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Everything posted by Derek1987

  1. How do you know if blood is pooling in your legs? Is it just because your blood pressure lowers when standing or can you actually feel or see it? Or is there a test to see it? My specialist thinks my adrenaline just drains me to the point I faint. Which might be true. Today I was laying in bed and my hands and feet were cold but my palms were sweaty and my face was flushed.
  2. I don't think you can crush, chew, or break any extended release medicine. It would probably just make the medicine hit you instantly. I'm taking 30MG 3x a day. I'm about to start 60MG 3x a day. It'll only be my second week. This is not the extended release version. It does slow my heart rate down but I might be getting increased symptoms from it. Like feeling nasuauted has increased and also I'm getting hot flashes where my forehead starts to sweat a bit. But everyone is different. All I can say is just give it a shot. What are you officially diagnosed with?
  3. Could this be a medicine side effect and need to eat food with your meds?
  4. This happened to me in October 2017. I was out to eat at Olive garden. I was leaned fwd eating and I leaned back when I was done. I got lightheaded which didn't alarm me at first because it's happened before, but it progressed really quickly far more than I ever experienced. I got really hot and started sweating. I told my family something is wrong . Then my vision and hearing and ability to move went away. The scariest thing was, I was aware. I was so weak I couldn't move or speak. When I was in the ambulance, the paramedic told me my blood pressure is coming back up. It was so hard to speak
  5. No they have not. But I let my specialist know about it. The next time I see her, I will let her know about it again. I've only seen her once. So I'm just getting started with figuring things out.
  6. Seems like it's getting worse. Went to sleep nauseated and woke up immediately nauseated. I always have some weird feeling in my stomach too. I really started noticing it when I had my 3rd fainting spell that happened at work. It's a weird feeling that goes in a line straight down my stomach.
  7. Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke.
  8. I can't really give you any insight but my blood pressure is getting too low for my liking. But I'll get spikes that go way high. I'm pretty lost. I drank some coffee to boost my pressure up. Although I can't drink too much caffeine anymore or I'll feel really sick. I'm 31 now and relied on caffeine to help me through work through my 20s. Like 5 hour energy etc. My gf at the time was always mad at me for being tired all the time. So I guess I've been dealing with this longer than I thought. I'm just now having more major symptoms. I just started taking mestinon to slow the heart down
  9. I'm assuming it will come out fine since they already found out I was exposed to ticks. Or maybe that would cause an anomaly? My short term disability at my job is waiting on the results of the MRI to determine if I'm eligible for long term disability. I don't know why they are waiting on that as the specialist said herself I can't return to work until she sees how I respond to treatment. I even sent the disability company a statement from her saying I couldn't return until I see her again and see how I'm responding to treatment. It's like they are looking for any reason to cut yo
  10. Anyone else have issues because something was wrong with their brain? This was my first MRI ever and I don't even really know what they are looking for or what they can find.
  11. I'm pretty confused today. I took the pyridostigmine this morning. Initially, that medicine shot my blood pressure into 160s over 110s.But today I didn't take my Lisinopril. I was going to wait and make sure my blood pressure went up. It didn't. Laying down I was 120/70 for blood pressure with 60 BPM. I kept checking it every few minutes and it stayed in that range so I haven't taken the Lisinopril. I just took a shower. My blood pressure rose 120/93 with 150 BPM. Im laying down now to get my heart rate down. As usual... my blood pressure is never stable. Last night I woke up
  12. Well I've had anxiety as long as I can remember. After I fainted the first time, it got really bad, and that's because I was scared I was going to faint again. So more like PTSD. I'm not even sure if I'm diagnosed with POTS officially. The specialist just talks about the nervous system. I'll probably get an official diagnosis after I do all of her tests. I have a brain MRI tomorrow. She did say I don't need compression socks and she thinks my adrenaline goes nonstop. But at the same time she showed me an illustration of a person with autonomic dysfunction and how blood flow reach
  13. Today I just started mestinon and Lisinopril. The Lisinopril to lower my Blood pressure. My heart rate laying down between 59-64 BPM. Without mestinon, it's usually in the 70s. I actually started taking mestinon a couple of weeks ago and it was making my blood pressure go way too high so I had to wait to see my primary care doctor to get me back on my old blood pressure meds. So today is the first day I've had both meds. My heart rate is lower and my blood pressure has gone from good to high. It fluctuates a lot. But it hasn't been as high as it was when I took mestino
  14. I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo.
  15. I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up. The next 2 fainting spells, I layed down immediately as I fel
  16. I'm a console gamer. Mainly play sports and shooters. And red dead redemption 2 when I can afford it.
  17. I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my bloo
  18. I wonder why you need reviews for this condition. According to the internet and my specialist, there is no cure. It's been a long road for my wife and I. She finally was approved and we are waiting on the first check. It's been 3 weeks. Haven't received an award letter or anything yet. Drowning in debt. And my long term disability through my job is about to cut my pay in half. Sorry went off subject a bit there.
  19. If I was up for 45 minutes I'm pretty sure I would have fainted. I feel shortness of breath when standing for a couple minutes. I wonder why she didn't give me the full test. My wife said when I was in the standing position my hands were red and my face. and I would feel like I was having a mini hot flash or something. Not anywhere near what it was the first time I fainted. Not sure if that means anything. Tomorrow I'm starting my medicine the autonomic dysfunction specialist gave me. I tried it twice but it raised my blood pressure too high. I got some proper blood pressure meds from the doct
  20. Thanks for your reply. My autonomic dysfunction specialist doesn't seem to think it's pots from the tilt table test. But my tilt table test was only like 5 mins and I've read on the internet where they take ones a lot longer and even give medicine or something. The tilt table did show my heart rate was dramatically different depending on my position. But my blood pressure was high the whole time. Yesterday when I got to the doctor my blood pressure was 115/85 sitting down. When I nearly hit the ground in Walgreens later that day, as soon as I got home I took my blood pressure and it was 150 so
  21. Thanks you so much for your reply and story. It feels better to know I'm not alone. So now you are on SSDI ? Can you tell me how you were approved? My wife is disabled. It took 3 years and lawyer and hearing to get hers approved. She's had hip replacements, ankalosking spondylitis, fibromyalgia, osteroperosis, osteoarthritis. She's also in her 30s. She was approved 3 weeks ago. My body lasted just long enough for her to get disability . Now I feel like I might be next. If I were to go back to work again, I'd end up on the ground again. I'm wondering if I should go ahead and apply for it. What
  22. I'm going to make this short as possible. My name is Derek. This all started Oct 2017. I was out to eat with my mom and wife. I'm 31. I was leaning forward to eat then I leaned back when I was done. Suddenly I started getting light headed. I told my family. Then I got really hot to where I started sweating and eventually I couldn't see, hear, or move. My wife said she could feel the heat radiating off of my head and I turned white. The ambulance was called. I started coming out of it but I was so weak I couldn't move. I couldn't talk. When I was in the ambulance the paramedic let me know my bl
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