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kaevne

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About kaevne

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  1. Thanks for the reply guys. It's interesting to see the variety of responses here. RE: shan1212 and WinterSown, it's good to know there are some others out there who can also exercise without much difficulty. RE: Yogini, my tachycardia is compensatory for the lack of blood in my brain upon upright posture. My symptoms aren't caused by the tachycardia, I believe the dizziness and headache are primarily from brain-blood equalization issues. I got the information about exercise intolerance and fatigue from this POTS talk: https://vimeo.com/244851345 It seems like the whole syndrom
  2. I’m on Midodrine and salt. Hr was at +29 in two TTTs. BP unchanged so it was not OI and I was given a POTS diagnosis, which seemed consistent with my symptoms.
  3. Hey guys, I'm trying to gauge my POTS presentation here. I've been diagnosed for 5 years now, symptoms virtually unchanged since onset. Orthostatic dizziness, tachycardia, and headache. All immediately relieved upon lying down. One of the hallmarks of POTS patients is that they all have dizziness and exercise intolerance. However, for me, since onset I've been pretty fit. I exercise for 3-4 days a week. I can run 5k's regularly, climb for 4 hours at the bouldering gym, lift weights, etc. I also do not feel any fatigue. I can go through my day and the only thing motivating me to li
  4. This article came out a week ago. http://neurosciencenews.com/fainting-disorder-neurology-6293/ The research paper was apparently also published in https://insight.jci.org/articles/view/90183. Assuming this passes through peer review, it's possible we have a new route to explore in POTS causes. To summarize, researchers claimed to identify the markers for why a particular gene, NET, turns off in POTS patients. Apparently, there is an FDA-approved drug that will turn it back on in vitro, and they are looking into other routes.
  5. I go to Dr. Abdallah and he takes my Anthem BCBS insurance (pretty big insurance) for just the specialist co-pay. Not sure where you're hearing the concierge fee info from.
  6. I think it has to do with dehydration. Your body spending 10+ hours fasting will dehydrate you and give you all of the hallmark symptoms of dehydration. I'd Try chugging a sports drink or pedialyte before sleeping in.
  7. Yes, this is exactly the same feeling I get. I was worried that maybe I didn't get the same symptoms everyone else did, since "dizziness" doesn't quite describe the heavy-headed feeling. Rest-assured that you do feel what the rest of us feel. This helps me, going into a swimming pool neck-deep in water will force the blood upwards and you'll feel some measure of relief from the heavy-headedness.
  8. Where do you live? I see a POTS specialist in VA in the states if you'd be willing to make a trip. He sees a lot of international patients who are in the same boat as you in regards to a lack of regional knowledge on POTS.
  9. Thank you guys for the confirmation. It is strange how varied everyone's symptoms are yet clearly there's at least some overlap with my experience. I do feel like it's comforting to know that there's at least some people in the world who know exactly what I'm going through. Also, I am still taking DDAVP. @Nymph, I'd love to hear any more comments you and anyone else might have.
  10. Hi guys, I'm a 28 y/o male diagnosed with POTS 1 year ago by a POTS specialist via TTT, symptoms for 2 years. I do not have EDS or anything other related disorders. I had Lyme when I was younger that was cleared by a 3-month dose of antibiotics, along with chronic Hep B from birth. I've lurked for a while and I wanted to post about my experience to get some feedback. Sorry for the length of this post. First off, I've been trying to describe this symptom of chronic dizziness in a way that better elucidates how I feel. To me, I don't think dizziness is quite the right word. I think of di
  11. When I'm in a pool up to my neck, i feel more "normal." The dizziness abates a bit. I'm sure it's due to the atmospheric pressure pushing blood up to my head.
  12. I can completely relate to this. I was initially ecstatic that I finally have a diagnosis and an explanation for what was going on, but slowly depressed by the realization that there's not that much you can do. Midodrine helps but not much. I don't have the fainting issues but the dizziness + headaches are a constant reminder of illness. I am struggling as you are, and all I can contribute is that I try to take one day at a time. My goal when I wake up is to make it to the end of the day. It's hard but other than getting an MD PhD myself and researching POTS I don't see what else I can d
  13. I was getting awful nausea with the Thermotab and other salt tablets. I was taking them with water/Gatorade/tea. I've found that taking them with a can of Coke Zero or some other soda actually prevents the nausea from hitting. However, this might just be me. Hope this helps someone.
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