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  2. I have many reactions to this post. The price paid for simple pleasures is incredibly unjust. Although, you did get a positive experience out of it, which you appear to be happy with. Most times, we suffer for nothing. The ability to think be able to think like this seems to be a common thread in many people who have eventually recovered from what I have read.
  3. Anybody had these tests done? To prepare for the VNG test, i had to clean out my right ear with debrox drops. I was at home and flushing my ear out. After about the 10th flush with hot water, i got really hot. I lost all of my balance. I was on the ground and couldn't get up and everything was spinning. My wife brought me my BP machine. it was around 170s/100. I layed there for 20 minutes or so and got up and i was fine. a few days later i went to take the VNG test. It was fine until they blew cold/hot air into my ears. The cold air i had no problems with. Then they blew hot air into my r
  4. hi Sarah, Just wanted to let you know that you are not alone with this pattern! I am utterly useless in the morning and throughout most of the day, but (on good days) I have some productive time after 7 pm. My low BP is a real problem for me, and it is especially bad when I first wake up. I wish I had some suggestions for you, but like you, I've tried just about everything so that I am functional during the day without much success. One suggestion - if cortisol was helpful other than its rotten side-effects, can you try very VERY small doses? I have used hydrocortisone cream, which
  5. Yesterday
  6. So happy you got to enjoy yourself! Be well.
  7. Thank you for sharing your wonderful experience!! I’m so glad you were able to do this! Just reading your experience made me feel alive! I could just picture your wonderful day!!! 😃🐴🐎
  8. For the past years I have had one big wish: to ride a horse again. I grew up riding but since onset of POTS 11 years ago I have not been able to. Most of being around horses is done standing, so even just getting ready would throw me into a tail spin. Well, Saturday was a beautiful fall day, I had just had my IV fluids the day before and I felt strong, well and - reckless! So my daughter and I drove to her stable in VA ( she does show jumping there ) and while she readied my horse I sat waiting. Riding is actually a POTS-friendly exercise IMO, since you sit and other than using your leg
  9. Hello @FaintingUnicorn - and welcome to this forum! --- I was seen by Vandy 10 years ago and back then my referral went relatively quick ( and of course we had no COVID ..). But I find 5 months waiting without calls to you or your cardiologist being returned unusual and personally would keep trying to find out what is going on. There should be a referral specialist that could answer your question regarding the status of your referral. It is not unreasonable after this time to ask about the status, so if you get a rude or impatient response it is on them. They should have a general idea
  10. Last week
  11. Hi friends, I know - kind of a lame first post, right? I promise I will come back and write more about my journey so far, and I will have lots of more interesting questions at that point, but... Right now I'm just stumped. My referral has been sitting at Vanderbilt for about five months, and I have received zero contact. Is that normal? First, I know I must be patient. I have no desire to jump ahead of the queue or pester anyone. I'm very much willing to be patient for something I know will be beneficial. And yes, Covid is wreaking havoc with doctor's offices all over the globe. So
  12. G'day folks, For the past 15 years, I've dysautonomia symptoms that come and go at the same time every single day. It starts soon after I wake up, runs for a certain time, then wears off. The next day, same again, seemingly independent of any other factor in my life – sleep quality, wake-up time, weather, stress, trauma, diet, activity levels previous day, etc. etc. At first, it only lasted an hour or so, and didn't really bother me. (I actually thought it was morning dehydration related to some bowel surgery, so I wasn't worried at all.) But as the years passed, it gradually extende
  13. Lying on my right side, I've noticed this, though it only goes up about 10 bpm. In fact, last night, I woke up twice with palpitations, both times lying on my right side.
  14. @Delta - rainstorms actually have a severe effect on my POTS, even without the hail. Barometric pressure changes cause this phenomenon, I get the Fight-or-Flight response as soon as the sky starts to darken and the leaves on the tress turn to another direction ( sign of imminent rain or wind ). @KiminOrlando so sorry! I know the commercial and sympathize with the urge to cry 😭 -- I am a known cry-baby and whenever I watch a movie that makes me cry I start feeling like I am having a heart attack! And even happy feelings set me off. And woe to the one that gives me a scare - I cannot calm
  15. I asked my PCP to fill out paperwork for me months ago and they said they dont do that yet they did it for my wife. They didnt believe i was sick as i said i was basically. I ended up leaving because the the whole clinic was not good. Never callling in prescriptions, rude staff etc and it was far away plus they didnt support me. I didnt bother asking my new PCP to fill it out because he has no clue what i go through really. The cardiologist who referred me to my dysautonomia specialist half way understood my condition. He filled out only half of the RFC form. So i asked my dysauton
  16. Private message me and we can talk further. Ever since ive been on the beta blocker called coreg, i no longer experience this 99 percent of the time. This problem has now been solved for me.
  17. @Derek1987 I have this everyday too. I did a Google search of this leading me to this thread. Would you mind sending me an email if I can share my email with you? I never met anyone else that this happened to. I notice the rest of the thread is from 2004 and many of the users are no longer active.
  18. The "D" in front of the "NP" means she has her doctorate in nursing, and the "C" after "FNP" means she is a *certified* family nurse practitioner. The "C" is the same credential as in "CNP" - certified. I've never been through this process but, honestly, I can't imagine that either an NP or an CNP would not be considered a qualified medical professional, as they are permitted to not only diagnose conditions, but also to write prescriptions, including for controlled substances. I also can't imagine that you would be the first person to have asked your practitioner to fill out such a form, and
  19. My daily routine is wake up and use the restroom/brush teeth. Fix something to quick to eat in the microwave. Take medication. Eat in bed. Stay in bed. I take the trash out once a day. I dont watch much tv. Im usually just browsing on the phone. I get up for bathroom needs. I take the litter out once a week which is like taking a trash bag out. But its heavier and leaves me breathing as if a normal person just did 75 jumping jacks. I hate doing that task. But on a typical day i really do nothing. Sometimes i might play video games for about 45 mins. But thats not every single day.
  20. I realize this question was asked 10 years ago, but thought I should share my insight still: To answer your question: Yes, gas can trigger the vagus nerve! There's actually a condition called Gastrocardiac syndrome (also known as Roemheld syndrome) in which gas in the stomach or intestines may put pressure on the vagus nerve (as well as the diaphragm and/or heart). There's a lot of literature on this in German, and in recent years more has been translated into English (including the original works of Dr. Roemheld, whom first described this syndrome). Treatme
  21. @Derek1987 Is she an NP or a CNP? It may make a difference. I found this on line . . . NP (Nurse Practitioner)An NP is an RN who has completed either a master’s or doctoral degree program, plus clinical training. NPs provide a full range of primary, acute, and specialty care services with an emphasis on the health and wellbeing of the whole person. NPs can practice autonomously in many states, but some still require the oversight of a physician.CNP (Certified Nurse Practitioner)A CNP is an RN who has additional education and training in a specialty area, such as family practice or p
  22. Mine works the other way too though. You know those sappy coffee commercials where the young man surprises his parents by coming home from the military very early Christmas morning and he wakes everyone up by making coffee? They come down stairs to the smell of good coffee and their son. I cry every time. I'm starting to cry typing this. MAKE IT STOP.
  23. Read the fine print. I don't think Nurse Practitioners count as qualified medical professionals. Mine didn't but maybe they changed the rule. I really hope they changed that rule.
  24. I have had similar occurrences; they have calmed down (knock wood, hard and loud!!) since being diagnosed with POTS and prescribed the beta blocker. One instance that I recall in particular is when we had a thunder storm that led to hail falling. The sound of the hail falling on the roof (our house is one story) startled me so much that my heart rate went way up. A few days later, we had more storms coming in and the weather people on TV were saying that more hail was coming with it. So would you believe, I actually got in my car and drove into town and went into one of those convenience-type
  25. Oh yes, I passed out several times as a teenager and then learnt to recognise the warning signs that I was about to faint so well that I never actually fainted again. When my ears started to ring and my vision to grey out at the sides I would sit down regardless of where I was (in the middle of my own high-school graduation ceremony was probably the most embarassing!) It didn't really happen that often or affect the rest of my life, it was just a little quirky thing of mine that I struggled to stand in the heat or when I had my period. I then got mono/glandular fever and this little quirky t
  26. I think it should definitely help. It’s an independent, medical assessment of what you are capable of doing. I am 100% certain my form was similar and I was approved first try. From what I know the judges put a lot of credence in the medical records and assessment. I assume that you saw this? https://vimeo.com/434576980
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