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About BuffRockChick

  1. Is this POTS?

    Sounds good! Having POTS is a whole lot better than having a structural defect of your heart (in my opinion!)
  2. How to stay positive

    Do you have a problem with negative thought processes? Thought processes can be changed. But emotions? Well, you feel whatever it is that you're feeling. And if he's going to refuse to accept you because you're having emotions about being in a difficult situation, then... I think a better question is how to get out of an emotionally abusive relationship? Have you applied for social security disability? Is there any kind of work you could do even part time or working from home? Do you have access to therapy? You area dealing with so much here, it's complicated. I don't think your relationship is the problem, but your current financial dependence on him.
  3. Is this POTS?

    It looks suspicious for POTS, but you need a tilt table test done for diagnosis. HAve you seen a cardiologist?
  4. Good Days and Bad

    Before dx and tx, a bad day was bedbound except bathroom trips, and nausea prevented me from eating. I'd lose weight fast. A good day was maybe 80% functional, still average 4 hours in bed between 8 a.m. - 5 p.m. (I use time spent in bed during the day to track how functional I am / am not) After dx/tx, I still get bad days if I'm not diligent about sodium/fluid intake. Yesterday was one of those. I was in bed 5.75 hours between 8 - 5. I was cognitively impaired, reduced emotional control, irritable, tachy when upright, fatigued, and generally just miserable. A good day, I'm 100% functional. I think? I mean, I've never been functional before in my adult life so I'm not exactly sure. I haven't been struggling with showering/bathing or household chores. I don't know if I could keep a job, I'm just trying to catch up on a decade of not being able to take care of myself and responsibilities before I worry about working again.
  5. Constipation not responding + bloating, nausea

    I had wicked constipation on seroquel.
  6. Scary Table Tilt Test

    I'm sorry Kalamazoo! That is miserable! My BP numbers are similar. TTT HR 179, BP was 178/87 after 1 minute, diastolic peaked at 91 at the second minute. It stabilized in the 140/80 range, which is more normal for me when standing, but then I run low like 95 - 100/60-65 most the time. My blood pooling is nowhere near as bad as yours though. My cardiologist said not to worry about the blood pressure that it's reactionary/secondary. IDK, pretty hard not to worry about numbers so high! He started me on florinef and it's surprisingly awesome. Really got lucky there!
  7. Hi! New! - updated, got POTS dx!

    I hope this one is a final update. I'm on florinef 0.1 mg and my symptoms are all controlled. I am struggling with low appetite though. I am ecstatic, having some identity crisis. Very emtional, and happy tears. I have been able to shower, unload the dishwasher, put my toddler to bed. Little thing that seem insignificant, but I've never been able to do without distress and fatigue.
  8. If it's no longer POTS, what is it?

    People DO put salt in coffee! It's supposed to make coffee less bitter. Does he have difficulty eating much at one time? Could his stomach be slow to empty? Do other liquids go down faster/easier? Sometimes when I feel to full to drink water I can drink broth or hot cocoa easily.
  9. If it's no longer POTS, what is it?

    Hey FinnMinn! Glad to see you again! I thought of you and your hubby yesterday. I had tilt test yesterday and my blood pressure went from 120/? (A bit high for me, I was kinda nervous) to 178/98 in the first minute and stayed high. &$*% Thought of your hubby right away when I saw the raw vitals from the test! How much salt did he have at a time with how much water? Asking because if there's not enough water, the body will draw water into the stomach to dilute the salt, temporary causing hypovolemia. And vomiting and stuff. IDK if I said that before. My husband explained it, it was new to me. I'm having a buffered salt pill (Salt Sticks) with 215 mg sodium for each 8 oz glass of water I drink. My cardiologist says 12 - 8oz glasses per day. (I think that is 3 liters). I just started Florinef too. 0.1 mg. So far it seems miraculous! Not sure if it's just the medication or also because I had a bag of saline yesterday too.
  10. Hi! New! - updated, got POTS dx!

    Tilt table test done. Diagnosed with POTS. My HR went up 93bpm in the first minute! My blood pressure went up to 178/87 in the first minute! Stayed tachy and hypertensive the whole time. Violent tremors, legs gave out. Didn't faint, they stopped the test after 13 minutes. I was slow to recover, tremor for about half hour, couldn't walk for about an hour.
  11. thoughts on what to tell people about pots

    Your mom is a different case. You can't fight emotion with logic. A person who is well is won't understand what it's like to be chronically ill. Try something like "Mom, I appreciate that you're trying to help, but I don't feel helped when people tell me how to get better. I feel loved and supported when .....". <-- this is pretty slick, boundary setting, communicating with an "I feel" statement. An acquaintance? If I'm feeling open I'll say "I have a disorder of the autonomic nervous system so my body can't regulate my heart rate and blood pressure when I'm standing". I have that sentence memorized and rolls off my tongue easy now.
  12. Accommodations at college?

    Seating preference is easy accommodation that helps. Depending on her courseload, not standing may need to be specified. I had a chem lab that was standing - I couldn't function, had to withdraw. I had an art class and couldn't stand at an easel. Instructor was flexible to let me sit on the floor, but I will get it in writing as an accommodation next time I enroll. I'm also going to request separate testing room so that I can lie down for tests. Check if any of her classes have food/drink restrictions too. What about for dorm life though? Can she shower? Does she need a shower chair?
  13. Gardening!

    I haven't been in our veggie garden for weeks. Hubby reports it is doing poorly. We are swamped with blueberries. If I'm well enough to stand I'm picking or canning blueberries.
  14. Please don't judge need advice

    200 mg caffeine in the morning, taken in a pill, does not increase my 24 hour average resting heart rate as calculated by Fitbit. It decreases my orthostatic tachycardia. I still have blood pooling, but more gradual onset, with standing/walking/shopping. When I am on my feet with errands etc, I often have additional 100 - 200 mg of caffeine in the afternoon for more boost - but that will interfere with my sleep. When I was in college and had to function in the morning I was taking 600 mg in the morning. That was before I was aware of POTS, had no idea I ever have tachycardia. I had some anxiety about 8 hours after a 600 mg dose though, so even if more caffeine = less POTS symptoms, the higher dose isn't worth it to me.
  15. Newbie-Frustrated

    I wonder if you experience postprandial hypotension? I get it sometimes, I can't figure out a pattern to it. I get hypotension when I take a bath, so eating + hot water + upright position makes sense for provoking misery. Good luck with your TTT!