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Everything posted by vepa

  1. I have a trained SD through a private trainer. When she was a puppy and learning to alert, the trainer explained that she's not necessarily in tune with my heart rate or blood pressure directly, but rather that she can sense subtle body language changes before I do. So the trick to it is just getting her to notice whatever I am not aware that I am doing. We did that by giving her treats as soon as I did notice symptoms, and eventually she would connect the more subtle things with "I'm about to get a treat" and run over.
  2. I've heard this too. The way it was explained to me was that POTS often has a big component of low blood pressure, hence the salt as a main treatment. And as people age they tend to get higher blood pressure. So for some POTsies it can even things out. Certainly not the case for everyone, but not impossible or even implausible for some. I don't think there's any harm in saying it's possible, so long as the symptoms you have now are still being treated and taken seriously and research is not halted. I certainly know people who, when I describe POTS, will say something along the lines of "
  3. I don't know how you do with caffeine, but for me coffee helps a lot. It's a vasoconstrictor, so it helps with blood flow and dizziness, plus it helps me clear the brain fog. My office knows me as the girl who lives on a steady stream of alternating between caffeine and Gatorade lol.
  4. Exercise. I know that sounds like a nightmare during a flare. But deconditioning will make things worse and worse. It's a cruel cycle. So even if all you can manage to do is walk for a few minutes each day, that's where you start. When I flare, my instinct is to become glued to my bed or couch. But when I force myself to keep my body as active as I can, it shortens and eases flare symptoms.
  5. I get something similar in the shower, if I tilt my head so that the water pressure hits at a certain angle, I get very, very dizzy. I brought it up with a doctor once but didn't get any explanation.
  6. Cool water. I find that hot water in my shower makes me WAY more symptomatic, because it raises heart rates and lowers blood pressure even in normal people. So for me, it wreaks havoc.
  7. Tbh, my friends tend to ignore me too. But they do it because they know I would prefer no scene be made. Passing out is embarrassing enough as it is, I don't want everyone making a big deal out of it and making me feel worse. If I were to not wake up, or wake up and appear injured, I'm sure they would help. But otherwise, I prefer everyone just leave it alone.
  8. I buy pedialyte powder packets and mix one into every single bottle of water I drink. If it's not pedialyte, it's a mixture of half Gatorade, half water, and a little added salt. For me, it means the electrolytes don't just relieve symptoms, but can also work to prevent them. Plain water makes things a lot worse for me, because my body doesn't retain it and it flushes out my electrolytes rather quickly. There's a lot of electrolyte options, and I've heard really good things about the banana bag oral solutions. I just prefer the convenience of simpler things like pedialyte or Gatorade tha
  9. I've never been tested for EDS. I've suspected it due to somewhat vague symptoms like bruising super easily, joint pain, and my hips dislocating and then popping back in randomly, but don't have any hypermobility at all so the doctors won't even consider it. Were her cervical instabilities diagnosed by a neurologist? I currently have a GP, a cardio, and an endo, but I really think neuro would be a lot more helpful for me. Maybe I can use this episode to get my doctor to finally give me the referral. Feeling like I've been hit by a truck is a very accurate description. I definite
  10. The other night, I had a really scary episode. All of my muscles started intensely cramping up. I was shaking and in a lot of pain and could not get my muscles to relax. I couldn't stand or really control my body much. My friend put my pulse ox on me and my heart rate was 140+ while I was lying down. My BP was also high (130/90) and it's previously always been low. This lasted for a couple hours before it finally died down. I called the doctor the next morning and he said if it happens again to go into the ER but had no other answers for me. Has anyone else experienced this?
  11. I think it's useful if you have abnormal heart rhythms or reason to think you're at risk for scary arrhythmias, like long qt syndrome. But for just basic POTS and tachycardia or bradycardia, a pulse ox is cheaper and just as useful.
  12. Professors and department heads and med students alike can all tell you that salt from a salt tab is still just salt. Salt tabs are recommended as another way to increase intake, but they do not provide any additional special benefits. If salt tabs are making you nauseous, taking in the same amount of salt via alternate methods should be just as beneficial.
  13. Take a nap prior! Often symptoms are worst in the morning because you've been lying down for a long period of time and your body forgets how to adjust to the upright position. As the day progresses and you are more active, your body adjusts. This can be simulated by relaxing and lying down for a couple hours prior to the test.
  14. I can't do them. I tried after my cardiologist recommended them, but large amounts salt is an emetic and taking that much of it instantly and compressed into a tiny tab means nausea and vomiting is very likely. When I was trying to power through, I would drink an entire bottle of water, take the salt tab, and then drink another bottle immediately after. It helped, but did not solve the problem and drinking that much water that quickly can make you feel gross all on it's own. Honestly, they don't have anything that you can't get in a standard electrolyte drink. Banana bag oral solutions have th
  15. Possibly something a neurologist could help you with? It doesn't sound like POTS, nor really indicative of any sort of dysautonomia, so I'm not sure people on this website will be able to provide much insight.
  16. I think this is a very common thing. My heart rate always settles down as the day progressses. It could also be that mornings are just more stressful. You have things to do and you have to get up! Whereas in the evening you're done for the day and can relax.
  17. I consider flares to just be normal symptoms, except worsened. For example, I almost always get extremely dizzy and my vision blacks out completely when I get out of bed first thing in the morning. This is normally my worst moment of the day, and the rest of the day symptoms still happen, but maybe my vision stays mostly intact or sometimes I stand up and feel nothing. But a few days prior to my period, my symptoms "flare" and I get the same level of dizziness and no vision every single time I stand up. I also get that feeling of walking on a slant. I also get moments of feeling like the w
  18. I'd personally feel that the health risks of smoking outweigh any symptom relief. I guess vaping may be safer, but I think caffeine and nicotine have incredibly similar effects when it comes to vasoconstriction, and I would choose caffeine as the safer option. I know a lot of people use caffeine pills as a treatment option, and I personally find that adding an afternoon cup of coffee to my day minimizes my lightheadedness and dizziness quite well. It does raise your heart rate, which makes some people feel worse, but so does nicotine. Nicotine also gives you a much higher risk of blood clots a
  19. I received a similar suggestion, except I was already seeing a therapist at the time the doctor suggested it, so I calmly explained that my therapist was the one who thought I was dealing with something medical instead of mental and suggested I make the appointment in the first place. My therapist even offered to call the doctor and tell him how stable I was emotionally so that he could stop brushing off my symptoms. Doctors are so eager to blame things on stress/anxiety/depression and these days, if a doctor says one of those words, I find a new doctor. Luckily, my current doctor is ver
  20. I'm wondering if anyone has any tips/tricks/motivation for the everyday living with dysautonomia and other chronic illnesses. Obviously the flares suck and the moments of super high heart rate or super low BP or other bad symptoms are awful, but I find that sometimes the most exhausting part of this is just the amount of daily self care I need, even on the good days. For example, my doctor has me drinking 3 liters of water a day. Even just having to do that day after day after day can get so miserable. Then you add on the meds, the salt, the diet restrictions, the layers of clothing due to bod
  21. Have you considered/talked to your doctor about a pacemaker? I know that for some it's an option, especially when the meds/salt/water aren't stabilizing you enough.
  22. I have Neurally Mediated Hypotension, which I believe is just another name for orthostatic hypotenstion (I've gotten mixed messages about that). But it's essentially just a different form of dysautonomia, instead of POTS. Dysautonomia can show up in so many different forms, POTS is just the most common one. But they're pretty much all sub-categories of the overarching dysautonomia label. My heart rate goes up on TTT by at least 60bpm, but I was never diagnosed with POTS because my blood pressure drops so significantly that the doctor said the increased heart rate is just a natural response
  23. Does she say what type of headache it is? Where the pain is located? I used to get frequent headaches that felt like a pulling sensation, like the front of my brain was being pulled away from my skull. Looking down and then up would make it worse. My doctor said it was caused by low bp, and once we got my BP up the headaches went away.
  24. When you go to the doctor, do they run a tilt table or just make you lay down and stand? I've found the tilt table is a whole different experience and far more likely to make your symptoms appear. I don't know of any smart watches that track BP. But you can buy a BP cuff and a pulse ox and run your own test at home and take pictures of the results. Personally, my doctor will not diagnose based on info he did not test himself but every doctor is different so I wish you luck!
  25. I've found that after taking a medication for awhile, my body adjusts to it. So I gain a lot of weight in the beginning, but then after my body gets used to it, my weight becomes more stable. Then it's just about losing the weight I gained, which can be done by healthy eating and exercise if you can tolerate it. Personally, I don't like fad diets, so it's never about any specific rules about what I can and can't eat. I just monitor my calorie intake via the fitbit app, which will calculate how much you can eat each day to achieve your goal weight. You can also schedule an appointment with a nu
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