vepa

Members
  • Content count

    77
  • Joined

  • Last visited

Community Reputation

0 Neutral

About vepa

  • Rank
    Advanced Member

Recent Profile Visitors

241 profile views
  1. vepa

    POTS medical alert dog

    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. vepa

    "Outgrowing" Pots?

    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 "oh, that used to happen to me when I was a kid." And maybe a lot of the people who grow out of it never get officially diagnosed. I know I didn't get a diagnosis until I was 25, and hear similar stories from many others.
  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. vepa

    Showering and pots

    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. vepa

    New diagnosis, need direction?

    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 that I can find in my regular grocery store. Many of the options will have the similar effects though, as they're all going to provide necessary electrolytes to stabilize POTS symptoms. Has your doctor discussed compression socks with you? They weren't life changing for me, but I definitely noticed some improvement in blood flow and recovering from symptoms quicker when I'm wearing them.
  9. vepa

    Muscle tremors?

    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 definitely think the cold could have triggered it, since at first I just felt like I was shivering before it got more extreme, but by the end I was sweating and super overheated.
  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. vepa

    Kardia Mobile

    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. vepa

    Thermotabs and Instant Nausea

    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. vepa

    TT test tomorrow

    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. vepa

    Thermotabs and Instant Nausea

    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 the equivalent of two thermotabs in them (twice as much chloride, sodium, and potassium) plus added vitamins. Pedialyte is essentially a liquid version of a thermotab, except with a lot more potassium. With all the electrolyte options out there, I decided that the torture of thermotabs simply wasn't worth it.
  15. vepa

    Not sure what this is...

    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.