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Everything posted by Midori

  1. THanks for your reply. I think those IVs may be a great idea. How can I get my doctors to do this? I also think I need to check my ferritin levels. I see a hematologist soon and I will ask her to run some tests. In the past they have been ok but my b12 is always on the borderline low side. RBC always slightly under but red blood cell shape and size normal. As for diet I eat no potatoes, pasta, bread, wheat flour, barely any sugar and zero caffeine. And I only have one glass of wine..if that, a week.
  2. Hello guys I was diagnosed with POTS a few months ago but they think i've had it for much longer. A supplement containing niacin set it off in late July and since then, while my standing tachycardia is coming down (was 140s now 1115-120s) I get these weird events that have landed me in the hospital a few times since Aug and I don't know what they are...but they really scare me when they happen. With that very first reaction to niacin back in late July I have been getting these adrenaline type feelings. They are coming almost every two weeks. All but the first happen wh
  3. Thank you so much for your reply. And yes it was only when I too had those severe symptoms recently and came across POTS online did i know. I'm hoping once I talk to a specialist I will understand what has transpired over the last decade and a half and it will make sense finally.
  4. Thank you so much for your reply. And yes I think your right. When it started there really wasn't any information on it really. Once I stumbled upon POTs a year or so ago but I thought it had to do with BP and dismissed it as mine was always good. Little did I know it pulse and that mine was crazy! lol And yes, it will be so SO nice to finally have validation.
  5. After 15 years of issues in multiple systems of my body and so so many doctors I believe that I have POTS syndrome. I will be going to an internist/ cardiologist this week to seek diagnosis and hopefully get an appointment with a specialist this year. My progression: -At 18 I developed IBS. It was an odd form because it really was just the time it takes for me in the bathroom is very long (15-25 minutes). I had a colonoscopy done etc and they did not find any abnormalities. So life went on. - In my early 20s I started to feel like what I thought was "stress" in circumstance
  6. I am awaiting my diagnosis for POTS this week, so take what I have with a grain of salt, but if I have slept poorly yes I do. This morning I felt a bit like that and took my pulse and it was much higher than normal upon waking.
  7. Yes, we have to be our greatest advocates. After 15 years of this I feel like so tired and much like I’m suiting up for another battle but I’m also feel great relief that I finally have found the core of so much of my issues (neuropathy, IBS, incredible stress type feeling that only went away with lying down or worsened with pms that I know know is my heart racing). Thank you so much for that book recommendation! I was hoping to find a book on POTS. I will definitely check this out. Thanks so much!
  8. I TOTALLY understand what you mean. I have had 15 years of “mystery illnesses”. Doctor after doctor and so many doctors dismissing me only for two or three doctors down the road to figure out the issue. It took 3 doctors just to figure out my peripheral neuropathy as it was only temperature dependent. it’s been a long road. Next week I go in to hopefully get this diagnosis of POTS but I get sort of weary just thinking about explaining to this doctor, showing her all the evidence etc. it’s so exhausting.
  9. Thanks so much guys. I’ll give t a whirl this week and let u know how i do.
  10. I think you’re right about fluids and bed rest. At the hospital the IV seemed to set me right a bit for a day or so. ALso lying down gives me some relief. Thanks for your reply.
  11. Oh how I hope that isn’t the case. I want to try some B12 this weekend as I am borederline deficient.
  12. I wanted to add as well, when they say that 30 bpm, that’s from lying down to standing correct? Sitting to standing will give an increase of 20-50 BPM but from lying it’s much more. lying down can go from 60 BPM up. Thanks!
  13. Thank you everyone for your replies! This is really interesting. I agree with you guys. It’s pronsbky much more nuanced. when I took my husband’s pulse the other day he doesn’t even budge when stands up. Exactly the same sitting and standing!! Lol today I am sustaining quite high all day when I stand around 100-115. Which is enough so make me feel bad. Thanks again
  14. So going to my doctor next week to confirm my diagnosis of POTS. I know I’ve had it for 15 years I think. While all my symptoms had been hovering along the last year or so, one b-complex pill I took two weeks ago has messed up my entire system royally. i took a b-complex pill and within minutes turned bright red all over but so red and for so long I was told it was a niacin overdose probably because the vitamin company didn’t regulate its dosage properly. A few minutes into the reaction and I lost balance and fell into the wall. then I thought I was goi
  15. So, many sites say that upon standing upright, from lying down, you should go up more than 30 bpm above your lying down pulse. What I don’t understand is ‘some’ level of sliding back down still within the criteria of pots? Or are you supposed to be maintaining that exact initial standing pulse the whole time? For example for me, if I lie down I’m around 70. I stand up and i shoot up to 120-130 for a few minutes. Then slide down to 105-ish and stay there for the foreseeable future. Sometimes I may wobble into the 90s. But always that initial stand up is 120 or 130 for a minute or
  16. Thank you for your responses. That is very interesting to know. Just now I measured myself, sitting to standing is back to normal! But an hour before I measured myself from crouching to standing position and it was wild While crouching I was 65. when I’d stand it would shoot up to 120 or 130. I’d return to crouching and same thing: 65 or 70 Back up to standing was 120-130 again. I felt like I would pass out and stopped. I’m afraid that when I go to get tested it will be a “normal” time.
  17. Thank you so much for your reply. Yes, I’m just looking for experiential advice. That is interesting to know there are good and bad days. For me it seems to be good/ bad but even throughout the same day. Last week I measured it and it was abnormal early in the day and normal later when I compared lying down/sitting and standing again. Anyone else experience this? Thanks so much!
  18. So sometimes when I go from lying to standing there is a big difference. Like this morning my pulse went from 70 to 120 and then settled at 100 or 110 for the next ten minutes. Other times there is zero difference. I don’t know why. I am 36 and have had symptoms of POTS i believe for last 15 years. I have only come to this suspicion recently and wanted to ask a few questions before I go to my doctor next week. My other major symptoms are, brain fog, weakness, lightheadedness, fatigue, IBS, sometimes always feeling very hot. I have been told that I have anxiety whic
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