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yogini

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Everything posted by yogini

  1. 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.
  2. 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.
  3. 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
  4. 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.
  5. 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
  6. 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.
  7. I am so sorry you are in a flare. Sometimes I have a hard time lifting my arms or my head. This happens to me in the morning even on days when I am healthy. I just feel like it's too much work to move and that happens sometimes even when my brain is wide awake. I often listen to audiobooks at that time as that's a way to do something without requiring any energy. This feeling fades away, sometimes after drinking water, other times after falling asleep and waking up again. When I am in a flare it takes a few days. Feel better soon
  8. If you have low blood volume then expanding through salt and water even when your blood pressure is normal should help. But that's why it's important to monitor BP - because if you have too much salt and water it will creep up. By the way, most people with dysautonomia don't actually have low blood volume but even then our symptoms mimic low BV. The reason for this is that our blood vessels don't constrict properly in the upright position, so the blood pools in the lower part of our body instead of spreading evenly the way it does in healthy people.
  9. Our condition waxes and wanes with so many factors so we have to keep adjusting. With women, even things like the menstrual cycle can affect blood pressure, along with things like weather. Have you tried keeping a record of your heart rate and blood pressure. I found that really helpful when starting out.
  10. A heating pad dilates blood vessels and would probably make pooling around your stomach and likelihood of fainting worse. Have you tried eating very small amounts of protein? What helps me the most with eating is drinking two large cups of peppermint tea in the morning. I can't eat before that has absorbed into my system. I assume this is because I am waking up dehydrated and it boosts my blood pressure. When things were really bad, I drank broth followed by water.
  11. What is she eating? Dysautonomia patients often do better with small amounts of food more often. I find that true earlier in the day - I can eat less and I can have a big meal for dinner. I don't faint but if I eat a large breakfast I can't function or think. It might be helpful to measure her blood pressure at in the morning before she eats. Drinking water or gatorade first thing in the morning might help with the BP and then she can eat a little after her body absorbs the drink(s). Coffee also works for some people but that can be a mixed bag
  12. I drink peppermint teat It has no caffeine. It also helps settle my stomach. Most herbal teas would work. Also soups are high in salt, a good way to help POTS and stay warm,
  13. It might feel to you like everything is connected. But unless a doctor has advised that these are related, it might make sense to assume that the post nasal drip is not related to low blood volume or skipped heartbeats. There are some co-conditions like mast cell that maybe could apply. Otherwise I haven’t really heard of post nasal drip as a POTS related symptom. You may just need a prescription med rather than an over the counter med like Claritin. If you are worried about low blood volume or skipped heartbeats, a cardiologist can help with those separately.
  14. POTS is a sustained increase in HR beyond the 10 minute mark. In other words my if HR was 75 sitting, when I stand it goes up and after 10 minutes of standing still it’s 105 or higher.
  15. It’s quite common to feel better later in the day. No one has quite figured out why, but that’s totally common. I am not sure countermeasures would help with that. But if you have particular symptoms (like low blood pressure) earlier in the day people might have ideas to help.
  16. I agree it is hard to lose weight with dysautonomia, when we feel better resting and not being active. When exercise is more limited, it's even more important to manage your diet. I've found a bunch of things that I like to eat that are a combo of lean meat, veggies, low in fat and I alternate between those recipes. I try to avoid processed, packaged and fried foods and don't keep any of those at home. A bag of mnms disappears too quickly, so better to just not have it around. I'm about 10 lbs overweight and I'll bet if I was more careful when I got takeout that would go away.
  17. I am so sorry you are going through this, but I would say that your diagnosis is not wrapped up in any one doctor. A person who hasn't examined you isn't in a position to give you a diagnosis. So rather than getting offended. I would take it as a reply from the doctor that he or she doesn't have the skillset to be ale to help you. It is much better that they told you up front, rather than taking up your time and energy.
  18. There are a number of conditions that can cause exercise intolerance. It is always hard to know but if a sustained increase in HR (or decrease in BP) is not one of your symptoms, I would put dysautonomia as lower likelihood for the cause of your symptoms. Not necessarily ruling it out, but maybe your time is better spent investigating other conditions first like with your neck and other injuries. Did you have a full cardiac workup with ECG, Echo, stress test, etc? And a full blood workup?
  19. REgardless of whith form of dyautonomia you have, many of the typical dysautonomia symptoms cause fatigue: low blood pressure, high heart rate, high blood pressure, lack of oxygen to the brain. The cause of the fatigue would probably depend on your particular etiology. Many of the medications we take - like beta blockers - also cause fatigue. I found that once I got on the right meds and got moving my fatigue decreased dramatically.
  20. I always get a flu shot without any POTS flare up. I do this to avoid getting dehydrated from the flu. This year there was an extra incentive. Once flu season hits, if you get a fever you won't know if it's the flu or COVID. Everyone in this situation will need a COVID test to sort this out, and there is already a shortage of COVID tests. It seems like it would be super stressful to have that happen, with POTS also in the mix. For me, it is a relief to remove the flu from the equation. For those who are considering it, earlier is better because there is expected to be a shor
  21. Hi. Many people with various forms of dysautonomia have a reaction to alcohol and/or caffeine. I am not sure that having a reaction would be informative toward a diagnosis.
  22. No change in BP is required for POTS. I hope you get some answers and start to feel better soon.
  23. Hi. Did you ever figure out the cause of your chest pains? And did they give you different options of medications you can take to treat them? I am not a doctor but I would guess there is more than one medicine available and experimenting with the medicines might help you figure out whether the dysautonomia-like symptoms are a side effect of your current medication, or whether you actually have dysautonomia. Treating dysautonomia is possible, but it can be a very long journey of trial and error and one that you really don't want to go down if you can avoid it by swapping out the chest pain
  24. I think chronic headaches are an extremely common symptom of dysautonmia. You can get a headache if your blood pressure is too low or too high and that is the most common cause. Headaches can also be a side effect of many of the POTS medications. Of course there can be other co-condtions with dysautnomia which also cause headaches. So it is a bit hard to determine the cause! When I got or get flares I sometimes had a headache or migraine for 2-3 days in a row ad there was nothing I could do but stay in bed all day. I found my headaches almost totally went away when my other symptoms
  25. If he has dysautonomia, I am guessing he first started noticing it when he went to a higher altitude. I don't believe dysautonomia can start just by visiting a high altitude. But many of us suspect we had it for a long time (maybe even since birth) and didn't notice. Your father should maybe try to get an appointment with a local dysautoomia specialist and get a tilt table test. Or just do a home tilt table test.
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