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About vepa

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  1. 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.
  2. 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.
  3. 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?
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. What do you consider a flare up?

    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 world suddenly dropped a couple inches, moments where I'm lying in bed and I feel like the bed is slowly rocking, and strange electric-like shocks/rushes to my brain that I have never been able to adequately describe to anyone. Personally, I have a huge aversion to doctors and the ER, and the only two times I've ever gone into an ER were once for a broken bone and once when I collapsed on the floor unable to breathe and a roommate called an ambulance. Neither of those incidents were related to my dysautonomia. I've had symptoms as severe as temporary paralysis of my legs or stomach pain so bad that I could only crawl to my bed, and I still did not go in. Obviously, I do not advise others to do the same, but your level of tolerance is going to be a personal decision. When in doubt, seeking medical care is the safer option. But many people I talk to say that the more experienced they become with their own condition, the less frequently they deem scary symptoms to be serious. I guess it's about being in tune with your own body, and trusting that you'll know when something is truly, seriously wrong.
  11. Nicotine and BP

    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 and has other risks that caffeine does not. Of the two options, I would suggest you try the caffeine first.
  12. Exercise heart rate

    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 very compassionate and willing to listen. They're out there, it just takes some trial and error to find them.
  13. 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 body temperature regulation issues, the activities I can't participate in, and all of those little things that healthy people never have to think about. Those are the things that wear me down the most, and there's no end in sight. Sometimes I end up giving up on it all, just to regret it once my symptoms flare. Anyone have any advice?
  14. 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.
  15. Diagnosed and confused

    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 to the blood pressure and not a POTS symptom. It's only POTS if your heart rate increases and your BP stays relatively the same. Although, some doctors disagree on this as well. My heart rate can also drop significantly, especially if I bend over and then straighten up. So basically, OH is dysautonomia, just not POTS. It's a rarer form of dysautonomia.