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Everything posted by MomtoGiuliana

  1. And I would add that perhaps a third option is that severe symptoms will come and go throughout your life--not sure if that is the same thing as "chronic" exactly. I have had two severe episodes in my life, which caused me to be disabled. Both times, I improved within months to being functional and eventually exercising again. My symptoms are mostly mild, most of the time otherwise.
  2. Yes. It became more severe when I had a relapse last year and was diagnosed with low B12. Taking B12 supplements over months may have improved it, or maybe it is a symptom of POTS. For me it did improve as my other POTS symptoms improved. These days I do experience it, but it's very mild.
  3. I also get a dizzy odd feeling in my head when lying flat, at times. Even if my other POTS symptoms are minimized.
  4. Thank you. And thank you to Edriscoll for all that you do for the forum and the website, and the organization. It's a huge job -- you are the glue that keeps it all together and functioning!
  5. Yes I have been severely fatigued to the point of being bed/couch bound for hours or days or weeks. It can be a symptom of POTS. I do think it can be triggered by overdoing physical activity when in a bad POTS flare.
  6. Patients with POTS may or may not have BP changes. The defining feature of POTS is heart rate increase of 30 bpm on standing. From our website: The criteria for diagnosis of POTS is: (1) a sustained increase in HR of at least 30 bpm within 10 minutes of standing (often with an absolute upright HR ≥ 120bpm); (2) in the absence of sustained orthostatic hypotension (drop in BP > 20/10mm Hg); (3) with symptoms of orthostatic intolerance for at least 6 months. In patients < 19 years of age, there is a higher HR threshold for POTS (increment  ≥40 bpm or absolute uprights HR  ≥ 120 bpm) due to physiological orthostatic tachycardia in adolescents and children (Singer et al., 2012) (Arnold, Ng, Raj, 2018) POTS patients experience a myriad of symptoms, in my experience. My own symptoms have run the gamut and varied over time. We have a list of symptoms that have been reported by various medical journals here: https://www.dinet.org/info/pots/pots-symptoms-diagnosis-and-prognosis-r96/ Severe weakness and exhaustion are symptoms of POTS and I have personally experienced it. It is possible to have POTS and OH.
  7. Probably you know this, but staying very well-hydrated is essential for most of us with dysautonomia. Added salt also generally seems to help many of us. I find this can help me with brain fog. I agree that diet and rest are also important factors.
  8. @JimL b/c of the gastric band, have you been tested for vitamin deficiencies? I was found to be B12 deficient last year (I am a vegetarian but it never occurred to me or my doctor this is a risk factor for low B12--as is generally getting older!). People who have had gastric surgery are also at increased risk from what I read at the time. I had no idea what a toll low B12 can take on your nervous system. I had a severe POTS relapse last year that disabled me for 2 months--it included a lot of digestive problems which I had not had before with POTS. Do you take a B12 supplement? You may want to have your B12 level tested and consider taking supplements anyway even if you are not found officially deficient. B12, from everything I have read, is safe to take in large amounts b/c it is water soluble. Apologies if this has already been discussed elsewhere in the forum with you.
  9. 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.
  10. 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.
  11. I am not sure where you read this, however, I have seen no studies that link POTS to these other conditions.
  12. 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/
  13. Something to do with natural diurnal variations in cortisol? I think this was suggested to me once.
  14. 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.
  15. Perhaps this article is helpful: https://mdedge-files-live.s3.us-east-2.amazonaws.com/files/s3fs-public/issues/articles/Akdemir_PrematureVentricularContractions.pdf
  16. 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.
  17. 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.
  18. 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.
  19. 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/
  20. There are past discussions about this. Here is one: https://www.dinet.org/forums/topic/10761-adrenaline-and-watching-movies-games/
  21. 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.
  22. Yes I have had two very severe POTS episodes in my life. Both lasted months and I was too disabled to work during these times. I did go back to full time work. One thing that helped me last time was continuing to get IV fluids once a week for a few weeks after going back. In general getting adequate salt and fluids is important for me to feel well, so hopefully if you need that, which likely you do, you have a job where you can drink fluids as much as you need to (which includes maybe more bathroom breaks too). Best wishes with returning to work!
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