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ReginaH's Achievements


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  1. My narrowed pulse pressure is what tipped everyone off to my pathology; that my aldosterone levels are low because my angiostensin ii levels are elevated, causing low blood volume. The low blood volume sets off the catecholamines alarm, raising heart rate. Check out this study from 2018: https://www.researchgate.net/publication/324234951_Angiotensin_II_Type_1_Receptor_Autoantibodies_in_Postural_Tachycardia_Syndrome You can think of it as a follow up to: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/ After this amazing study: https://www.ahajournals.org/doi/10.1161/01.cir.0000160356.97313.5d You might be best off reading them in reverse order.
  2. My blood pressure is normally like 106/73, as an example. So, it's not low but it's not high either. My issue is more so narrow pulse pressure. Does licorice root widen pulse pressure/help with blood volume retention or does it just raise BP? I ask because I tried midodrine and it just raised my BP but left it narrow, so I'd get readings like 116/94. I wouldn't want to try licorice root and have that happen again.
  3. So, I started doing Saltstick vitassium on top of my 3L of water with liquid IV and other electrolyte tablets and I'm overall doing much better but not perfect. I would only do Fludrocortisone at this point if it would mean I could intake less water every day. If that's not the case, then I may as well keep doing what I'm doing?
  4. Okay, so the sore throat probably wasn't caused by the Mestinon. I have no idea what that was! Mestinon seems to help me in quite a few ways, albeit subtly but it also seems to potentially cause issues with my breathing. Is this common? I wonder if it's worth continuing if it increases a feeling of pressure in my lungs, makes me cough, etc?
  5. Fudrocortisone vs Desmopressin? What have you had a better experience with? Which gave less side effects? Which helped you retain fluids better? Was either a life changer?
  6. It doesn’t feel like any sore throat I’ve ever had before. It’s just at the base of my throat when food begins to enter my esophagus. It’s like this numbness that still signals to my brain that I’m in pain when I swallow and because it was so vague I just kept trying to eat until it was obvious that it was too painful. Really hard to explain...
  7. I finally started trialing mestinon on Wednesday. This will be the first medication I've ever tried for POTS. So far, I think it does help keep my heart rate more steady upon standing and it also seems to make my eyesight less blurry. I'm tiny and sensitive so I'm only taking 15mg 3x a day. For side effects, it's hard to tell what's POTS and what's mestinon. I still feel really fatigued and sometimes a little "high". I'm slower in general and time tends to feel slower. I guess I can deal with that if it helps me with orthostatic issues but... Tonight I tried to eat dinner and my throat both felt numb and irritated at the same time. Swallowing, especially once food got to the base of my throat, began hurting. It got so inflamed that I had to stop eating. Is mestinon causing this? Has anyone had a similar throat issue? I obviously can't continue the medication if this keeps happening because I need to eat... I couldn't find anywhere on DINET, POTS groups, or the internet that this is a thing.
  8. @Sushi Just realized you wrote about Cardiac rehab as well. Excited to start. Sounds promising!! I hope it's not a long wait. I think there's only one place near me that does it. My neuro is having my cardio write the script to help with insurance and she really wants me to do the actual program because she thinks I should be hooked up, after reading my post-exercise Kardia results.
  9. I just got back from the neurologist. She said that she wants me to do cardiac physical therapy for two months and then to come see her again. If I don't improve, she will put me on mestinon. Unsurprisingly, she didn't really know about the PP thing but said I should discuss with my cardiologist, who I'm talking to on Friday.
  10. I was trying to avoid IV fluids but this sounds promising. How has this affected your veins over time? Is this in addition to drinking at home with electrolytes or does it replace the need to drink a 1-2 liters every day? I'd really like to avoid medications if they're not very helpful. My neurologist so far has been helpful. One of her areas is autonomic dysfunction on her list, which is cool. She's not well known for it though, that I know of, so I may end up also working with other specialists in the future. I'm excited to see her today and share my measured symptoms with her. I might talk to her about injections.
  11. I just basically want to feel less alone because mine is, every single day, in a very low range. I think the lowest I've seen mine is 15 while standing. I want to hear from others who experience this chronically, so I can find out if the prognosis is still good for me. I want to know if I can still live a long life if I keep getting readings of like 18 and 21 on a daily basis. I also want to see if others haven't thought about this and that if they did the measurements, it might actually be more common than people realize... The example I gave in the OP was from a morning when I was laying down.
  12. Upon searching the forum, I find it shocking that this term never comes up, except in my introduction thread. Is it just that doctor's generally don't know to look out for this or is it a rarer symptom than I realize? Can everyone who has a blood pressure monitor, who is reading this thread, take their blood pressure really quick while standing and let me know two things: 1. Your Pulse 2. The sum of subtracting your diastolic from your systolic 3. the % of your diastolic in relation to your systolic Example: If your blood pressure reading is 105/70 1. You have a pulse pressure of 35PP 2. You PP is over 34% I want to see how many people have numbers between 0-25. or 0-25%. Also, please state if you were sitting or laying down before doing this exercise. Thank you.
  13. I have not had a TTT. My Neurologist has me doing a version of the poor-man's test every, single morning and the symptoms for me are resoundingly clear: 1. Orthostatic Narrowing of Pulse Pressure (36 (36%) to 15 (15%) upon standing or 102/66 vs 102/87) 2. Orthostatic Diastolic Hypertension (number goes up usually around 20 ex: 66 to 87 upon standing) 3. Orthostatic Tachycardia (This morning: 88 to 117 Upon standing) The only researcher and physician, now retired that really seems to get my exact symptoms is Dr.Bell, who technically put POTS under CFS/CFIDS/ME. Whether that's accurate or not, he's the only one who really talks about ODH and ONPP in concert and its relationship to hypovolemia. I just want to get back to my life.
  14. Hi, Sushii! Yes, basically every morning I can do 20min of moderate yoga! I am finding that the electrolytes and 80-100oz of water are helping with postural tachycardia most days but that my pulse pressure is consistently s***, as well as the raise in diastolic BP upon standing. I have so much trouble finding literature on the subject of this specific combination, especially because I've been hydrating. Today, for example, my BP was 101/83, or 18PP and 18% of the systolic. That's not good...
  15. Hi Everyone, I'm new to the forum. I'm not sure how active it is in 2020 compared to Facebook but I'm giving it a try, as I'm always looking for more support through this journey. I'm currently unmedicated but I have a daily routine that allows me to sort of function sometimes: 1. 7-8hrs of sleep 2. Moderate Yoga for 20min a day 3. 80-100oz of Water, 32oz of which include Liquid IV Right now, I'm simply diagnosed with Orthostatic Intolerance. In fact, my chart just says "Tachycardia" and "Autonomic Nervous System Disease or Syndrome". My biggest concern right now is hypovolemia. No matter how much I drink (with electrolytes,) my pulse pressure has never exceeded 37. In fact, with clear urine and otherwise feeling okay, other than general weakness, my pulse pressure is still only 35. It does help my tachycardia noticeably...most of the time. Often, I've caught my PP being quite low (under 25) even supine. The lowest I've seen is 17, and I've seen it quite a bit. I do also suffer from orthostatic hypertension, although it's mild, where my diastolic upon standing ranges from 81-89. When drinking liquids and electroylytes doesn't raise it to 40, your urine is clear, and you don't want to consume too much excessive salt because of mild orthostatic hypertension, what do you do? Is a blood transfusion ever a solve?
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