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Derek1987

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Everything posted by Derek1987

  1. My last day of work when I collapsed but remained awake. When I was at the hospital I was laying down and I think it was 156. Not sure what it would of been standing up. I was panicked as well though. My body was trying to faint for over an hour even while laying down. When they gave me Ativan my body stopped trying to faint. They kept me overnight because they had no idea why my heart was beating so fast. Basically they did an ultrasound and I wore a heart monitor all night and told me they have no clue and to see my primary care doctor and let me go the next day. I was terrified to be let out of the hospital. And that's where my journey began of finding out I had POTS. I saw a cardiologist and he didn't understand. He referred me to another heart doc who deals with electrical signals of the heart after I wore a heart monitor for a month with the cardiologist and saw my heart wasn't acting normal. The other heart doc immediately believed I had autonomic dysfunction and referred me to a autonomic dysfunction specialist. And there is where my POTS was confirmed.
  2. I take Xanax prescribed by my psychiatrist. Cold air keeps me calm as well. Playing video games. Staying away from lights and sounds help me too. Sometimes my cat helps. Sometimes nothing works and I just lay in the dark with fans on. I started taking lower temp showers. When I go out in public is when I really battle with it. Like to a doctor's appointment. My adrenaline runs so high for so long, when I get home I crash and fall asleep. It's really miserable.
  3. I've been on antibiotics for a few days now from some type of bacterial infection. I can barely stay awake. I used to be able to work with the flu with outside conditions.
  4. Lisinopril caused me to have low potassium. Now that I'm not on that anymore, my potassium has remained in the normal range. Just my knowledge I can share with ya. It might not be that way for everyone though.
  5. So this explains why my heart rate has been really high even while laying down. I have white patches on the back of my throat(bacteria) and have had fever for the past few days.
  6. Thanks for the replies guys. Good to know I'm not wasting time and money. The medical bills keep pilling up!
  7. I'm seeing a neurologist separate of my autonomic dysfunction specialist. The only reason is because I just want to find out everything possible. I told him my background that I have autonomic dysfunction and gave him my Dr records from my specialist. He did a couple tests I've already done before. Today I did an EMG. The guy put some gadget to both arms and my right leg and gave them shocks I guess. Then the Dr came in and put needles in my arms and then my right leg in various places. Is this test even beneficial for us? I'm just wondering what it can find out. On a separate note, while the test was slightly uncomfortable, my body must have hated it. I've been laying down for hours with my heart rate a little over the 100 range. And my bottom BP number is higher than normal for laying down. I also have a small fever. That heart rate and bottom BP number being that high while laying down is not normal for me. I hope it's just my body couldn't handle the test and needs time to heal. I hope it didn't mess anything up.
  8. I haven't taken one since lol. My pain has gone away 90 percent. It's been a week I guess. I read muscle spasms are a part of this disease. Quick Google search so not so sure how valid those findings are. I'm scared of my blood pressure dropping too low because I still want to take my carvedilol. Although that doesn't seem to be helping. Sometimes it brings my blood pressure down but I still suffer with bad anxiety, sweaty palms, high heart rate upon standing etc. Ive got to figure out a way to exercise. Gaining too much weight over here. Ah so annoyed with this. Couldn't even pop fireworks with the kids. I love fireworks. Bleh.
  9. I don't think I have those idk. No autoimmune diseases have been discovered as of yet. Still pretty new in this journey of figuring out what's wrong with me.
  10. The muscle relaxer helped. It is Flexeril. But.....I took it and I did not want to wake up. I could have slept 2 days. I got up because someone rang the doorbell. I ate and went and checked my blood pressure. It was 148/55. This is without me even taking my beta blocker yet. I took my pressure again and got similar results. I got nervous about the bottom number being so low and took midodrine. It got it back Into normal range and my top number dropped to about 140/high 130s. Don't understand why there's such a huge gap. I'm scared to take the Flexeril again. It helped but I don't want my pressure going too low and I know I need to take my carvedilol. So basically I'm still in pain. Shrugs.
  11. It started maybe 3 days ago. My chest was hurting. Today I woke up and it's the worst it's been. It hurts to breathe and move certain ways. The pain goes from the center of my chest up to the whole area around my collar bone and then even to my shoulder blades. It feels like stress. But 3 days in a row constantly and getting worse? And at the same time my right calf muscle was sore as if I had a cramp and was recovering so I got a little nervous. I went to the ER to make sure I wasn't having any blood clots. That checked out fine. There was no fluid in my lungs or anything. X ray and blood work came out fine. The doctor said muscle spasm something. My memory is shot. My wife stepped out because we had been there for hours. He prescribed me a muscle relaxer and Aleve(oh wow that'll help) Is this a POTS issue? I've read about people having pain and I haven't had any pain until now. Is this a type of pain people experience with POTS?
  12. I get headaches nearly 7 days a week now. The pain is behind my eyes and on my forehead. Aspirin usually takes most of the pain away 90 percent of the time.
  13. You can download an app called " blue light filter" that changes the light on your phone at night and supposedly helps with this. You can turn it on and off as you please. I don't know if the science is legit or not. Never really researched into it. I think some phones have that mode built in. But I don't pay $1000 for a smartphone like so many people somehow do. I'm definitely addicted to my phone. My problem is I can't sit still. I have to be playing a game or on the internet or something. It seems to help me but maybe it's not. I don't know.
  14. Hopefully somebody has some info on this. My pharmacy didn't have the meds in stock so I haven't even tried it yet.
  15. So in addition to taking carvedilol, my autonomic specialist prescribed me Bethanechol 10mg 3 times a day. She explained the purpose but I forgot everything she said lol. My wife probably remembers but I want to get y'all's experiences with it and what the purpose is. I took a test which showed my adrenaline levels are still high. They attach 3 electrodes to your body and tell you to hold your breath for so long etc. And somehow it determines adrenaline levels. The first time I did the test I scored an 11. A normal person is a 1. This time I scored a 4. Which according to the results, that's a lot better but I'm still not normal. the weird thing is, I felt way worse during this test than I did the first time. My hands and arms got super red like fruit punch red, my face got flushed where my forehead got moist a bit. I had a jump scare feeling happen during the test. I also felt like garbage after the test. according to the results, I'm supposed to be feeling better. But I haven't noticed a change. In fact I feel worse I think because of the heat. Anyways what's your experience and knowledge on this medicine. And if you any thoughts on everything else I said, I would be interested to hear about it. Thanks!
  16. I think I've had it all my life in my opinion. My dad takes meds to slow his heart down. His hands have shaken all of his life. So have mine. People always would point it out to me. I've always had anxiety since I can remember. I started having heart palpitations in my early 20s. I started being extremely fatigued as well. I just wanted to sleep after work because I was so tired. I guess I just ignored it and kept moving. I got married in 2016. Which obviously I had less time to even sleep. I was so tired all the time and my wife would complain in rage because I never wanted to do anything but rest when I could. Fast fwd oct 2017, I was at Olive garden. I finished my meal and got really light headed. I got super hot. Lost my vision, my hearing, and the ability to move. Obviously I was taken to the hospital. I thought I was dying. The doctor said it's nothing to worry about. Fast fwd to Sept 2018 my wife was arguing with me about something. I was exhausted. And my body tried to faint out of nowhere. No warning signs. Went to the hospital. Found nothing wrong of course. It was a 3 day weekend so I rested. I went to work Tuesday and made it fine. Still exhausted. Wednesday after 4 hours on the clock, I was walking and felt like a shock punch to my stomach and my legs gave away. My body again was trying to faint. That's the last day I worked. After many doctor appointments and referrals, I'm just now being diagnosed with hyperpots. I have horrible anxiety most of the day. I went to the doctor a couple days ago. I was out of the house for like 5 hours. The adrenaline from the heat and being around people and sounds was killing me. When I got home, I couldn't keep my eyes open. Went to sleep. Woke up. Slept some more. I went to my autonomic specialist today and did another test where they put these electrodes on your body then you have to hold your breath and stuff. I couldn't believe how bad I felt. My hands and arms turned super red. My forehead got a bit moist. Just from breathing a certain way. I pretty much suffer 90 percent of the day. I can't and don't go anywhere but to the doctor. Anyways I think I've always had it, and it was passed down. The older I got, the more my body couldn't handle it I guess.
  17. Yes yes. How did your illness start? Did it come on suddenly or gradually over time you had issues popping up?
  18. I've had a reading at the doc's office 180/120. It's not usually that high but it always goes up when I do anything at all. If I do a chore 10 mins or longer, it's not unusual to see 150s over 100 plus. My lower number is always in good range when I'm laying down. My upper number is still high for some reason. A little lower laying down than being upright but still high. Then again sometimes both numbers go too low laying down. Because of meds. Sometimes I'll have to take midodrine to boost my pressure. It's a hassle checking bp all day. I went to the doctors today. I am so freaking tired. Not to mention tortured with adrenaline as I sat there. Looking like some type of addict. I had to go lay back in the car at one point. This disease is terrible. I want to do outdoor adventurous things. I love the outdoors. Can't do anything now. I go nowhere but to the doctor. Hit me up if you are feeling down. We can bond in our misery lol. Maybe it'll get better someday.
  19. I'm frustrated and depressed daily on top of being tortured. You aren't alone. I'm only 31. My wife and I can't even go on a honeymoon anymore. Unless something changes. I feel like utter trash today just from going to the Dr. Extra utter trash. But yeah, you aren't alone.
  20. So that's why my diastolic number is always good when I'm laying down but when I stand up it's high. Man this disease is terrible.
  21. Yeah it's awesome and really helps me. I wore sunglasses in the lobby(attorney's office) on Monday with the fan blowing on me. Probably looked crazy but the combination really helped me. Especially the fan though. When they called me back I just turned the fan off and folded it up and put it in my pocket.
  22. Yeah. I tried to support my wife by going to one of her appointments. When I was sitting in the room like that. I had a major episode. Thought I was going to have to go to the hospital. I layed back in my chair the best I could. Eventually I felt better. Or enough not to have to go to the hospital.
  23. I have really bad heat intolerance. Sitting in a lobby at the doctor is already tough. And then it's noisy and crowded and usually hot. When I get hot, my body wants to act crazy and go into faint/adrenaline mode. So I bought this fan off of Amazon. It is a dual head fan that folds up and is compact and fits in your pocket. It puts out a great amount of air even on the low setting. It has low and high. I did a test and it lasted 2 hours on high speed. It was still going but I couldn't stay up any longer and see how long it would really last. Just thought I would share. It's helped me. Edit: to find the fan I am talking about, type this in Google and it will pop up. B07NS7Z9G5
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