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About Pistol

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    gardening, my family, reading

    " And I think to myself - what a wonderful world!"
    Louis Armstrong

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  1. I agree!!! I love growing plants, whether it is inside or in my gardens outside. I have many inside plants, my show piece being an Orchid that always blooms - currently with over 30 blooms!!!!! My husband purchased it years ago from a supermarket for mothers day, and after 6 months it looked dead. I was ready to throw it on the compost pile when I saw a tiny little new sprout ... I researched how to care for orchids, bought the proper soil and plant food and repotted it - 8 years later it is breathtakingly healthy and rewards us with constant blooms. I am so proud of it! I find that plan
  2. @dancer65 - still get that Urine test, just to make sure it is not a UTI! If there is blood in the urine but no bacteria it could be IC!
  3. @dancer65 - have you been checked for a UTI? Your symptoms could also be from that. A simple urine sample can detect that. UTI's can be very hard on many women, but especially on us "older" specimens ( I am 54 ). A UTI will cause a flare since it is so stressful on the body. I just had one and as soon as the fatigue and orthostatic intolerance started I had my urine checked and they put me on an antibiotic. My only symptoms were bladder spasms and the urge to empty my bladder - sometimes incompletely as with you. Your doctor can order one over the phone. The fact that you had blood in yo
  4. @dancer65 - yes, urinary symptoms are common in POTS. For myself I find that when I am over stimulated and my adrenaline runs high I pee all of the time, sometimes up to 1000 ml urine in one hour! I think that is what then leads to low volume and that triggers the ANS malfunctions. --- I also suffer from Interstitial cystitis, which also is a common condition in POTS. It causes many unpleasant symptoms, including bladder spasms, having to pee all the time but only a little each time, peeing but stopping before you are done ... what I did was go to a urologist who scoped my bladder and diagnose
  5. I soo agree! This was the case for me: they kept ordering IV fluids temporarily for flares b/c they worked so well, but they refused to order a port so I could get them every week. The risks of infection and blood clots were too high. When my PCP finally agreed to the port and ordered home infusions I became a changed person. My quality of life increased immediately, and I have been so much better for the past 2 years b/c of the fluids! I never responded too good to meds, although they did help, just not enough. With the IV fluids I am well ( as long as I live within my limits, still am houseb
  6. @deeceet - welcome to the forum! Thank you for sharing your experience. I do not suffer from paresthesia but my husband does. He gets spots somewhere on his body ( usually legs and arms ) where he feels as if someone pouted cold or hot water on him - but nothing is there. We also have no idea why this happens. Thankfully it never lasts.
  7. @TKH - welcome to our forum! --- Yes, change in barometric pressure is known to cause worsening dysautonomia symptoms. For me it is not only the weather changes but also travelling: I live at a high elevation, mountaineous region and when I travel to a lower elevation or even to sea level I am in flare right away.
  8. @cmep37 I am so sorry you have to go through that! Thank you for sharing your experience - it confirms what I was told: simply having POTS does not put at risk for worse symptoms form COVID but we will most likely experience an epxected bad flare from being ill. What you are doing to make it through the flare is exactly what we are supposed to do, and I am glad you emphasized on doing both rest and getting up regularly to prevent deconditioning. Since we feel so miserable when in a flare getting up is a challenge - but a necessary one. Wishing you a speedy recovery and best wishes!
  9. @MTRJ75 - interesting articles. Thank you for always sharing your research with us 😉👍
  10. @Elizaangelica - Yes, POTS comes and goes for all of us, but it also is quite common that sometimes meds that have helped us suddenly stop working. When that is the case - at least in my case - my specialist or my cardiologist have recommended to either increase a med or they changed me to something else entirely. To determine if it is a flare or worsening POTS we have to ride it out, meaning do what is recommended during a flare: the typical increase in salt and water intake, compression hose, AMPLE rest and daily exercises to tolerance. If you are currently mostly bedridden here is wha
  11. @Stephanieann8131 - is it possible that your resting HR has always been that high and you are so used to it that you feel different when your HR is normal? Maybe that is why you felt faint - your body is not used to going below 90 - ? Now I can see why you don't want to take meds that bring your HR down to normal! -- I have the same thing with my BP. I always had a very low BP and only when I started with HPOTS did my BP ( and HR ) go way up. I feel absolutely HORRIBLE when my BP goes up! Since I am well controlled with meds right now my BP runs as low as 80/50 - most people would feel very fa
  12. Hello @endless_august - welcome to our forum! I am so sorry you are experiencing all of these strange symptoms! --- When reading your post the only thing that came to mind is some type of neuropathy. You mentioned a history of genital herpes - a family member of mine is suffering from that and he has weird skin sensations including unexplained pain. He had shingles once and since then he has rashes and pain between his shoulder blades. --- Personally I would not be satisfied with the neurologists interpretation of your MRI - I would seek a second opinion. It sounds to me that injury in T1-T2 c
  13. Another thought - has your doctor considered IST ( Inappropriate Sinus Tachycardia )? POTS and IST often get confused since both share tachycardia, but in IST the resting HR is usually high, whereas in POTS the resting HR is normal.
  14. Hello @Stephanieann8131 - welcome to our forum! --- Yes, I feel faint and have chest pain as well as breathing difficulties when I have increases in HR and/or BP. I was told that this is due to changes in circulation in the chest from dilating or constricting blood vessels. I am not sure why you would be concerned about lowering your HR when your resting HR is so high? 85 to 95 BPM when sitting seems very high, Are you sure your sitting HR is 95? From 95 to 120 is 25 BPM - for POTS the HR increase is 30 BPM or more within 10 minutes of standing. I am happy to hea
  15. @chzrles - that is a symptom of dysautonomia, so either an autonomic specialist or a neurologist .
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