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Everything posted by Derek1987

  1. I understand all of that. My blood pressure always shoots up when I stand up. But my question really is why is my lower number normal and my upper number so high in comparison. That was a reading laying down. Now if I stand up my lower number will rise to the high blood pressure range as well. I was just curious why my upper number is bad but my lower number is good while lying down. It's always the case when laying down.
  2. So my specialist believes I have hyperpots. I just took my blood pressure laying down. 150/78. I took carvedilol 6.25mg this morning. Is this a typical symptom of hyperpots?
  3. What does a geneticist do? Keep me posted. Sounds like I really need to motivate myself to go there.
  4. My specialist wrote me a prescription for ALA. It broke me out really bad on my arms of all places. I stopped taking it and my skin cleared up. She told me to buy off of Amazon. Not sure why there would be a difference?
  5. IP Man 4 is on the way. Teaser trailer. Yes it is real.
  6. Sorry to hear about all the struggles. I'm still having problems toi. I have to drink water and swallow food at the same time so I don't choke. Sigh.
  7. These are by far my favorite movies to watch. I'm not too big into super hero movies. I prefer real talent. Top 2 martial art movies of all time for me. 1. Legend of drunken master(1994) - Jackie Chan 2. IP Man(2008) - Donnie Yen. I love the whole franchise but the first one is a masterpiece.
  8. Well...I made it to my primary care doctor today after rescheduling twice. I wanted to shave today but that'll probably have to wait till tomorrow. Never been this long without a shave.
  9. What is your blood pressure when you are feeling normal and what is it when you are feeling faint? I take midodrine to boost my BP. This weekend my BP was really low for my standards. 104/68. Usually it's running high. Might be because I just increased my carvedilol dosage. Not sure. But I freaked out a bit and took midodrine to bring it up. My BP is all over the place so I have to keep an eye on it. Such a pain.
  10. I've almost choked several times. I'm wondering if this is part of dysautonomia or possibly a side effect of carvedilol. I looked up side effects of carvedilol and one of the side effects is hard to swallow. Is this a symptom of dysautonomia as well? Im hoping this is a medication side effect only.
  11. Can you elaborate? Never heard of it. Pretty sure I have hyper pots.
  12. This has been going on a long time now I just never mentioned it. Everyday at some point from my knees and below I feel my legs pulsating. I've been mainly stuck in the bed since September. Anybody experience this and find out what exactly is going on?
  13. I'm surprised you don't take any benzos regularly. I take 4mg of Xanax per day. I try and survive on 3. It definitely helps but definitely doesn't fix everything either. When I collapsed at work back in September, once they gave me Ativan into my veins, it stopped my body from trying to faint. I actually fell asleep for 10 minutes. My body was constantly trying to faint for like 45 mins until the Ativan kicked in. I was basically trying to fight from fainting which was probably making my body want to faint lol idk.
  14. I'm not sure about those issues you mentioned. My dad and I don't talk on a regular basis. But I did talk to him recently about my health. I know he takes bystolic to slow his heart rate down. He takes a medicine for tremors and I know he has heart palpitations. His hands have shaken his whole life and so have mine. He said he just started getting heart palpitations but I got them in my very early 20s. Those are symptoms we share but I have more symptoms and more severe. My dad is able to work and function. One of my doctors told me usually when a disease passes down, it gets worse. My autonomic specialist doesn't think it's hereditary but who really knows.
  15. Are they accurate with blood pressure and heart rate? If so, it seems like they would be easier to use. One of my doctors used this kind on me. I forgot what doctor as I'm seeing so many now like I'm sure the rest of you are.
  16. What was the diagnosis that gave you the win? Or Any other details you want to share on how you did it.
  17. Lol I used to think it would be my dream job. Are you pursuing disability or on it already?
  18. Yeah my career changed to professional laying down in bed. Went from always vertical to always horizontal. I have a few side jobs. Taking medical tests. Waiting in a lobbies. Looking at documents that tell me how much I have to pay etc.
  19. I hear you bro. This illness sucks. I think I found a new trigger. The smell of onions. I am flushed, nauseated, shaky, and just fill so sick, along with my head feeling like it's floating. Just from a smell. My sleep isn't great. I have to take Xanax to help me sleep and I still don't sleep well. My wife is also disabled and she is down and out right now. I gotta go pick up my stepdaughter from school. Lord help us all.
  20. Which videos are you talking about? I'm pretty scared all the time. Not because of videos. Because of my illness. If that makes you feel any better....
  21. Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.
  22. Glad they didn't do that to me or I'm sure I would of passed out. How did they get you to come to?
  23. Not sure what nitro is. What's it's purpose?
  24. Me too because I'm still hurting from that TTT. I have a small fever. Sweaty hands. Double bags under my eyes. Nausea. Feel so sick. And I have a neurologist appointment tomorrow. I am so done right now. Hope you get answers and feel better as well.
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