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Everything posted by Derek1987

  1. Mine is all over the place. 15 minutes ago it was like 150/89. Now I'm getting like 116/70 consistently. Heart rate is bouncing around too. And this is while laying down watching TV not moving. When it starts dropping I get worried of fainting. I hate this.
  2. The crazy thing is sometimes my BP is too low. At least according to the internet. Like 104/68 area. I think it's the increase in carvedilol. But then again sometimes it's still mostly high. Still talking about lying down readings. I do have Lisinopril as well. I was taking half a pill when I was on the lower dose of carvedilol.now i When my BP was creeping low, and I stood up my BP would be in the standard good range but my heart rate still increases to 130s/40s if I stand longer than 5-10 mins. As if I'm not taking carvedilol at all. I messaged my specialist on the portal. She really didn't comment on it but she wants me to see a specialist who deals with the adrenal glands I think. An endocrinologist. My body just doesn't want to work right.
  3. The lower number is always in a good range when I'm laying down. My upper number can still be high. But when I stand up, both numbers go up. If I'm up for a few minutes, my bottom number will raise over 100. 100-110 usually and then I lay back down.
  4. I would like to hear about this as well. The heat really gets me flaring.
  5. 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.
  6. 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?
  7. What does a geneticist do? Keep me posted. Sounds like I really need to motivate myself to go there.
  8. 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?
  9. IP Man 4 is on the way. Teaser trailer. Yes it is real.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. Can you elaborate? Never heard of it. Pretty sure I have hyper pots.
  16. 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?
  17. 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.
  18. 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.
  19. 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.
  20. What was the diagnosis that gave you the win? Or Any other details you want to share on how you did it.
  21. Lol I used to think it would be my dream job. Are you pursuing disability or on it already?
  22. 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.
  23. 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.
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