Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by trappedat20

  1. I'm feeling better, but not anywhere near normal. Maybe when I can get my medicine raised it will help more. The condition isn't curable. It's progressive, but I'm hoping they come up with a cure.
  2. @momandmore Yeah, I think we all understand what it's like to feel burned out from testing. Now I realize that the test you miss could be the test that catches something that could save your life. @Goschi Earlier in my post I explained things that seemed like POTS symptoms that wound up being explained by Pulmonary Hypertension. Things like my heart rate would sky rocket every time I did the smallest thing. I originally had blood pressure problems and temperature regulation problems as well as blood pooling that went away in January 2014 when I started going to the gym and the chiropractor. I
  3. @momandmore They said I've had it for years before I finally showed serious symptoms. I had a few vague symptoms over the years that never disrupted my quality of life and I was able to write off as being tired or out of shape kinda stuff. I had my first seizure January 8th 2013 which was also my first serious symptom that something was wrong. Between February and May I was on adderall which kept me from feeling the symptoms (even though I now know it was bad for me) until night time when it wore off and I felt really sick and then I moved to be with my husband and didn't have someone to give
  4. @ xRobin Thank you for making me feel better. It went from 4 times a week to once every few months from all of my medicines combined, and now that I have oxygen if I use the oxygen it will prevent me from having a seizure because my oxygen never drops low enough for it to happen. If I do something that makes me sick and forget to wear the oxygen while doing it someone will grab it for me and I'll recover quickly before it ever turns into a seizure.
  5. @Raisin I think you should def. keep it. Even if it's wasted time and nothing comes out of it, it's better to be safe than sorry. It feels so weird to stay now since I don't have dysautonomia and it's a dysautonomia forum. I don't know what I'd talk about lol. This place has been so wonderful to me and I love the dysautonomia community. You guys are wonderful. You guys will always have a special place in my heart. God bless.
  6. Thank you for your support guys. Again, I'm so sorry it took me four months to update you guys. I just felt embarassed because I was so adament that it was dysautonomia and my doctors were being stupid by doing tests for things I thought I obviously didn't have that it knocked me back a few notches. You guys have been so supportive and I'm so grateful that I had you guys during that period where everything was so confusing. I wish every one of you the best of luck in life! @dkd I had an echocardiogram two and a half years prior to the one that picked up damage that was perfectly normal, and th
  7. It's taken me 4 months to gather the courage to write this post. Maybe it was embarassment for not realizing I was misdiagnosed. I'm not even sure if anyone remembers me. The last time I was on here I talked about how an echo picked up a lot of damage and weakness to the right side of my heart and I needed a cardiac MRI. The MRI wound up showing that I also had enlargement to the right side of my heart. After that I went in for a right heart catherization because they suspected pulmonary hypertension. Normal pressures are 8-20. Mine was 90! So I got diagnosed with severe pulmonary hypertension
  8. @lewis I hadn't but I will ty. @robin my ekg was okay and it was my echo that made them them think I could have it since it showed tricupsid insufficiency along with my symptoms. Ty I will def keep u guys informed. They forced me through a stress test to try to get my insurance to cover oxygen but I only lasted 3minutes before they forced me off.
  9. Yes my team has been really trying to get things taken care of. My neurologist said to see him every 6 months now that my neurological symptoms are under control and wants the cardiologist and pulmonologist to handle the rest of things. I wonder what that means as far as whether I have dysautonomia...
  10. How did your test go Robin? I agree it's scary to look things up. You guys are right that it's good the are looking into all of this. My MRI is the 25th so I'll have to patiently wait until then.
  11. No I don't have the MRI today because they are a little backed up. She's suppose to call me back today with the date. Thank you guys. You're right. I don't even know why I'm worrying about whether or not I have dysautonomia right now. I kept saying my heart was fine and all of these doctor are stupid for doing all of these tests but apparently they were the smart ones after all. I can see why assuming everything is dysautonomia only is dangerous.
  12. My echo showed 45% tricupsid valve insufficiency. It showed that the right side of my heart was weak and had regurgitation. They are having me do an MRI of my heart and now they are even looking into pulmonary hypertension. I'm really scared because that has awful mortality rates and I don't want that. I felt like I knew what was going on and if it really is all of that then who even knows if I have dysautonomia anymore. It would make my biggest symptoms have so much overlap that I might not even have it. I'm sort of freaking out atm.
  13. I'm glad to know I'm not the only one who has their heart rate drastically increase just by rolling over. I've been thinking mine is IST too as its not just postural it's whenever I move at all.
  14. 95-115 sitting. 130-180 standing and sometimes from rolling over. 180-200 walking. Around 250 from stair climbing. So far nothing has helped me though.
  15. No I didn't have either as a child. The weird thing is a few years ago I had an echo before I got sick and it was perfect. I wonder if that's why they are doing the MRI. Because the echo showed SOME regurgitation which some would not cause symptoms. Although if my symptoms could be explained by this then that would mean A LOT of regurgitation so I think they are making sure they can see the whole picture a nd that my symptoms can't be explained by my heart. Yes I think they are going to have me get an echo every year too.
  16. It's just that like 2 years ago I had an echo and I didn't have any which makes me think it's related somehow. I could be grasping at straws though
  17. So finally got the results of my echo. There's some regurgitation in one of my heart valves and one of them aren't working hard enough/efficient enough. She said it's not that bad atm and they just want to keep an eye on it. So I guess that's why he's thinking of doing a heart MRI but wants to see what my pulmonologist thinks. I'm actually really confused right now. They said it was slight so I don't think it would be causing my problems with oxygen and seizures from lack of oxygen and insane tachycardia. Maybe if it was more severe but not from a slight amount. Although maybe that's what make
  18. @xrobin my husband is calling today and he's more assertive then me so hopefully he gets some answers. That's true too. Maybe my echo is fine and that's why he didn't say anything and he is just being thorough. I still wish they'd give me something for the oxygen and tachycardia though. @looneymom nope. That was one of the first things I thought back to to make sure when I got sick but I haven't gotten a bad virus for 4yrs and didn't even have a regular cold around when I got sick.
  19. Thank you for the message. I've been feeling very low today and your message helped. I didn't realize there were more tests either. They never called back either which was upsetting. My husband is coming with me to my pulmonologist on the 14 th and he is more assertive then me so I'll ask him since my cardiologist blew me off today and doesn't have any plans apparently. I doubt insurance will even care though. I'm just so frustrated with the medical system today.
  20. My cardiologist barely talked to me about my test results for my echocardiogram and stress test. He is thinking of doing an MRI of my heart though but he wants to see what my pulmonologist thinks first (they are good friends) and then he'll see me that same day. That's on July 14th. I looked it up and it said that's often needed if they need more info after an echo but he didn't tell me anything. I called the office 2hours ago for my results since he didn't tell me and I'm still waiting for a nurse to call me back. I really wanna take a nap and don't know if I should wait or not. I don't even
  21. Get an 02 meter. It will tell you what your oxygen is. I have that same problem and know exactly what you're talking about. A lot of us have shortness of breath but when it's really bad I know what you're talking about and you need to get an o2 meter to put on during those times to see what your oxygen is. Best of luck!
  22. I know it would have been amazing if they could have seen how bad it gets, but hopefully my results from very little activity give them an idea of what would happen if I did more activity. Yes, I have quite a lot to discuss with my doctors hopefully everything goes well. Wish me luck.
  23. Okay what do you guys think of this I just found it online. " Symptoms of IST PalpitationsShortness of breathExercise intoleranceFatigueResting heart rate of greater than 100bpmSleeping heart rate of 70 – 90bpmMinimal exertion, heart rate will rapidly reach 150bpm Potentially related symptoms: Drop in blood pressure upon standingBlurred visionDizzinessSyncopePre-syncopeSweating" I seem to fit all of that and my test shows that so I wonder if I should mention it to my doctors?
  24. @sue1234 Yep my levels are perfect for both. I've been checked for all of that stuff and it all came back normal. This didn't start until around the time I got sick so I think it's all part of the dysautonomia. That's why I'm kind of wondering if it could have Inappropriate Sinus Tachycardia
  25. @IceLizard Ikr. Despite the fact I didn't meet the oxygen requirements or get to have a seizure I think the test results being like that after a brief walk can make them see why something as strenuous as stairs would cause my oxygen and heart rate to be much worse and cause seizures. They always believed me about getting this sick but now I feel like I have proof and they can at least see that my heart rate and oxygen have crazy responses to normal things. Unfortunately even if I'm sitting or laying down if I do physical activity my body still misbehaves. Even rolling over in bed is enough to
  • Create New...