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Everything posted by Derek1987

  1. I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. So it sounds like me seeing this specialist for the adrenal glands is probably a waste of time most likely. I'll still go but these medical bills keep growing. 🤦‍♂️
  2. I didn't know we could have adrenals from sympathetic neurons. I don't even know what that is. I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? I have lack of faith in doctors. My autonomic dysfunction specialist tells me I have hyperadrenergic POTS but never told me to get a scan of my adrenal glands to make sure I didn't have any tumors on them. It was actually my psychiatrist who told me it could be a possibility. So I got tested. No tumors.
  3. Would that even be safe to remove them? Wouldn't that make us more prone to fainting?
  4. I've felt very mildly dizzy the past couple of days but my BP was high enough not to faint. Normal range. I feel like I'm laying on my back in the ocean and my head is floating over really small waves. It's very mild. Not sure what the exact definition of dizzy is in POTS. I felt a little spinning action yesterday. Not near the spinning where I took a long hot bath just trying to relax and tried to get up and couldn't walk a couple months ago. I do have midodrine but I haven't taken it since my BP was normal. Another odd detail. I haven't had any caffeine in a couple of months. I drank a 12 ounce coke. It dropped my top BP number 20 plus points. I thought that was odd. My top number is usually consistently a little high. From 130-140 average. The coke dropped it very quickly. Don't know what to make of that.
  5. Might just be my phone but I can't see the pictures.
  6. I have been having trouble getting over this bacterial infection for at least a couple weeks now. And I'm on antibiotics. Just when I think it's going away, I wake up in the morning and I can just tell my throat is getting those white patches back. I've never had this much trouble getting rid of it. I get this every 1-2 years. I get these White patches on my tonsils then I take antibiotics and I'm fine. I used to even work through it fever and all. Now all I do is rest. I figured I would be over this by now. I've always wanted to get my tonsils removed because of this. I wonder how well I'd do with surgery. That's a whole different topic though.
  7. Yes. And just as I expected nothing is wrong. The test did give me a quarter sized dark black bruise though. And I have to pay to get stabbed and shocked. Crazy concept. Basically he is referring me to Vanderbilt. Im seeing a specialist here where I live but I think Vanderbilt will have a lot more knowledge/tests. I didn't wanna go because it'll be a 3 plus hour drive. That's gonna be so hard on me. @Pistol been telling me to go for the longest. Hopefully it'll be during the cooler months. The summer is brutal on me.
  8. The thing is my wife goes to all my doctor appointments. She hears the doctors and even acknowledges my limitations. But she's always complaining about how much she has to do. And that's because I'm out of commission. So I feel guilty and it adds stress to me. As far as dates, the only thing we can do is watch movies at home. If I were to go out to a restaurant, I wouldn't be able to make it. The crowds, the noise, sitting up too long. If I somehow made it through, it would be torture and I'd be sick for a few days. She thought i might of gone to the movies with her yesterday. I'm like really? I barely survive doctor appointments. I think she knows my conditions, she's just unhappy with it I feel like. She has her own disabilities as well. I'm always like hey slow down. That's enough for today. Did u take ur pain medicine? She gets mad at me telling her to take her meds. I bought her a tens machine, supplements, hot patches. I tell her no don't worry about cooking today because she's hurting. I don't think she realizes just how bad I am. I don't know. She understands more than anyone else in my family though. Nobody understands. The last time I went to the ER, I was explaining my story of being bed ridden since September. The nurse had a weird look on her face and said I just saw you walk. I tried to explain but I don't think she received it. It's hurts nobody really understands.
  9. For the past few hours my anxiety has been really bad. My hands have been a bit sweaty and also have gone cold. I have a weird feeling in my gut. I feel slightly dizzy at times. Or maybe it's the anxiety? My fingertips are tingling. Theres times where I feel bad then there's times like this where I feel scared. I just feel like I'm malfunctioning. My BP is good. My heart rate is high 50s low 60s. Yesterday it was consistently in the 80s. It always changes. I'm just trying to figure out if that's the right time to take midodrine. My BP is fine but my adrenaline is obviously high. I just went over my Xanax daily dosage by half a pill. I was trying not to take any and definitely not go over my daily dosage.
  10. My wife is supportive of my health but sometimes she doesn't understand. She asked me to hang a curtain. It probably took me a month to finally will myself to do it. She would get so angry about it. I tell her I'm sick but she says it's because I'm forgetting. Which that's probably true too but the main reason is my health. It's hard for me to get motivated to shower and shave. She also is complaining about cuddling. I get it. But my illness makes me suffer to do it. The heat from her and just lying motionless is extremely hard. I can't just lay down and chill. She just doesn't believe how hard things are for me. I'm suffering everyday. And of course I haven't been on a date since before Sept 2018. Anybody else have misunderstanding spouses?
  11. You totally lost me on that last sentence.😲
  12. So I took benadryl for about 5-6 years straight every night to sleep. Ever since this disease has crippled me it seems I can no longer tolerate benadryl. I've taken it a few times and usually my body reacts weird. One night I woke up and got really hot and forehead sweats as if I was about to faint. Other times it seems like it makes my body produce a ton of adrenaline. I feel a weird feeling in my gut and I get jerked around by I guess the adrenaline hitting me. I don't know what it is. But I associate those weird punch in the gut feelings with fainting. That's how I was on my last day of work. Felt like a gut shot of something to my stomach and my legs collapsed and I was on the ground and my body was trying to faint. Can anybody else relate? It sucks because benadryl is the only thing that gives me good sleep.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. Thanks for the replies guys. Good to know I'm not wasting time and money. The medical bills keep pilling up!
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. 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?
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