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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. Reading their comment they seem to be giving their opinion that there is an increase in embolism due to having decreased activity (which is typical of anyone who is spending a lot of time inactive or even bedridden) or having a risk of clotting due to another condition.
  2. I continue to deal with swelling in my hands and feet. I am not sure it is worse than it was in 2010. It still resolves--eg overnight, if I have swelling in my ankles. I now attribute some of it to perimenopause and aging, as much as being related to POTS directly. I wear compression socks all the time now and that helps a great deal.
  3. I am not sure where you read this, however, I have seen no studies that link POTS to these other conditions.
  4. Here is information on our site about MSA. It is much more rare than POTS and extremely rare in young people from what I understand. https://www.dinet.org/info/msa/
  5. Something to do with natural diurnal variations in cortisol? I think this was suggested to me once.
  6. I think in many states you can simply contact them and let them know you are too ill to serve and they will excuse you without needing documentation.
  7. Perhaps this article is helpful: https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/issues/articles/Akdemir_PrematureVentricularContractions.pdf
  8. I am not aware that V-Tach is a typical POTS symptom or that POTS progresses to this symptom. Many of us do have PVCs and PACs which are annoying or disturbing but are benign.
  9. It's very hard to predict. Everyone's situation is different in terms of symptoms, level of disability; and things can change over time. For some people the flare ups can be worse over time, for others not. After I improved greatly, I would have short flare ups lasting several days to a week at most. Very few were bad enough to make me take off work. But last spring I had a severe flare up. I was bed bound/house bound for 2 months. Fortunately there are medications and other treatments that may help. You might look into IV fluids as an option. This has helped me tremendously. With pregnancy it can be more complicated to figure out what is going on bc some symptoms (eg nausea) may be more due to the pregnancy than to POTS.
  10. I only had one pregnancy, at age 33-34. I developed severe POTS (I was disabled and at times bedbound) during the pregnancy and it became worse post partum. I was sick for about a year. I did not attempt another pregnancy. However, I also did not have a diagnosis (except I was told I was depressed) until about 4 months post partum. There are medications and other treatments that could help during pregnancy. So much more is understood now too than 16 years ago when I was pregnant. Do you have a specialist you could consult with--along with a high risk ob gyn? High risk ob/gyns would know more about medications and pregnancy than other doctors would.
  11. Just wanted to make sure you are aware of our list of physicians: https://www.dinet.org/physicians/ Also there was this recent discussion that may be helpful to you: https://www.dinet.org/forums/topic/29957-dr-chung-john-hopkins/
  12. There are past discussions about this. Here is one: https://www.dinet.org/forums/topic/10761-adrenaline-and-watching-movies-games/
  13. Pedialyte has been helpful to me, also coconut water, which is actually even richer in potassium. I add salt to the coconut water when feeling particularly badly.
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