trappedat20

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.

@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.

@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.

@ 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.

@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.

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.

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

@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.

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...

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.

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.

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.

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.

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.

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.

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

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 makes them want to do an MRI because the echo showed a slight amount but my symptoms could be suggesting more? I'm also not sure if it's the result of my being sick and its proof that damage is already being done. It's that chicken or the egg thing. I don't know much but why do you guys think? There's probably no way to know if it's making me sick or the result of being sick from looking at my results.

@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.

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.

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 understand anything. I don't even understand the possible things that could be wrong with my heart that could cause my symptoms. Starting to think it's another stupid test though and that they will never run out of things to test me for. Also have an MRI this Wednesday for my neck and I absolutely despise MRI's. I feel sooo claustrophobic because of my oxygen problems. On a side note I'm depressed about this whole thing. I'm so mad they didn't at least try to treat the crazy tachycardia. That's the thing though. Nobody ever treats me even when there is stuff they can do. All they do is run more tests and I have to wait until they run out of tests I guess. I'm so sick and idk why nobody will treat any of my symptoms. I feel like nobody cares how sick I feel of what happens to me because nobody has tried to get my o2 up or my heart rate down at the least.

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!

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.

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?

@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

@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 make my heart like 150. My body just doesn't like to move. I have tachycardia even sitting down though. My resting heart rate is usually between 100-115 whenever I'm looking at an 02 meter. It sometimes does go to the eighty or ninety's but normally it averages close to 100. Then whenever I do anything physical it starts to climb. I do weight lift 2 times a week which is a struggle for me but the fact I get to take breaks between sets makes it doable. I recently started hula hooping a few weeks ago too with a weighted hula hoop and if I do it 5 minutes at a time I'm actually okay surprisingly. I won't question it though lol. I did the recumbent bike before I got this sick and unfortunately it didn't make a difference. I still wound up progressing and I progressed so much that I couldn't even do that. I know you guys can't give medical advice but from your experience does this sound closer to POTS or Innapropriate Sinus Tachacardia. Keep in mind I haven't really had blood pressure problems in several months. I have all of the symptoms of both and the blood pooling and everything but my heart rate and oxygen seem to be the main thing that's killing me so much and causing me so many problems. For all I know the oxygen could just be a response to my heart rate (that's what my husband thinks.) Can you have both? If your resting heart rate is at least 100 what's the difference because I feel like I meet the requirements for both. My heart beat increases about 30 beats per minute when standing (sometimes a little higher or lower) but it's always above 120 when I stand (it was 130 for the test) but it doesn't matter if I'm sitting or laying down. If I'm laying down and roll over that will be enough to make my heart go too fast so it acts inappropriately both when I'm laying down and sitting. So it's not just a postural/ when I stand up thing where it acts inappropriately. I'm not really asking for a diagnosis because I know you can't do that but I'm pretty confused about where I lie since I pretty much meet the requirements for both and I'm not sure what the difference is in a case like this. My doctors don't know about sub diagnoses enough to be very useful either.