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Derek1987

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  1. The black and white cat is my new cat named Rocky. We've had him for a year now since he could barely walk. He's so lazy now. And yes he loves to sleep on his back. We got our older cat storm a new friend because the orange and white cat disappeared. Either an animal or a kid killed him.
  2. Yes that was my main motivation in staying. The seriousness of it. I hope the ultrasound was adequate enough testing. But we will see where it goes from here. Dysautonomia is a cruel disease. I wish the medical field was educated in it. When i can afford it, i am going to buy those leg compressor machine things. They have bags that go all the way up to your thigh that inflate and deflate. I can have that on while i lay down. And maybe an exercise bike to get on at least once a day to keep my blood flowing. Just dont want exercise to overload my body with adrenaline. Sometimes when i do a couple of chores and i go too fast, i might pay for it all day and night.
  3. Memphis, TN. One of the worst cities in the US. They were so swamped, they had the national guard helping and it still took 300 hours. I really have no idea how i made it. I tried to recline the best i could. And yes they usually pair me with a NP. I even got a student doctor at one point last night. Then the real doctor came and told me the news and jetted. When i was a kid, the show ER really had me believing thats how hospitals work lol. You know caring, urgent, know everything. Almost every person had some sort of attitude. Its like that every time. I believe cause im male and because of my age. I can understand to an extent because they are ignorant but illness doesnt have an assigned age to it. And nobody knows what dysautonomia is. Nobody. Last night when i was being rolled in the bed to ultra sound and then stopped, the ceiling kept moving but i wasnt. If they only knew the stuff we go through.
  4. Because of covid and the strain on the hospital, i waited in the lobby 10 hours or so. So i was in there like 13 or 14 hours. Idk how i did it. But they took blood and did an ultrasound and the doc said theres no clot and to get with my pcp. Of course i kept getting judged when i told them my lack of mobility situation. And of course nobody knew what pots or dysautonomia was. The lady doing the ultrasound was like so do u choose not do anything? Like yeah i chose to lay down for 2 plus years, struggle financially etc. Anyways next step, the pcp.
  5. Can florinef cause swelling in just one leg? My right leg(below the knee) and foot are swollen a bit. I started florinef in september. I believe its gradually built up. I might go to the hospital tomorrow to rule out any serious problems.
  6. Its helped a lot with me feeling faint when i stand up. I started in early september. It has made a big difference. However my right leg is a bit bigger than the other. Im not sure if thats related to florinef but i need to get that checked out. I have to make sure on my next doctor visit next week that my potassium levels arent too high from florinef. So just starting myself. I immediately got relief on the 2nd or 3rd day. I used to feel really lightheaded when i stood up. Rarely happens now. I still suffer with lots of other things though.
  7. Anybody had these tests done? To prepare for the VNG test, i had to clean out my right ear with debrox drops. I was at home and flushing my ear out. After about the 10th flush with hot water, i got really hot. I lost all of my balance. I was on the ground and couldn't get up and everything was spinning. My wife brought me my BP machine. it was around 170s/100. I layed there for 20 minutes or so and got up and i was fine. a few days later i went to take the VNG test. It was fine until they blew cold/hot air into my ears. The cold air i had no problems with. Then they blew hot air into my right ear. i expected to get dizzy but had no issues. When they blew hot air into my left ear is when i got pretty dizzy. She said water is usually seen as more harsh which i would agree with. it didn't take me long to recover. They said i had bilateral weakness in both ears. So my ENT doc wanted me to take the rotary chair test and the VEMP test to see if the issues of my ears was a physical or neurological problem. We both figured neurological because of the POTS. I took the rotary chair test first. They spun me around pretty slowly in a dark chamber with goggles on asking me random questions. when the chair stopped, i was dizzy instantly. then they said okay we are going to increase the speed. i wasnt feeling well already. i was strapped in with a seatbelt. the chair was spinning around so fast, the only thing that kept me in the chair was the seatbelt. i was hurting so bad i guess i was closing my eyes and they said keep your eyes open. the chair stopped and i couldn't take it anymore. i had to get out. this was the most suffering i've ever experienced in my life. my hands were tingling like crazy. i bet my BP was through the roof. i layed down for 20 minutes. i knew i wasnt going to get any better that day so i pushed through the VEMP test. conclusion? they said nothing was wrong which contradicts my VNG test results(at another hospital). i imagine how i felt that day is how some people feel when they are dying. it's not like an ouch i broke my toe pain. it's an internal suffering i can't explain. i would of rather broken my toe. i was sick until the next day. anybody else do these tests and have similar results? i see my ENT doc tomorrow to go over everything. i am also wanting to get my tonsils removed. she said because of my condition i might have to be in the hospital for 7 or 8 days because of dysautonomia. i am scared to get the surgery done now. but since i've had full blown pots, my heart pounds out of my chest when my tonsils get infected. which happens at least once a year.
  8. I asked my PCP to fill out paperwork for me months ago and they said they dont do that yet they did it for my wife. They didnt believe i was sick as i said i was basically. I ended up leaving because the the whole clinic was not good. Never callling in prescriptions, rude staff etc and it was far away plus they didnt support me. I didnt bother asking my new PCP to fill it out because he has no clue what i go through really. The cardiologist who referred me to my dysautonomia specialist half way understood my condition. He filled out only half of the RFC form. So i asked my dysautonomia specialist to fill it out months ago and she said no because my records should be good enough. I asked her one more time a couple of weeks ago and she actually said yes. And here is where i am. I have a strong RFC form from my psychiatrist though. I saw him first before being diagnosed with pots and seeing the autonomic dr. After my 3rd fainting spell, my anxiety crippled me. This is when my body completely broke down on me. He prescribed me xanax. It helps. I hate im on it though.
  9. Private message me and we can talk further. Ever since ive been on the beta blocker called coreg, i no longer experience this 99 percent of the time. This problem has now been solved for me.
  10. My daily routine is wake up and use the restroom/brush teeth. Fix something to quick to eat in the microwave. Take medication. Eat in bed. Stay in bed. I take the trash out once a day. I dont watch much tv. Im usually just browsing on the phone. I get up for bathroom needs. I take the litter out once a week which is like taking a trash bag out. But its heavier and leaves me breathing as if a normal person just did 75 jumping jacks. I hate doing that task. But on a typical day i really do nothing. Sometimes i might play video games for about 45 mins. But thats not every single day. If i add something extra in like going to the doctors, i crash with fatigue when i get home. One time i zip tied a power strip to the side of the kids bunk bed. 10 minute task. I was holding my arms up laying down doing this. It shouldnt have taken that long but once i was done i couldnt hold my eyes open. Idk i dont want to sound unbelievable even though its true. My typical days are doing nothing lol. So im hoping this RFC forms gives me credibility because i am only 33. My lawyer told me dont say you cant do anything. I mean i can try to do things but i always pay for it. I mean i havent even been able to go to the movies. As soon as i sit or stand, the adrenaline kicks in and it hurts. I just deal with it until i can lay down again.
  11. Shes only a NP but shes a specialist in dysautonomia. Apparently lots of schooling involved. She practices at a neurology clinic. What do you guys think? Im just nervous for the phone hearing. Trying to prep myself. I keep reading to keep your answers short but i want to say enough to where the judge understands my struggles. Like if he asks me a typical day, its going to be really boring. I havent been able to do much in over 2 years now. I dont want it to seem like i am faking or something. I am hoping this form holds weight. I know i made another thread 2 or 3 weeks ago. Sorry. Getting into final prep and all advice is appreciated.
  12. Well she said my ear was 100 percent clogged and dug a lot out but she said theres still 50 percent left and that i needed to use drops to get the rest. Not sure if she was being lazy or what. It hurt though with how deep she was going in with the tool. Im going to call her in a bit.
  13. My water was hot. Im assuming the same thing would of happened either hot or cold. Gonna try again tonight sigh. I have to get the wax out. Now im really nervous about getting my tonsils out. Any little thing can cause problems.
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