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trappedat20

Sometimes It's Not Dysautonomia...

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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

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Thanks for giving us an update and I'm glad you finally got to the bottom of what was really wrong.

I struggle everyday with wondering if there is something else really wrong that I should be getting checked out.

I have even asked my cardiologist about pulmonary hypertension, but he didn't think so. I had a transesophogeal echo in Jan 2013 and it was normal, but that was at the start of my symptoms.

Take care of yourself!!

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I am glad that you and your doctors were able to get to the bottom of this. Thank you for sharing.

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Yours is the perfect cautionary tale. We have periodically had members who find that one symptom or another is actually being caused by something other than dysautonomia. We should all remember that the various forms of dysautonomia are often not the root cause of our illness and we need to be thorough in our search for answers even when doctors close doors on us.

I'm so glad to hear your are properly diagnosed and being treated effectively. I wish you continued improvement.

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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.

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Your words are very wise and I thank you for sharing. I was actually thinking about cancelling a pulmonary consult because I don't want to hear, " well, you are just deconditioned". Because of your input, maybe I will keep the upcoming appointments, even if they do end up saying that.

Very important, though, is the fact that you are still dealing with illness and you have made friends here so you shouldn't leave us! Your words kinda sounded like a goodbye? I hope not. We are all like the island of misfit toys here. All different but we share a common ground. Santa will not forget us. We just have to form a family here and you are one of us. God Bless.

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@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.

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Hey, thanks for updating us.

I don't think you should be hard on yourself about putting off tests or not realizing that you had been diagnosed. None of us want to go in and get poked and prodded! Given that you had an ambiguous body of symptoms that seemed to fit one set of criteria, it makes sense that you would feel further examination was stressful and unnecessary. I understand how frightening it is to bring up new symtpoms to doctors, as well.

I hope that you are being adequately managed now with medication and have good doctors who will follow up with you. How are you feeling? I remember you were having seizures when you climbed stairs, and turning blue. I hope that is in the past for you.

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@ 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.

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MakeMeErised, I have mild pulmonary hypertension. I have had it for many years and it has never progressed, very thankfully. I've had several echocardiograms and ekgs and I'm fortunate that my heart has not changed. I think the reason behind mine is two mildly leaky valves. None of the cardiologists I've seen have been worried about it, but reading your story makes me understand the importance of regular echos. Because of my valves, I will have to get them every couple of years anyway, but if I ever have a worsening of symptoms, I now know it's something to check on.

My grandfather also has pulmonary hypertension, but I have no idea how long he's had it. He's in his 90s and doing pretty well. I hope that encourages you.

It's surprising that doctors would give a dysautonomia diagnosis without thorough testing including an echo. Over the years, I've had so many tests to rule out every possible condition, the heart tests and the blood work to check for tumors, endocrine disorders, autoimmune diseases. I asked my cardiologist if a my heart valves are the cause of my POTS symptoms but he gave me a firm no. Instead, he suggested that I probably have an underlying disorder like EDS that is caused both my heart valves to get leaky and my dysautonomia.

I hope the medicine prevents any progression, improves your symptoms and makes you feel better. Thank you for sharing your story. It's an important one for us to hear.

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@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.

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I'm not medicated for PH so anything could happen. I already know that anything could happen with a valve, too, since I've heard stories of those suddenly getting much worse. My doctor doesn't expect that to happen so I just hope for the best.

I'm totally with you about getting burned out from testing. I've been there with my oldest daughter. We went through a period of having every test turn up something that would require another test to clear up. It made me want to put off everything. And there are certainly things I delayed when I didn't feel like I could deal with one thing more. They were almost always things for myself since after I'd take care of my kids I would not always have the mental or physical energy left for anything for myself.

Thank you for sharing your progression. That could wind up being helpful information for me or someone else here.

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Hi MakeMeErised,

I am really sorry to hear about your diagnosis - however, properly treated, PH can be kept under good control and patients can lead a long and mostly symptomfree life!

I do know a good friend of my grandmother, who has had PH for many decades and is now in her early eighties, doing quite well! So stay positive!! In addition there is much research going on for PH at the moment, You will definitely get lots of benefits from that in the future!

Just one question: Why did you (and your docs) originally believe you might have dysautonomia? Do you POTS? And if so, may PH be an underlying cause of POTS...? I have never heard about that (?).

Alle the best for you and don't worry!! You will be treated effectively!!

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@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.

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4 months is not so long. I spent 3 months in inner ear rehab for no reason, also trying to explain my symptoms. Other people here have had the wrong diagnosis for years. Are you feeling better now? Is your condition curable?

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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.

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Really glad to hear from you and know how you are doing. Have been looking for a post from you for a long time to see how the results of your tests came out. Really glad you got those tests done because back when we were discussing Mito disease your symptoms, while initially sounding like it might fit, certainly didn't when you were getting sicker and sicker. So I am very relieved to hear that you got a correct diagnosis and some treatment.

Are you on oxygen? My cousin with Pulmonary Hypertension has been on it for many years and it seemed to help her. Her cardiologist just told her last month that she could stop using it and she's happy to be free of it now.

Thanks for posting and letting us know how you are doing!

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Thanks for this post. My O2 levels have read low that last couple of times I was at the doctor. I have Sjogren's and antibodies for RA, so now I am wondering if I ahve an autoimmune lung problem instead of or in addition to POTS. I am not sure what to do but I feel that I need to find the right doc for this. I'm glad you found your answers! :)

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MakeMeErised- I have an uncle who has this diagnosis and it is very serious and scary. I do not know much about it though. I am sorry to hear you have this diagnosis. For my uncle I am wondering what medications/treatments can help to control it. Is there a major center specializing in this? I hope you do not mind my asking. I understand it to be rare.

Nymph-my cousin has Sjogrens, and although I have no reason to suspect I have it except that it rarely occurs with POTS and can be genetic. I wondered if there are any basic tests that indicate it like an ESR as I have had some basic tests for a lot of things in the process of getting a diagnosis of POTS though not a Sjogren's antibody test or RA antibody test. Most of my basic tests came back normal.

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While you were going to the chiropractor, do you think they helped you in any way. Can you speak more on what symtoms you think they helped you with.

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Hi Potluck,

ESR or CRP may be raised in some Sjogren's patients, but it is a very individual thing. Mine always stay low, even when I feel yucky.

Have you had an ANA? A positive ANA may indicate that further tests are needed for specific Sjogren's antibodies. However, many people with Sjogren's do not have these antibodies, and even fewer who have neuro issues.

There is a new test, the Immco, that tests some other stuff, and finds people who ar eother seronegative. I have not had it yet.

Main diagnostic test is a lip biopsy.

Do you have Sjogren's symptoms other than POTS? Arthritis, dry eyes, mouth, or nose? Swollen parotid glands? Muscle aches? Fever, night sweats? Sensory neuropathies? If you have some of these then you should probably get checked out. Routine labs are usually normal.

Although there is a small genetic component to Sjogren's, it only slightly increases your chance with a 1st degree relative, and you could get something else, such as lupus or RA. But you could just have POTS for another reason. Are you hypermobile? That's genetic and can predispose to both POTS and autoimuune stuff.

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So guys, also diagnosed with dysautonomia,  my predominant symptom is extreme dyspnea.  However, mine all started with pulmonary embolisms.  Even with those resolving and trying every medication for dysautonomia under the sun (northera, midodrine, mestinon, florinef, adderall, desmopressin, ritux, ivig, and plex) my symptoms persisted.  Long story short I had a large ASD (atrial septal defect) missed for over 2 years.  I found it myself and demanded a TEE.  It was closed about 10 days ago and my most recent tests show mild right heart enlargement.  So now hoping it will go away and this is due to the asd and not CTPH.  But only time will tell.  I just want to tell everyone here that dysautonomia is not a diagnosis.  PLEASE TRY TO FIND YOUR ROUTE CAUSE!!

 

Internet HUG TO ALL!!

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It's definitely true that many conditions have overlapping symptoms and possible to be misdiagnosed.  Also true that dysautonomia has various causes. 

Unfortunately for many of us, our dysautonomia has a cause that is not yet understood by medical science.  It's possible to go to certain research university hospitals to have more testing done than would be done typically, to refine an understanding of a patient's dysautonomia.  This may or may not be helpful for patients.  My specialist recommended against more testing in my case.  He was confident I would improve over time with treatment and more testing just wouldn't yield more answers.  In my case he was right. 

Hopefully as research continues more will be understood about causes and mechanisms.

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Hey Ayl, you say:

> I had a large ASD (atrial septal defect) missed for over 2 years.  I found it myself and demanded a TEE.

How did you find it yourself? 

 

 

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