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Everything posted by bunny

  1. I forget which national brand-name my home mattress is, but it was the softest non-pillowtop I could buy. I wanted to be able to flip/rotate the mattress for better wear. I then added a 3" gel topper from Costco. I've tried elevating the head of my bed by using wood blocks a few times over the years, but couldn't get used to the feeling and couldn't fall asleep with it that way. Likewise, I've had adjustable beds in some of the hotel rooms I've stayed in and almost-lay-flat seats on aircraft and also ran into similar issues with not being able to fall asleep with them.
  2. This is so me... I try to schedule it so that I'm able to lay down afterwards. I often feel like I've just gone through an entire exercise session. I do find that the squatty potty helps with how much 'effort' it takes, but I still find myself exhausted afterwards.
  3. I've been through quite a bit of ugly things in my life, including plenty of health problems. Dysautonomia's a breeze compared to what I've been through. I wasn't supposed to make it to be 19, then 20, 25, 30, etc. No way I'd ever see 40, so we deferred a lot of health issues figuring I wasn't going to be around long enough for it to matter. Well, I made it... so now I'm having to catch up on all of the 'deferred maintenance.' I started working when I was 12, worked 60-100 hours/week throughout high school, and continued into my adult life that way. If I wasn't in a hospital bed, I wa
  4. Barometric pressure doesn't affect me at all, BUT high humidity absolutely kills me. Even indoors, high humidity affects me. I'll actually do worse inside a building where the AC is dying and it's cool/damp than outside in the Florida heat. Dehumidifiers are my friend. My body temperature tends to run on the low side and I go into hypothermia very easily, so places with freezing temperatures don't agree with me either. I got sent to Alaska for work a few years back during summer and wrapped up right when the termination dust (first snowfall in the mountains) hit. It was unbelievable
  5. It's mid-February as I'm writing this, but as of now, sitting in Florida, USA, I'm ABSOLUTELY NOT worried. In fact, I'm planning on going to Disney this weekend, no worries at all. Would I be traveling to China right now? No. Asia? Depends. US/Europe/Oz? Sure. Let's first do a little background on security. First, two definitions: 1) Threat -- a person or thing that can cause damage or danger. ex: a tornado hitting your house. 2) Risk -- the probability that something undesirable will happen. ex: You see thunderstorms in the area and tornadoes were reported from
  6. 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.
  7. 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.
  8. 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,
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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 jui
  16. 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 colo
  17. @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.
  18. 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 &a
  19. 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 f
  20. Fun facts: 1) There is no "safe" level of ionizing radiation (x-ray,CT). Every single x-ray and CT scan all adds to your risk of cancer and other nasty things. 2) Ionizing radiation damage is cumulative. 3) In the USA, no doctor is responsible for the cumulative x-ray dose a patient receives. This is different in other countries where the radiologist is required to look up a patient's past history before proceeding. Back in the day at a med school lecture, I remember a radiologist giving a talk about ionizing radiation (x-ray, CT) safety. His talk came from his own p
  21. I wish I had such an option - I have a girlfriend but we aren't married yet so there won't be any of that going on until then. I often travel for work and have become spoiled by the seemingly endless supply of steaming hot water at hotels, so I duplicated it at home. I believe I have about 30 minutes' worth of hot water at home before it starts to cool off. The Speakman Anystream showerheads are pure bliss. I can't handle high humidity, no matter the temperature. I've been in buildings with failing aircons that were so humid that I had to go outside. I never considered mysel
  22. My normal is about 35.5C, and it's also where I feel the best. Have you had any thyroid tests performed?
  23. They used magnesium citrate with me, half the regular dosage. It wasn't pleasant but I made it. Given what happened with you and that you've already had two prior colonoscopies, I would be asking if a 3rd was absolutely necessary and what they think they'll find this time that they couldn't find the past 2 times. I don't know your medical history, but sometimes it does help to call a time out and reevaluate the strategy.
  24. Awww... I can sympathize. I love a long hot bath or long steamy shower, but my body does not! I was blessed with a major hotel room upgrade last week (cheapest room booked, upgraded to a 2 bedroom, 2 bath with kitchen suite that had a giant whirlpool tub). It's probably the first bath I've taken in ~2-3 years. It was heavenly, BUT, I also was starting to feel iffy and immediately started running cold water. The recovery wasn't too bad this time from it. Like @toomanyproblems, a space heater in the bathroom is an essential for me, even in the summertime. My normal body tempera
  25. @Pistol: Thanks for that info. I've had tremors over the years but have a family history of Parkinson's, so I always blamed it on that and figured I'd deal with it later. Now I have something possibly less sinister to blame it on.
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