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About bunny

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    Advanced Member

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  • Location
    Florida, New York
  • Interests
    People, music, photography, medicine, Christianity

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  1. I've had some form of tinnitus for as long as I can remember. In my childhood it was an occasional high-pitch ringing and I'd get the pulsatile whooshing at times, usually when I'm not feeling well. A few years back after taking vancomycin, the ringing became worse and constant in both ears, with my right ear being worse. I now have the constant sound of a jet engine whine in that ear. I still get the pulsatile when I'm not feeling good.
  2. Just because someone of authority puts a form in front of you doesn't mean you need to sign/agree to it. Even at that, feel free to cross out and modify anything you disagree with. In the USA, binding arbitration (taking away your rights to use the court system) is gaining traction, even at medical practices. More than once I've refused to fill out the form and had no repercussions from it. If anything, the one interaction led to an interesting discussion with the front-office staff who never really thought about it before.
  3. My body seems overly sensitive to meds as well. With many meds, I'll start vomiting within the first hour of taking them. They even did blind/placebo trials with me, even tried hiding meds in food, and I only reacted to the live drugs, so it certainly wasn't something psychological with me. When it came to the cardiac/BP meds, I either threw up or my body would try to overcompensate to bring things back to where it though they should be. As far as my body's concerned, it thinks it's doing the right thing. Ultimately, we stopped all of the meds. My body may be doing the wrong things, but I feel better and am more functional without them.
  4. I can go from ~120bpm to ~60bpm in a matter of a couple of beats, BUT, that's usually after exercise. My body doesn't transition from active to idle gracefully. Digestion can do the reverse to me, although it usually ramps up over a period of 10-20 seconds when that kicks in.
  5. When I lay flat, there's a good 2-2.5" between my neck and whatever I'm laying on, with only the occiput of my head & shoulders carrying weight. If I'm propped up a bit, I do feel more comfortable, although I'll always flip over to one side, even if just reclining.
  6. I wish I had a non-existent one. The roof of my mouth, especially towards the back, around the upper rear teeth, and anything prodding around the base of my tongue will cause a very strong gag reflex in me. Had a lot of fun a the Dentist's office this year that's reminded me just how strongly mine works.
  7. I get this as well, usually when I'm not feeling too good. My vision tends to darken more with the pulse wave than anything else. When it gets to this point, I'm pretty close to the point where I'm looking for a flat surface to lay down on before my body does it for me.
  8. I'm just curious if anyone else gets dizzy if they lay flat on their back? I know dentist chairs in certain positions will get me very dizzy and DEXA scans can as well when they won't let me use a pillow. I have both a Dental appointment and DEXA scan next week which reminded me of this topic. Likewise, I normally sleep on my side as it just doesn't feel comfortable for me to be on my back.
  9. I've never heard this... I remember when I first was dx'd with NCS/POTS and many other little things, my cardiologist was pushing hard for a pacemaker/implantable defib. And I do mean, pushing HARD, like needs to be done immediately or YOU WILL DIE!!!! I've coded before for other non-dysautonomia reasons, and I certainly was in much better health than then. After doing some research and writing to the researchers of published articles, the one responded something along the lines of, "While passing out and temporary asystole are visually alarming, we've never actually had a patient die from this." He did say that some of the co-morbidities might have negative effects, but I wasn't going to drop dead from POTS. It was a marked difference from what my own cardiologist was pushing. I skipped the pacemaker/defib surgery. That was 20 years ago. I'm still here. That would have been at least 4 surgeries I've avoided. (1 for the original pacemaker + 3 replacement pacemakers/batteries) Still very happy with that decision and thankful for the research Dr's advice.
  10. The big question is, "Does it matter?" What are you hoping to gain with/without having an abnormality? What are the consequences of treating it? What are the consequences of ignoring it? Even if you manage to get an official diagnosis of something, are you any further ahead? Trust me, the number of disappointing Dr appointments way outnumbers the positive ones for me. My body was trashed 20+ years ago due to severe anorexia. Nothing about it really works right. Diagnoses and labels can be helpful, but they can also get in the way. I stopped worrying about them many years ago. Validation is nice, but I only bother with it when it's going to pose a threat to my health. Case in point: Last week with an oral surgery consult. Bradycardia & hypotension are on the typed, multi-page medical history sheet I hand over to every new Dr I see. I'm already apprehensive of doing surgery, have a long history of bad experiences with doctors, have a past history of abuse (and saw a dental chair with restraints on it as they sat me in the consult exam room).. you bet my BP and pulse were through the roof. The nurse wasn't buying the bradycardia & hypotension until I show her my BP reading from that morning -- 83/39, p45. Yep, that took general anesthesia & sedation right off the table. Otherwise, I would have just brushed her off. I pass out (among other issues). No big deal. It happens. It's part of "normal" life for me. It's not too different from someone who has epilepsy, or someone who is an amputee. To the world, their bodies aren't "normal", but that doesn't change their situation. They've been dealt the cards they have. It's up to them to make the most of it. Sometimes problems are easily fixable. Sometimes the treatments put you in worse shape and can cause permanent damage to your body. Sometimes doing nothing really is the best approach.
  11. For me it hasn't been as important as to what I'm drinking as much as that I keep drinking regularly. I can handle a soda or sugary drink, but only one at a time. Instead, I normally (try) to go for tea or water. What has been helpful are the Ozark Trail tumblers (knock-off Yeti) I picked up at Walmart. I'm much happier drinking ice cold water and these will keep it cold with ice for 24+ hours. With one of those full and nearby, I'm constantly reaching for it and drinking water. One luxury I do enjoy is squeezing my own orange juice. There's no comparison between real orange juice and the artificially perfumed junk they sell in the stores. Not even close. Not even the same color, taste, or smell. At least where I'm at, it's also cheaper to make the real thing too.
  12. Don't be afraid to fire your doctors. As unpleasant and scary POTS / dysautonomia can be, it's not fatal. There *ARE* good doctors out there. If I did everything the doctors wanted me to do over the years, I would have: 1) An implanted defib. The Dr tried to pressure me into this, saying I'd "DIE without doing this immediately!" That was 20+ years ago. I'm not dead yet. 2) An implanted pacemaker. 3) At least 3 surgeries to replace the dead batteries in the pacemaker 4) Had my small intestine removed 5) Had my large intestine removed 6) Have a colostomy bag 7) Be unable to work due to how the meds made me feel 8 ) Be in a wheelchair 9) Be dead. I've had doctors' treatment plans cause me to code while I was in the hospital. I told the Dr in advance I thought this was a bad idea, he insisted it was the standard protocol.... I coded about 18 hours later. I have a copy of the 2-lead ECG where I flat-lined framed. I've done none of these things and my current quality of life is infinitely better than it would have been with any of aforementioned things. Sure, I'm symptomatic at times, but it's still a heck of a lot more enjoyable. Doctors, like politicians, don't have to live with and often don't think of the unintended consequences of their actions. Kind, well-meaning doctors aren't always right. Even esteemed experts in the field can be wrong (My #9 above was supposed to be one of the top 5 Drs in his field in the USA...) Some of the best Drs I've had over the years weren't experts, but they could think logically and cared enough to read through the literature to come up with solutions. I had a GP who was superior in knowledge to specialists. YOU are the only one who knows how you feel and you're the one who has to live with these medical decisions. If need be, take a friend with you for support and to help you speak up and advocate for you. It's YOUR body, YOUR decision.
  13. @StayAtHomeMom: That would definitely explain it. Bread does a number on my mother as well. She doesn't have celiac; instead it's simply the gut bacteria she currently has.
  14. I'm usually rough when I first wake up (very low BP/pulse). Once my BP starts to rise, I'm able to get out of bed and function. I usually try to do light meals during the daytime and save my main meal for dinner, as a heavy meal will absolutely exhaust me in ~30-60 minutes after eating. As the day goes on and I get more tired, I become more symptomatic. Sometimes by the time I get back home/to the hotel from work, I'm looking for the nearest horizontal surface to lie down on. At that point even the floor looks good. If I pace myself throughout the day, taking little breaks here & there, I'm able to last the full day. If I'm going the full time, I run out of steam mid-afternoon. I've also sometimes been able to stave off an energy lull by walking for a bit, BUT I have to catch it early, otherwise this becomes the exact opposite of what I should be doing and I quickly go downhill.
  15. Gastrointestinal bloating is caused by the fermentation of bacteria in the gut. The human body is incapable of producing gas in the gut...but the bacteria within can be quite prolific with it, especially if you get an imbalance. Such imbalances can be caused by illnesses (flu & such), bowel preps for colonoscopies, stress, antibiotics, travel, food poisoning, etc. I'm willing to bet if you think about it, you can probably narrow down what might have caused this to happen. The key to fixing it is figuring out which foods the gassy bacteria are most attracted to and avoiding them for a bit. As StayAtHomeMom suggested, probiotics can be helpful. Gas relief meds can help as well. Any "real" food (ie: not processed, doesn't come in a box) like fresh veg, unprocessed meats, soft (real) cheese, fermented foods, are all good places for this. Your um..gas.. might be able to tell you what's wrong. If it's sulfur-y, cut back on the meats. If it's not, cut back on the sugars, carbs, and fruits. Sometimes more extreme means are needed to straighten things out.
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