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Everything posted by kaevne

  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 syndrome has such a large array of symptoms and presentations that it's not good to live by any hard and fast rules.
  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 lie down is the increasing dizziness and head pain. What gives? Is this just due to being male, and the female presentation of POTS is skewed towards the exercise intolerance and fatigue? Any thoughts here? Should I be pursuing a differential from my doctors?
  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 dizziness as the feeling you get when you play that spin-the-bat game. Like your eyes are spinning and you can't keep yourself balanced. This isn't what I'm feeling whenever I'm upright. I want to verify that I am feeling the same dizziness that everyone else here is feeling. In some ways, I'm trying to confirm my diagnosis. I want to try to find the best description of how I feel, because there really isn't another disease or disorder I can think of that would help outsiders understand. Here is a list of the many different ways I would try to describe my symptoms. It feels like my head is way heavier than it really is. One forum user here described it as "head full of cement" feeling. This is very accurate to me. When I move my head, I feel like I don't have a correct grasp of where my head position is. It feels like my head is 50% heavier than my brain thinks it is. Another analogy I use is that it feels like a volleyball is tied to a rope that's attached to the top of my head. When I'm moving around and looking around, it feels like the volleyball moves in that direction and pulls my head's momentum there for a little bit. It feels sort of like the dizziness you get when you're slightly buzzed from alcohol. It's not the "head is spinning" sort of feeling when I'm super smashed. It's more of the slight off-ness that you feel in your head balance that's magnified 10x, yet you can still balance the rest of your body just fine. After a while, usually in the afternoon, the dizziness feeling gets paired with a sort of throbbing orthostatic headache. My POTS specialist said that this occurs because POTS' poor blood management causes my blood vessels in my head to constrict or contract by magnitudes, causing a throbbing headache. For the first year of my symptoms, I was ignorant of #1, #2, and #3, and I thought I really just had an orthostatic headache. I went to many neurologists about a possible CSF leak and found nothing. I now recognize that I'm not actually feeling pain in #1, #2, #3, and the pain only occurs when an orthostatic headache comes on. It was only until I was referred for a TTT that I was diagnosed with POTS. (60 resting 100 standing). My primary symptom is chronic dizziness, and the orthostatic headache only happens sometimes. Second, I want to verify various experiments, observations, and theories: I get a feeling of immediate relief when I lie down. It does sort of feels like the blood is running back to my head. It feels my heaviness is being slowly reversed. Like tiny gremlins are removing cement from my head one block at a time. This is the best I can describe the relief. I get a degree of this same relief from being in a swimming pool with the water level up to my neck. This makes sense because, theoretically, the water pressure forces my blood back up to my head? Can anyone else verify this? I feel less dizzy in the morning when I wake up, and this gets gradually worse as the day goes on. I assume this is because I have a full night for the blood to reset back to my head. As the day goes on, the blood drains from my head, in spite of the attempts at compensation from my rapid heart. The greater brain hypoperfusion causes more dizziness. Caffeine, Marijuana, and Nicotine have no effect on my symptoms. Alcohol makes the dizziness worse and can trigger a throbbing headache. Midodrine lessens the heaviness feeling for 1-2 hours after I take it. It doesn't take it away. It helps take away 30-40%, I would estimate. I am currently on 10mg 6x a day. For the 3-5 years before the onset of my POTS symptoms, I started having to urinate more and more frequently. It was only after I was put on Fludrocortisone, DDAVP, and sodium tablets that this went away. I now urinate only a few times a day, like I remember for most of my life. I definitely think the frequent urination had something to do with POTS. Maybe something to do with renin? Water consumption has a definite bearing on the intensity of my symptoms. Staying hydrated through the day lowers the average dizziness. I can get good relief for 15 minutes from chugging 2 full large Gatorades quickly. A family friend who is a cardiologist who does not specialize in POTS says that POTS is a strange disorder that seems to frequently strike otherwise healthy young people. He believes this is an important clue (possibly for the auto-immune component). I find it strange that, as a male, I came up with POTS. I'm part of the minority, and I don't experience any of the other symptoms people here seem to get. I don't get fatigue, palpitations, or syncope. I exercise fine and 3-4 times a week. I have no problem doing heavy weights and heavy cardio. Eating has no effect on my symptoms. I still work fulltime as a software consultant, though it's hard. This perplexes me because it feels like I don't have what everyone else here has except for the dizziness. My doctor reminds me that I should feel lucky that I have such a mild form of POTS. He frequently sees patients who can barely stay upright and faint at the office. Compression socks, stockings, and the abdominal binder do not seem to have a noticable effect. At least, not one that's any greater than the Midodrine. Pyridostigmine did not have any effect for me more than the Midodrine. I felt very depressed for a while from the symptoms. I spent much of my idle brainpower feeling sorry for myself and felt borderline suicidal. I was desperate, and went to my PCP and she told me I can try counseling or Lexapro. I went with Lexapro. After a week, I was in a great mood and didn't have that constant morbid thinking. Even though my POTS symptoms were the same, it felt like a veil was lifted from my eyes and the whole world was brighter. Thank you for reading. This is a collection of my thoughts and observations over the years, and I'm also looking for some validation on any of these. I am still optimistic that my POTS will clear on its own, and that we are on the cusp of a breakthrough in POTS research. Let me know what you think and your experience.
  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 do.
  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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