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Everything posted by Derek1987

  1. The test has me feeling like crap still. But during the test, it was torture. Especially when they leaned me up. I didn't pass out but there were moments where I thought it was coming. I got so hot and sick. My hands were shaking hard and sweating and I was flushed. Later on in the visit, I got nauseated after drinking water. And I was ill for the rest of day and night. Please PM me whatever tips and info you have. Like I said, I should have this diagnosis next week. You thought this all along. They were treating me for Rocky mountain fever at first. They thought that's what messed me up. I just hope my blood work comes back correct so I can be diagnosed officially. I want the right diagnosis of course but the sooner the better.
  2. Hey bro. Not sure what IST is but I'm 31 and my life is drastically different. I'm bed ridden at the moment. Have been since September. Gained weight. Depressed. Scared. PM me If you wanna chat. You aren't alone. Things will get better. It just takes awhile to get this stuff figured out. Hang in there. Like I said, hit me up if you want to chat. I would add more to this post but I'm so tired from my doctor appointment.
  3. It was torture. When they leaned me up, my body did not like it. Got really hot and flushed and ill. They took blood while I was doing the TTT. They gave me some ice packs. They think I have hyperadrenergic POTS. They think this blood work will prove it. Something weird though. I've taken two 24 hour urine tests and she said they both appear to be tampered with and diluted with water. Which I didn't do of course. They don't think I tampered with it but they gave me a drug test to rule things out. I'm Soooooo tired.
  4. The condition is causing panic attacks. My body is in fight or flight a zillion times a day. And when something like this happens to me, the panic goes into overdrive. But yes panic attacks is officially written in my psychiatrist Dr records. I've had anxiety my whole life. When the faint spells started happening, my anxiety amplified. From the fear of fainting and I guess the high amounts of adrenaline. I did an autonomic nervous system test that apparently shows my adrenaline is way above normal. A normal person was rated a 1. Mine was at an 11. I'm sure it goes higher than that when I'm really feeling fight or flight.
  5. It stopped on it's own but I still didn't have proper balance. The spinning seemed worse when I closed my eyes. I get nausea for no reason all the time. Not necessarily set off by anything but sometimes is. I took 2mg of Xanax which is what my doc said I could take during severe panic. It barely phased me. Too much adrenaline I guess. My hands were sweating and shaking. Could have been caused by the panic. My hands always shake to some degree though. @Pistol or anyone who can answer. Is dizziness and loss of balance a sign of fainting to possibly come or is it it's own symptom of this disease altogether?
  6. Yes that is the medicine. I asked the nurse practitioner about it and asked if it was a side effect. She said no. This is why I don't fully trust people in the medical field. I brought my test results to show a cardiologist and I got a nurse practitioner. At least she knew about the disease a bit. She was saying I just have to find out what my triggers are. She gave an example of spicy food. Someone she knows has our condition and ate spicy food and set them off. This too happened to me months ago when I ate some peppers. But I was so dizzy and uncoordinated yesterday, I looked like a drunk person I'm sure. The discouraging part about this is, I usually bathe this way. Lay down in the tub with 2 or 3 inches of water. I can't handle anymore warm water or I feel Ill. I lay there and relax. Then I get up and shower. I guess I can't do that anymore. The discouraging part about that is my condition must be getting worse. I guess....or maybe it was just a bad day. Thanks for the replies guys.
  7. So I was laying in the bathtub for about 20 or so mins. I felt decent other than a headache. I get up to wash and I couldn't. My balance and coordination was way off. I crawled to my night stand in panic and took a medicine that starts with a M. Supposed to help with that and bring blood pressure up. I felt like the room was spinning. I've had these feelings before but not this severe. I didn't want to go to the hospital but the spinning feeling wouldn't go away. I put on a shirt and pajamas. My wife arrived home and I told her what's going on. She was urging me to go. The spinning wouldn't stop. I thought I was going to pass out. It is by far the scariest symptom of this disease to me. I eventually gave in and I got taken to the hospital. My blood pressure was high but everything else checked out which I knew would be the case. Especially since I took that one particular medicine. The NP actually knew about the disease. The spinning went away but my balance was off. I had to lean against the wall to give a urine sample. There was really nothing they could do for me. So I guess a question is, when is it time to call an ambulance? The new symptom I felt was when I was at the hospital. The whole duration I was there, my scalp was tingling as if the skin had fallen asleep. It even went down the left side of my face for a few minutes then went away and remained tingling on my scalp. I got home and was determined to shower. I almost fell but I made it. Now I'm in bed fatigued and discouraged.
  8. I'm feeling better at the moment. Thank you. I know I'm not getting sick. At first I thought man I'm coming down with something. Then it goes away. It's very low grade fever. I don't know the actual temp but I have always been hyper aware of when I have a fever. And it always comes with aches. So it's happened a few times in the past few months. I think my body just can't do much activity at all and sometimes gives me a fever for some weird reason. I'm still recovering from Mondays doctor appointment. I'm feeling a lot better but those first 2 days after were brutal. Not just with the fever and aches which actually wasn't that bad but a sickness I can't describe. A sickness I've never felt until my body completely broke down this past September. I was just sitting here talking to my wife how I miss my teen years. I was always working out and playing basketball. Full of energy and strength. Sigh.
  9. I still feel a fever. It's like it comes and goes. It's back.
  10. I will bring up the autoimmune stuff to my specialist. What autoimmune disease were you diagnosed with if you don't mind me asking? Meds I currently take. Carvedilol, alpha lipoic acid, Lisinopril hctz, midodrine, Xanax. I think that's it.
  11. I felt feverish and achy and body pain. Then my wife just woke me up because the car tire was flat. So I inflated it. Now I'm sleep deprived and nauseated lol. But yeah I get random fevers. Low fevers, nothing bad but I can tell I have a fever, aches. I can't remember if being out of the house for awhile is triggering this or it's random. I've felt horrible since my doctor appointment. Not just in the fever department. Feel like I'm recovering in the hospital somewhere.
  12. I was out for 2 hours Monday because I had a doctor's appointment. And I am feeling tortured in recovering. It comes in waves. I have a small fever. I notice I get small fevers here and there. Sort of feels like the flu is coming on but never does. It's hard to sleep feeling so ill. Any idea on what this means? or am I just screwed up and nobody knows and it's part of the game? lol.
  13. I struggle with heat intolerance so bad i ride in 30 degree weather with no heat on. I want to turn it on but when I do, I get Ill and adrenaline overload. Feel like throwing up. I have central heating and air, I also have a window unit. I run the window unit year around. When the heat comes on, the heat makes me so sick. The air conditioner makes it manageable. I'm pretty new to all of this so I don't know what helps heat intolerance if anything. Not looking forward to Summer.
  14. I think some people have a misunderstanding of what I'm saying. I could be wrong but I thought the burn you feel when exercising is lactic acid. I'm not talking about muscles being sore. I'm talking about the burn you feel when you are working a muscle out. My legs/arms were burning for 2-3 days straight as If I were right in the middle of a exercise. Not sore. And it was brought on by a minor task or what use to be a minor task to me. I was just fixing a couple pieces on a bed frame. I felt sick throughout because I was doing it. Then the burning came on and lasted a long time. This happens whenever I do anything almost. Sometimes it comes in waves of intensity. As if you are in the middle of doing situps and can't do anymore because the burn is so strong and my legs feel like giving out.
  15. Thanks for supporting my thoughts. Totally didn't mean to offend anyone. Trust me I know I'm screwed up in the head. I can't talk about anyone lol.
  16. It is not to be taken offensively. We both have brains but different hormones. And that's why women are better at things than men and the other way around. There is a difference between men and women. Men, we struggle with pride. So yes, that could be why it took so long. And that's the same reason I didn't get taken seriously for a long time. And sometimes people are working in the wrong field. Men and women aren't the same gender. There's differences and that's okay. It wasn't mean to be offensive so I apologize for offending you.
  17. It's funny because after I made my post last night I took 2 things out of the refrigerator and left them on the counter. If it weren't for me going back for water, I would have forgotten them. I do this number all the time.
  18. I'm 31. Not sure when it officially started. But I'm suspecting the major symptoms started hitting me early 20s or maybe even 19. At least fatigue and heart palpitations. Then 2017 was the first time I fainted. 2018 is when I've become basically useless and still basically can't do much and suffer daily. We are suspecting mine is genetic and passed down. My dad has mild symptoms of what I go through. He can still function normally.
  19. No expert on this period talk but can't you take birth control pills to help reduce the symptoms? Anyways don't feel bad. I'm 31 and get scared that I'm getting dementia. I forget stuff everyday. I say ok after I wash my hands I'm gonna go get some more toilet paper to stock up in the bathroom. Then I forget. I do that type of stuff all the time or basically everyday. My memory is awful. I forget things that are told to me. I forget stuff that happened. I even downloaded a phone recorder app to help me remember important stuff. I re ask questions over and over to people. I'm telling you my wife has been mad at me our whole marriage because she thought I wasn't listening to her. Now we know why I can't remember a lot of stuff. She's backed off about 95 percent lol. The other 5 percent is she's still a woman and sometimes still uses emotion over logic. No offense ladies lol.
  20. It's the same burn u feel when u do any exercise long enough and u start to "feel the burn". At times it's made me feel like woah I gotta sit down asap before I collapse (non fainting). It's been 48 hours and my legs are still burning as if I'm working out.
  21. I mentioned this to my specialist back in February. She didn't even really comment on it. But it's happening any time I do much of anything. I still feel it in my legs. Not as extreme but it's there. And I don't mean my legs are sore I mean they are burning as if your stomach would while doing 50 situps. My job required me to walk all day. No sitting. 8-12 hours. So I was definitely in walking shape but ever since the collapse at work back in September, I've been experiencing all these weird extra symptoms and my body just broke down since then. Just trying to find answers to put me on the path to a better quality of life. Thanks for the information.
  22. If I'm not mistaken, lactic acid is the burn you feel when exercising. I've been feeling this burn for over 24 hours in my arms and legs since I fixed one of our bed frames yesterday. It feels like I'm constantly exercising. My pupils are dilated so I know my adrenaline is flowing and I feel so bad I'm about to take pills to make me sleep because I'm suffering. I was wondering if there is a connection between adrenaline and lactic acid.
  23. I've had this symptom for quite awhile but I wasn't sure if it's related to this disease. It happens more when im lying down on my Back. My head feels like it's floating in water and there's a gentle wave or something. Is this a common symptom? If so what is going on?
  24. I've been getting on @Pistol's nerves. Thanks for putting up with me. More from me to come lol.
  25. I was on mestinon for about 3 months. No positive effects. My specialist took me off and put me on carvedilol. Only slows my heart rate if I do nothing. It's helped my palpitations I feel like. I mean i still get them but thus far that's the only positive thing so far in my treatment of this disease. Pretty depressing so far. I can take a hint of caffeine here and there. Otherwise I'm shaking and feeling Ill. Funny because 10 years ago I'd throw down energy shots and feel amazing. I think I actually drank a bit of coffee and a 12 oz Coke when I made this thread. My wife had a shingles outbreak plus she has other health issues so I've been going overboard this week. And the way I felt scared me. I've rested today so I feel better.
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