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Everything posted by Derek1987

  1. Yes I hate getting haircuts now. I am triggered. I had one instance where I knew something was wrong. And this was before I was diagnosed or saw a specialist. My forehead started to sweat and my anxiety was off the charts. I tried to play it off. She probably thought I was crazy. I believe I was squirming a little bit. I now only get haircuts during the weekday where nobody else is there getting a haircut. It has helped. But it's a battle I deal with now.
  2. I actually printed out your article on hyperpots and gave it to my PCP. With one of my other doctors writing up a letter of what's going on with me and that article, I think my PCP is taking me more serious. I think they thought I was faking to get disability. I'll probably print that out and give to my other doctors as well.
  3. I'm talking about the oil with no thc. In other words it doesn't get you high. Supposedly people are getting pain and anxiety relief from CBD oil. Whether through vaping or the droplets. Any success stories? It's a bit expensive. But I'm willing to try it.
  4. If anybody knows. Since the near fainting/spinning outta control/no balance episode, I take quick showers. Ever since I took one today, I've been suffering for hours and hours. No let up. I believe it's adrenaline. Sweaty palms, extreme anxiety. This isn't the only time it's done it to me. Today has been torture. The only thing I can think of to do is lower the temp of the water. I just wonder why it would go on and on and on. I can't sleep because of it.
  5. No. Just my throat and heart. I forgot to mention it to my PCP my last visit. 🤦‍♂️
  6. 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.
  7. 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.
  8. 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.
  9. I would like to hear about this as well. The heat really gets me flaring.
  10. 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.
  11. 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?
  12. What does a geneticist do? Keep me posted. Sounds like I really need to motivate myself to go there.
  13. 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?
  14. IP Man 4 is on the way. Teaser trailer. Yes it is real.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. Can you elaborate? Never heard of it. Pretty sure I have hyper pots.
  21. 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?
  22. 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.
  23. 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.
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