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Everything posted by BuffRockChick

  1. I'm in WI too. The weather changes are hard! The faster the weather change, the more likely I am to have symptoms. Humidity is tough to adjust to! I agree with Pistol - don't lay around. Move as much as you can, even if all you can do is bed exercise.
  2. I don't have raynaud's, but I get chilblains. I am struggling with painful cold hands. Seems like there's no help for us! Doctor says exercise, and I do, but it doesn't help my cold hands. The other common treatments cause vasodilation and that's a no-no for POTS.
  3. Hi @Mainer re: diet, very low carb, like ketogenic diet eliminates my fatigue and low blood pressure after eating. Fasting helps me too. I feel best 6 - 20 hours after eating. I am finding that drinking to thirst only has been helping me more than pushing salt and fluids. But it's winter still here, and I don't sweat when I workout, so YMMV, and I might change my tune in summer. I've gone from bedrest/disabled to fairly functional. The best exercise for me was simply standing up. (I'm not a fainter.) Last week was my son's spring break. He has a lot of behavior problems and has to be supervised constantly, so I spent a lot of time sitting and watching him. He's back in school today and I'm shocked how much functioning I lost from one week of sitting a lot! You don't have to "workout" or sweat to fight POTS. Just keep moving!
  4. I had high testosterone when I was on a medication that increased my insulin. (I'm not diabetic, it was a psych med). Elevated insulin is a significant factor in high blood pressure. I would start investigating insulin to see if there's anything that fits what you're experiencing.
  5. It helped me function, but the side effects were horrible. I got the hypertalkative side effect - very annoying!! I lost 40# in 6 weeks, was literally starving to death and that made my POTS worse and I was falling a lot more than usual. Also had disturbed sleep side effects. I coudln't tolerate it. Midodrine had similar benefits for me without the nasty side effects.
  6. When I started florinef, I tracked my daily sodium and fluid intake. I was able to see that florinef had no effect at all if I didn't get a minimum of 4 grams of sodium in a day. Over 4 grams of sodium, I got beautiful symptom relief. However, I needed an additional medication (midodrine) to help with blood pooling too.
  7. More updates! I had fluctuation of symptoms. Added midodrine which controls blood pooling better. I started exercising and learned about ANS hacking and tried a corset for abdominal compression. I did exercise as "movement" and focused on spending more time standing each day until I got to 7 hours standing! There are things we can try to hack our ANS for better functioning. Meditation down-regulates adrenals and stimulates the parasympathetic (rest and digest) system. Laughter hacks the ANS too. Time in nature stimulates the parasympathetic. Sunlight stimulates the pineal gland. Etc. I also switched to a ketogenic diet which solved my GI symptoms. My gassy, bloaty, belchy, achey, gurgley belly is calm and quiet now, and my decade of chronic constipation is over. As long as I don't cheat and eat off-plan, I don't get postprandial hypotension and fatigue after eating. I am now off medications. I still have orthostatic tachycardia, but it doesn't bother me. Because my resting heart rate is so low, "tachy" starts at 84 bpm for me. I'm usually around 105 bpm while standing now. If I don't get stressed out, I don't get additional symptoms. But when I get stressed out, I get POTSy all over again until I can hack my ANS and get calmed down. It's still winter here, so I'm not dealing with heat or bright sunshine yet. I know I can acclimate to heat, but fast temperature changes provoke symptoms. I don't have a plan for coping with direct sunlight. I am excited for spring. In the past, I've had a crisis every year in spring. I believe these were from temperature changes provoking POTS symptoms. I'm excited to see how well (or not) I adapt through spring and see if I can survive the season without a flare. I think my POTS is part genetic predisposition and part central nervous system sensitization. My POTS started during a period of intense stress. Flares coincided with bad jobs, bad situations. Remissions coincided with periods of lower stress. I think this is why ANS hacking has been so beneficial for me. I am curious to see what unfolds in the future and find out if my suspicions are correct or not.
  8. I have been officially disabled since 2010, and now i live off my financially secure husband. 😘 I had worked as a dog groomer, but was not able to sustain working 8 hours per week (standing), or running my own salon where I could sit all the time. Now that i've fainted i can't groom dogs anymore. If I fainted with a dog on the grooming table, and the dog jumped off, it would be hanged to death. I groom 4 dogs of friends at home, little dogs that will stand nicely on the floor and I sit on the floor with them. It's enough I don't feel completely useless. If I could manage travel and standing I have credentials to teach people to groom, but I've never been able to figure that out. I want to write some books, but I'm either doing housework/kid stuff or in bed with brain fog so I can't manage writing. I have artistic ability, but same applies there and I've done nothing. i could make a good living off my art if I could manage symptoms and everyday life at the same time. Sorry, I don't have a happy answer. It's hard. But you need a work history if you might apply for disability in the future, so go for it, do your best. Don't get student loans.
  9. The 30 bpm increase is on a tilt test. It makes a difference. I was anxious the week before because my poor man's tests at home weren't all over 30. i was having a good week. hah! They tilted me to 80 degrees and my HR shot up 99 bpm in the first minute. Tilt test is a whole different ballgame!
  10. What can you do? Track your symptoms diligently and use google. google scholar is great! I had orthostatic vitals checked once a few years ago and it was missed! I discovered POTS while reading only about every possible reason for fatigue (hint: hundreds of them). I stood up, checked my pulse, and the rest is history! i had to advocate strongly for myself because I'd been misdiagnosed so many times with psychiatric conditions. it was worth the hassle.
  11. I had a recent surgery and felt FANTASTIC afterwards. I woke up from anesthetic feeling great, but after about 10 minutes the pain kicked in and it took them a while to get it under control. I couldn't walk unassisted at the hospital, but by the time I felt incredible. I suspect i felt so good because I had 4 liters of IV saline. I felt terrible the next day with normal post-op pain and POTS got worse through the next 2 weeks from deconditioning since I wasn't able to return to normal activity right away.
  12. Sounds good! Having POTS is a whole lot better than having a structural defect of your heart (in my opinion!)
  13. 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.
  14. It looks suspicious for POTS, but you need a tilt table test done for diagnosis. HAve you seen a cardiologist?
  15. 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.
  16. 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!
  17. 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.
  18. 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.
  19. 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, from what I understand, 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.
  20. 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.
  21. 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.
  22. 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?
  23. 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.
  24. 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.
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