominal compression, but it helps many people.
  16. Hi The heart is the muscle which palpitates. You would only feel that in the area around your heart. In other places in the body, it's just a blood vessel pulsating. If you feel it in your neck be sure and tell your doctor, as they may want to do an exam of your carotid artery.
  17. My understanding is POTS is a sustained increase in HR, whether or not your BP changes. It's quite common for those of us with POTS to have a decrease in BP after standing. In other words, many of us are also orthostatic, diagnosed with both POTS and OH or NMH. I have both diagnoses. On some days my HR can be normal and my BP low. But most of the time I have higher than avg HR and low to normal BP. There are different views on whether the actual classification matters much, as there is a large overlap in treatments. Some doctors refuse to sat POTS or OH and give a general diagnosis of dysautonomia. Others don't prescribe beta blockers for OH, but honestly I took (and needed) beta blockers for years, combined with medications that stabilized my BP. That is a pretty standard combo but it's just a matter of trial and error and what works for your body. Everyone has a different mechanism for dysautonomia but in my case I am fairly certain my BP drops due to pooling when I stand. In order to maintain BP my then HR increases. Of course there are also some versions of POTS with high BP, so it is all very confusing!
  18. At night we don't drink fluids. I think that has a lot to do with it. It takes several hours after we wake up to make up for that.
  19. 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.
  20. 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.
  21. 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.
  22. 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. When your BP starts to get too high you reduce the salt, instead of allowing it to creep up. Water washes out the salt, so it is always important to drink water even when your BP is too high. I also adjust for my menstrual cycle etc since I retain more fluids around that time.
  23. 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.
  24. 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. It will be interesting to see what happens with the second dose.
  25. 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.
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