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MattT

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  1. Thank you for posting this. This is new information to me, and posts like this give me hope as well as ideas for moving forward
  2. Hi everyone, I know some of you have seen Dr. Yan-Go in Los Angeles. I was wondering if it was difficult for you to get in to see her, and how you got an appointment. Did you need a referral? I don't really have a sympathetic GP, and while I'm essentially positive I have dysautonomia of some sort, I've never been officially diagnosed with anything. I was thinking of trying to go see her for testing or advice or I don't know what. Thanks!
  3. First, have you thought about what would happen if they actually treated you in the E.R? They are going to treat you with regular doses of vasoactive drugs. Drugs you are hypersensitive to. If you go in there with super-low blood pressure and they give you a full dose of dobutamine or something it might kill you outright. Even though it ***** to be treated like an idiot by the doctors, I think your situation is ideal in some ways. You get to sit in the E.R. under observation for a while in case something serious does happen, but they aren't treating you with medications that could be very dangerous. I can definitely relate as well. I seem to be in the exact same position as you - I've become progressively more sensitive to anything that affects the autonomic system, to the point where I can no longer drink a cup of chamomile tea or take even a quarter of a magnesium tablet without feeling like I'm going to pass out or die. My reactions are the same as yours: low or high blood pressure and heart rate in seemingly random combinations, loss of blood flow to the extremities, unable to move without making things much worse or starting to black out. I'm too scared to take much of anything myself, but if you feel like you need the pain medication I think lieze's idea has merit. E.g., I'm definitely getting the RDA of magnesium in my diet and that isn't making me feel terrible like a tablet would, probably because it's spread out over time. Plus, if you gradually titrate up, you can stop if you start to notice negative symptoms without getting a full blown reaction. I've found myself falling into the same attitude: "Why has God let this happen to me, why is everything going wrong?". In reality though, I think my situation has a lot to do with the unhealthy lifestyle I lived in the past, and without God's mercy I'd probably be dead already. I have to echo the other posters here, I believe He loves each of us unconditionally, even though we don't deserve it, and even though it may not feel that way at times.
  4. I am seriously considering trying helminthic therapy. This is an old thread, so I was wondering if anyone has had any experience since it was posted. Seems doubtful, but I thought I'd ask. If I decide to go for it I'll keep you updated on what happens.
  5. Hey Dunky, you have my sympathy. I'm a 28 yr old male, and I have almost exactly the same symptoms as you (my blood pressure is rather high though), so I totally understand how you're feeling. It ***** to be in the prime of your life and have everything ruined by this disorder. I started having problems around 6 months ago, and I've been having the same heart issue as you recently: weak beats and a slow rate that won't go up. It's lead to almost passing out a couple times and I'm scared it's just going to sort of quit. 5 months ago I could see it beating out of my chest all the time though, which can't have been good either. Anyway, I know how terrified you must be, cause I'm terrified too. As hard as it is, I've been finding it helps to try not to think about it so much. I'm trying to just come to terms with my mortality and let go. I'm not sure if you're religious, but I know God has given me strength that I didn't have alone. I've been taking CoQ10, which seems to help me (though others have had mixed results), as well as benfotiamine, which also seems to help.
  6. Thanks for your well wishes! That may be the best option in the end. I've thought of possible SA node issues, though I'm not sure if that's the problem. Even though 50bpm is low, it shouldn't be causing fainting, yea? It never got any slower than that, even when lying down, just weaker. But of course there's no way to know without having it checked properly. Normally I'm between 60 and 80 at rest.
  7. Hi all and thanks for your responses :-) I was checking my pulse on the left side only, and I believe lightly enough to prevent problems. I can't think of anything in particular I was doing that would have caused a vagal response. I'm pretty sure I wasn't holding my breath at any rate. My stomach was probably full (I've been having problems with it not emptying properly), so that may have been an issue. I haven't had a holter or event recorder. I had ekg/echo/stress several months ago, which were relatively normal at the time. I have a neurologist appointment this Thursday and I'll talk to him about it, but I'm not sure how helpful he'll be. I'm the same as both of you, my inclination is to go the E.R when something like this happens. Unfortunately, the E.R. is obscenely expensive, even with insurance, and I've been twice in the past 6 months already to no avail. Some members of my family don't think there is anything really wrong with me, and I'm sure another visit would prove very unpopular.
  8. Hi everyone. I'm new to the forums, and though I don't have an official diagnosis, I'm pretty sure I have some kind of dysautonomia. I've seen a few doctors and it seems like nearly everything else that matches my symptoms has been ruled out. A couple nights ago I had a very frightening experience. I noticed that my pulse was feeling slow and weak (I can feel it most of the time) and my hands were looking grayer than normal, so I checked it and it was around 50. I decided to get up and move a little, but even with standing and walking around the house it didn't get above maybe 55, and moving was making me light-headed, so I sat back down. A few minutes later I got in bed. Lying there, I started to feel even worse. I checked my pulse at the neck and over the course of a minute or so it got weaker and finally disappeared, and everything began to go black. I sat up right away and my heart rate went way up, but my pulse was still really weak, and every time I laid down again the same thing would happen. Basically at this point, I'm worried that lying down is somehow reducing the flow of blood to my head, and that this is going to happen while I'm sleeping or something and kill me. Has anyone else had a similar experience and lived to tell the tale? Any idea what might be causing this?
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