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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. Yes. I had severe POTS during pregnancy and post partum which eventually pretty much resolved to mild symptoms--my child is now 16. However last year I suddenly developed severe POTS for a 2nd time. My B12 was found to be low. After several months of supplementation my symptoms resolved again to mild symptoms. There are published articles that link low B12 to autonomic dysfunction (I think the one study I remember found that teens with autonomic dysfunction improved with B12 treatment). There has also been a published article linking low Vit D to autonomic dysfunction. Many patients with POTS have borderline low potassium, from what I have seen here on the forum. I have it at times. Hopefully resolving these imbalances you mention will bring about improvement in symptoms for you.
  2. I have also had severe acid reflux at times that my POTS is also flaring. I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues. One thing that I remember helped me years ago was deglycerized licorice. Not sure why but it was more effective than any heartburn medication for me. Since this is an herbal supplement I would talk to doctor or pharmacist before using it.
  3. I think basically in the US anyway it is unusual to have a vitamin deficiency. Or anyway that is the general view. There has been controversy over the issue of Vitamin D. Iron can be low for many women and a CBC can assess this which would be part of a periodic exam. It is becoming more recognized I believe that low B12 is not that uncommon. Especially in people over 50. But even younger people who are vegan or vegetarian or develop difficulty absorbing it for one of many reasons including taking certain medications. Probably if someone is experiencing neuropathy most doctors would think to check B12--hopefully.
  4. Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested. I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year. After 6 months on high dose of B12 the symptoms resolved nearly completely.
  5. Wow, thank you for sharing. Really interesting. Many of us experience exercise intolerance--even after many other severe symptoms improve. This is important research!
  6. Interesting that you mention the grocery store. For the longest time I would get symptomatic when in a grocery store or almost any large store--even before I was diagnosed I would experience feeling unusual when in a large store--and it still happens to me at times. I have avoided places like Target etc for that reason in general. I don't know if it is the lighting or what sets it off. I have felt faint standing in line for longer than 5 minutes at grocery store, but that makes more sense.
  7. I get hand and finger cramps occasionally. It started around the time I was diagnosed with low B12. I see this was determined to be normal for you--hopefully your doctor is well versed on this topic. Low B12 can also cause autonomic dysfunction. In my case I had a full blown relapse of POTS along with other neurological symptoms until I got B12 shots and supplements over a few months. Low B12 is not uncommon.
  8. Wow I cannot imagine the difficulty and pain you have gone through. It's sounds extremely stressful. So glad there was positive resolution legally at least. Resolution with family members may be difficult. Thank you for sharing. It is true that we rarely know anyone's full story and all the stresses and difficulties they face. I am glad you found support here when you needed it, for your symptoms/medical challenges. Sending a virtual hug!
  9. I was also told by my endocrinologist that cortisol levels vary constantly--one reading is not necessarily very valuable from what I understood. I would discuss this concern with a doctor.
  10. I had this problem as well a year ago when I had a POTS relapse. I had never had GI problems prior--it came up fairly suddenly. I also found I had to eat very small amounts and avoid certain foods that seemed to irritate my system more. Yoghurt, bananas I remember seemed easiest to eat and digest. Along with the lack of appetite and feeling full, I had heartburn and pain in my intestines. This went on for weeks and I lost 10 - 12 lbs. I am also thin to begin with. You may need to see a specialist to determine what the problem is and what treatments may help. It may dissipate on it's own depending on the cause. In my case it was finally determined I had low B12. I had B12 shots and started a supplement--after two months I felt nearly back to my normal baseline. IMO low B12 was the culprit in my case.
  11. This is very common--to have worsening POTS symptoms just before and when starting a period. I am sure there is a relationship to hormones. I have heard theories but not sure there is a definite understanding of this.
  12. Could the sugar in the coke have been what dropped your bp? I have to say however that I have noticed more pronounced orthostatic hypotension after drinking coffee. I drink it black typically (and I am not a daily coffee drinker--maybe 1-2 times per week at most). Maybe it is something in coffee other than caffeine??
  13. I am not sure if I fit into the hyper category. However when I am in a POTS flare I have high bp when standing and I get surges like you describe. The thing that helps me the most--which may seem counterintuitive, is extra salt and fluids, and IV fluids if possible. Otherwise, increasing my beta blocker dosage.
  14. DINET maintains a list of physicians here. I see there are two listed as being in Pittsburgh. If you are able to travel there may be others you can consider on this list. https://www.dinet.org/physicians/
  15. Does your hr change from sitting to standing, or do you feel faint or have worse symptoms on standing? Have you had a tilt table test? Can you have your general practitioner check your hr and bp sitting and standing, at least?
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