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trappedat20

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About trappedat20

  • Rank
    Advanced Member
  • Birthday 05/23/1993

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  • Gender
    Female
  • Location
    Nashville, Tennessee
  • Interests
    Writing,Acting,Arts and Crafts. I use to dance so I'm trying to focus on the interests I still can do.

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  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 still don't know what was up with that. I don't know if I really did have nerve interferance from my neck or if being on bed rest from PH caused dysautonomia that the gym helped or what. I will never understand that, but those symptoms just completely vanished but I still had the other symptoms which were getting worse so I figured I still had dysautonomia even though I now know the other symptoms like the heart rate problem was from PH. I was also passing out and having hypoxic seizures and stuff. A lot of the things that makes POTS patients heart skyrocket (bending over, reaching up, standing up) also made my heart skyrocket and so we kept the dysautonomia diagnosis even after the blood pressure problems and stuff went away because we didn't have any reason at the time to believe it was being caused by something else. If I did have dysautonomia early on, I don't anymore. I don't think PH can be an underlying cause of POTS but I do think that if you have severe PH that causes you to be stuck in bed all of the time that could cause you to have POTS since deconditioning can cause dysautonomia.
  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 me adderall and in June 2013 I started to feel like something was def. wrong with me and I felt awful. Between then and August 2014 when I got my Pulmonary Hypertension Diagnosis I progressed a lot! Once I started showing symptoms of it it progressed very fast. My problem is that I have the idiopathic type which generally has a poorer prognosis and I didn't realize I had it until I was already stage 4 and very very sick from it. This is why I'm saying how important it is to check it out if you feel like something is off because you don't want to wait until you already have Stage 4 of something that's very serious to realize something else is going on. Similar to other diagnosis's the earlier you catch it the better. Yeah, part of that is my fault. I got so frustrated with tests because at a certain point when they all kept coming back negative I was so scared of being called a faker and going through meaningless tests that I gave them a hard time. They did all sorts of tests but surprisingly the one I fought them on so much was the cardiac ones which were the ones I needed to get my diagnosis. Thank you! I hope the medicine keeps you from ever getting to the advanced stages. I'm so happy for you that you got to catch it early.
  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 then during the second one it showed a lot of damage. Pulmonary Hypertension progresses very fast without medicine. If it really concerns you you can ask for one again and tell them you're trying to be thorough. I also had a murmur that my doctors were able to pick up when listening to my heart beat. There are plenty of resources out there if you want to look into it, but I really hope that's not the case for you.
  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 August 8th 2014 and I'm now on medicine. Brief thing on what Pulmonary Hypertension is so you understand. It's where the pulmonary arteries become narrow and blocked so that it's hard for blood to travel from your lungs to the right side of the heart. This makes it hard to breath and causes the right side of your heart to overwork itself (eventually to the point of failure) in an attempt to receive oxygen rich blood. It's a very serious and progressive terminal illness. It's rare. Mine is idiopathic which is even rarer. There are only 500-1000 new cases every year which is why they didn't even consider it until they found damage to my right side of the heart. I will never know why when I first got sick my blood pressure did crazy things and I had temperature regulation problems and blood pooling. They went away in January 2014 when I started going to the gym and the chiropractor. Who knows maybe I had dysautonomia on top of it from being on bed rest for months from the pulmonary hypertension. I'll never know. Those symptoms went away though and I had more and more trouble breathing. I started having 4 HYPOXIC (not neurological, but from lack of oyxgen) seizures a week in March that caused me to go to the hospital. Around that same time I started having a twitch in my right leg which I later found out was nerve damage from all of the seizures (your body does't like to be without oxygen.) That was around the time I started to wonder if it was really dysautonomia. My symptoms didnt match up with everyone elses's like it use to when I first started to get sick. I was scared to admit to myself that we had been wrong this whole time though, and I was scared of being told that if it wasn't dysautonomia then maybe I just had anxiety and needed to suck it up or something (because I knew that wasn't the case.) I was scared of not having a diagnosis and of just being sick. Then I wouldn't have a community of people who understood how I felt, or a medicine I could try, or a diagnosis that I could say "well I can't do this because I have this." So I just ignored those feelings because If it wasn't dysautonomia nothing else really made since to me of what it could be. Here are some of the things that I thought explained the dysautonomia, but actually fit with my diagnosis of Pulmonary Hypertension. 1.) My insane heart rates. My heart was fast at rest and would speed up so much from just the smallest amount of things. That's a typical dysautonomia thing and I didn't know of other conditions that caused it. Pulmonary Hypertension causes a fast heart rate though because your heart works so hard to try to recieve oxygen, especially when you're doing more strenuous things (which can be as simple as standing, rolling over, or walking a short distance.) 2.) Adderall helped me feel so much better. I know some people with dysautonomia feel better with stimulants and some feel worse. Adderall made it so I could do much more and felt much better. I thought that was another thing that explained the dysautonomia. The reason it made me feel better was because it was causing my heart to overwork itself enough to compensate for some of what the pulmonary hypertension did, but it was esentially speeding up the damage to my heart because it was overworking it on top of it already being overworked. 3.) Creatine knocked my seizures back from 4 a week to 1 every few months and made me feel better. I thought this was because I had Mitochondrial Disease and that was the cause of my dysautonomia. Creatine is part of the Mito cocktail. Creatine increases nitric oxide though which would help someone with pulmonary hypertension receive oxygen better. 4.) Trouble breathing along with the fast heart rate. We thought this was because my heart was going so fast that it wasn't pumping efficiently and that's why I struggled to breath, but in reality it was the opposite. I was struggling to breath from the pulmonary hypertension and the fact I was struggling to breath caused my heart to speed up so much. Shortness of breath and difficulty breathing is common with dysautonomia too so I didn't really think too much of it. 5.) Excessive Fatique. Was explained by the pulmonary hypertension. 6.) Lightheadedness and dizzyness. Was explained by the pulmonary hypertension. 7.) Passing out. Was explained by the pulmonary hypertension. I am by no means suggesting anyone on here has pulmonary hypertension. It's rare and the two are often not mistaken for another but that just wound up being what my diagnosis is. I'm sure most of you on here have dysautonomia too. What I'm saying is if your diagnosis ever feels off or you ever question it, allow yourself to question it. Don't write off your doubts because your scared of being without a diagnosis. It could be something very serious and it could be life or death. When I first started questioning things a little bit in February/March I wrote it off because I couldn't think of anything else it could possibly be, and I was scared to tell my doctors that. Everyone (including myself) found ways to make sense of my symptoms and why it was still dysautonomia though. I was progressing very fast though. The more I progressed the more it seemed less like dysautonomia. It was scary how fast I was progressing. People with pulmonary hypertension progress very fast and only have a year or two to live without medicine. The funny thing is, they tried to give me an echo a few months prior to when I got it done but I was the one who took so long to do it (I think I even came on here and complained) because I kept saying it was dysautonomia and my heart stuff was related to dysautonomia and I didn't have a heart problem and they were being so stupid and doing meaningless tests. It wasn't until that echo that we picked up on the damage and started to question my diagnosis. With pulmonary hypertension early diagnosis is key and I let things progress because I thought I knew better than everyone else and I didn't want anyone to question my diagnosis. I was so scared of them saying it wasnt dysautonomia and that they did so many tests already and it had to be anxiety so I should just go home. Sorry for taking sooo long to write this post and update you guys. My point is, don't become a know it all who refuses to take any tests because you know you don't need it. Maybe you need it, maybe you don't. But that test that you think is meaningless could be the test that picks something up. Also, if anything ever feels off it's okay to question your diagnosis. I'm not just speaking about dysautonomia, but with any diagnosis. If you're progressing and things start to feel less and less like what you originally thought it's okay to bring it up to your doctor and possibly go back to the drawing board and get more tests. Love you guys. Even though it wasn't dysautonoma after all, thank you guys for being so supportive of me over the past year and a half. Take care
  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.
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