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Everything posted by yogini

  1. It's a free country so people can smoke and drink if they want to and they enjoy it. But totally agree in my opinion these aren't treatments. On the sodium when I was sick I drank one cup of broth about 750 mg sodium in the morning, then 750 mg at night every day along with lots of water. this works well for me. If you do it every day consistently, your blood volume will build up. Remember that dysautonomia is something that gets better slowly over time. Most of us actually focus on being healthier when we are at our worst, because that usually helps with recovery.
  2. You're right, the body can tolerate higher heart rates during exercise, but docs usually recommend for an hour a day. Some of us are exercising all day. If only it helped my waistline~ But I think there isn't any long-term damage from dysautonomia.
  3. I think it would depend on your symptoms and form of POTS. You may want to start keeping a log. When do you feel this? Did you eat something before that is causing the nausea? What time of day, what is your BP and HR when it happens. Identifying your triggers can help you treat the symptoms and you can also avoid the triggers. Your doctor can advise best, and you can also read up on the various treatments on the POTS main page and make suggestions to your doctor. If you are looking to increase your BP, mestinon and SSRIs have been shown to be effective, for example. If you're looking
  4. Nicotine is a stimulant, so it might help your blood pressure. But it's taxing on your heart and lungs. You might have to experiment but you could probably get the same effect from another stimulant or medication without the negative side effects.
  5. Do you have POTS or another form of dysautoomia? Which symptoms bother you the most? If you have high blood pressure and dysautoomia, most doctors would not start off with florinef because there are so many other treatments that don't increase blood pressure. It's interesting that you already take Metoprolol, a beta blocker, which is one of the prescribed treatments for POTS. It generally helps with high HR and high BP. I can understand why you might be uncomfortable. I don't have high BP but many others here do. You might want to talk to them and hear what mediation they take and
  6. Though only a doc can diagnose you, what you are describing sounds very much like POTS. Symptoms wax and wane. You don't have to have tachycardia each time you stand. If you get 30+ often enough ad you see HRs of 130-140s when standing that indicates POTS.
  7. POTS and NMH are very similar/related conditions. I wasn't sure if hearing loss for a few minutes was a common symptom of POTS, but it seems a few others here have it too. You learn something new every day! As long as you mention the symptom to your doctor hopefully he/she would advise.
  8. What's the reason he can't tolerate the heat? Does his BP drop or his heart rate go up? You might be able to treat the specific symptom that occurs. Another idea would be to look into cooling garments.
  9. GI symptoms are common with dysautonomia. Tachycardia and other symptoms wax and wane - part of the reason it is hard to get diagnosed. It can be helpful to keep a log of your HR and BP at various times in the day when you are starting out. And many of us had a sudden onset just as Pippe describes.
  10. This is a very common symptom of dysautonomia. It's very scary at first, but the best thing you can do is stay calm, take deep breaths and try to remember you will feel better as soon as you get out of the crowd. It may sound strange but I used to practice going to stores (just for 5 minutes at first, then for longer periods) to accustom myself. That helped. I don't think most people take a specific medicine for this symptom, but it will improve when your other symptoms start to improve.
  11. Find other fluids that you can tolerate. How about ginger ale? Eat ice or italian ice? I started with stretching and exercises on the floor and worked my way up to a bike. A bike is really hard if you are just starting exercise and if you can't it, start smaller. Do it for 1 min or 5 min and work your way up.
  12. It seems she has several complicated conditions. It might be hard to pinpoint which condition is causing the symptoms. However if you have dysautonomia it is helpful to track HR and BP. Those can be easier to treat. A beta blocker can be taken every day and that is an option to talk to your dr about if you are finding that her HR is consistently high.
  13. Have you measured her heart rate and blood pressure when this happens?
  14. I think it would be worth mentioning this to your doctor. It could be POTS or something else.
  15. Do you live in an area near bad weather? There is a hurricane approaching and this can affect BP even a few days in advance. Even without a storm you will have natural,fluctuations in BP - it might not be the salt intake that is causing the low BP. Menstrual cycle is another common factor, for example.
  16. Your dr could explain best but I don't think there is a time limit that your HR would need to go up in the first 10 minutes. IF that was the case the test would only be 10 minutes! A normal person would have a very small HR increase on the tilt. And most people with POTS do not faint at all. Not sure if you received meds during the test which caused your HR to go up all of a sudden.
  17. Hi, I would check your pulse and BP a few times when you feel out of breath, to note for your doctor.
  18. Oedema means you are retaining too much fluid. It’s not likely to cause the same symptoms as dehydration even if the fluid is in your legs.
  19. Wow I didn’t realize he still saw patients! I would want to take my picture with him if I met him. Though I think your best bet with Dysautonomia is someone who spends full time treating it like Dr Grubb.
  20. Hi I don’t think exercise is for a particular symptom but to improve Dysautonomia overall. Dysautonomia can cause some anxiety but people take SSRIs to help with Dysautonomia symptoms (heart rate and blood pressure). If you have constant anxiety/panic in addition to Dysautonomia that may need to be treated separately.
  21. Dysautonomia isn’t autoimmune. Blood volume increases during pregnancy (and decreases with childbirth). That’s usually why some people feel better during.
  22. Pregnancy can make dysautonomia worse. Blood pooling is a symptom of dysautonomia, causing blood vessels not to constrict properly. This symptom (and the condition itself) aren't related to physical fitness. You can be as fit as fiddle and still get hit with full blown dysautnomia. That's what happened to me and many others. If you are able to exercise, though, that might help with improvement of dysautonomia symptoms in the long run.
  23. If you are having diarrhea the most likely cause would be a stomach virus. It might not be related to POTS, but you will feel better if you rehydrate.
  24. Some people have ups and downs with dysautonomia. That is what the other posters seem to have mentioned. If you are getting steadily worse over time that is something to mention to your doctor, especially if your BP and HR are fine at the time this is happening. It could be dysautonomia or something else.
  25. My understanding is that if you have a sustained drop in blood pressure you have orthostatic hypotension (which also has a bunch of other names). If you have a sustained increase in HR of 30+ you have POTS. You can have one or both of these. Syncope or presyncope isn’t needed. People on this forum disagree but there is a very large overlap on treatment of this family of conditions, so I personally wouldnt dispute that part of your doctors advice. It’s a lot of trial and error to find the right treatment.
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