Hi - New Here

[Guest malosp]

Hi everyone,

It has been a long 9 months for me. Very bad viral infection (they think mono/cmv) in June 2005. Swollen glands, earache, sore throat over 2 months. Appeared to go away and then bam...fast heart rate at weird times like after standing, or just sitting. Sweats, fatique, exercise intolerance, dizziness when standing. Weird blood pressure changes....low or high.

Heart tests normal, all typical labs normal...not one doctor ever suggested dysautonmia including two specialists a cardiologist and a infectious disease doctor. I found out what I think I have by research. I saw a article about "irritable heart/soldier's heart" as well as an article about "dysautonmia" by Dr. Rich/heart disease article and it all made sense.

I remember telling the doctors I didn't think it was my actual heart but that I felt my nervous system was out of whack...I felt wired/tense like my system was on high gear, I had sweating & paliptations at night, the fast heart rate at inappropriate times. I would be sitting guietly and my heart would go over 100 and then I'd be walking and my heart rate would be 80.

Two general doctors thought it was all in my head. "Are you stressed" they both asked. Boy, did that piss me off. Of course I am stressed, I have been sick for over 8 months and no one can find out what is wrong.

It wasn't until I read some articles on dysautonomia that it made sense. I have a medical background and I really believe I am right in my own diagnosis.

And you know what? A lot of specialists will not even see you without a referral from your general doctor. So I couldn't even go to a rheumatolgist because she wouldn't take me without a referral. Well my doctor doesn't think I have anything wrong because all objective data is normal so he would never send a referral.

Well, I work in the medical field (not a doctor) and I couldn't believe that because they couldn't find anything they claim it must be stress. I have never in my entire life been sick till now. You would think that would clue them to the fact that I am not a hypochondriac.

So I am looking for some comfort from other people that may have gone through what I am going through before they got diagnosed. It is a long road.

I guess my question is? Can it get better? Do some people with dysautonomia after a viral infection improve?

And I guess even if I don't get better, I'd at least like a diagnosis.

[MomtoGiuliana]

Welcome--hope you get the answers you need shortly. Yes, post-viral POTS has a good improvement record.

Katherine

[Dizzy Dame]

Welcome! I'm glad you found us, but sorry you have to be here. You'll find we're a very sick but friendly bunch.

Yes, post-viral and/or sudden onset POTS/Dysautonomia has a good improvemnt rate. I've been told by Dr. Biaggioni at Vanderbilt (a Dysautonomia specialist) that post-viral/sudden onset has close to an 80% improvement rate. Of course it may take time. I've been sick for a little over a year, and have improved, but so slowly it's impossible to notice a day-to-day difference. However, when I look back, say, six months ago, I can see how much my quality of life has changed for the better.

I'd recommend contacting an Electrophysiologist. And if your PCP (primary care physician) won't refer you, find another PCP who will. I went through easily twenty doctors to find my diagnosis, and I'm still going through doctors after. Keep searching until you find someone who'se willing to work with you that you trust.

In my opinion, the best places to go for diagnosis are Vanderbilt, Mayo (I think Fla is the best) and Dr. Grubb. You can find out about all three places by searching this site, or doing a google search on the web.

Anyhoo, I hope you get a real answer soon!

Hugs,

Lauren

[Ernie]

Hi

Welcome aboard. Many of us have had the runaround with doctors and many of us have been told thta it's all in our head. There is more research going on so it is starting to be difficult for incompetent doctors to say that it's psychological.

[Clairefmartin]

Welcome!!

I would suggest bringing a few of the medical journal publications about POTS or dysautonomia to your doctor, mine appreciated it when I did, because he had never heard of POTS and never treated a patient with dysautonomia. He actually thanked me for them and asked to keep them so he could educate himself.

But... I have seen other specialists who won't look at literature because their ego's get in the way, but it can't hurt to try. I agree that you should look for en electrophysiologist, and check www.potsplace.com for a list of physicians who treat the various dysautonomias.

I was told I had anxiety for the last almost 4 years before it go so bad my Dr finally listened to me...so you're not alone!

Hang in there and don't quit till you find someone to help you

[bttrflyamby1981]

Welcome,

I know how you feel........I have not been dx yet and I think that in itself is frustrating.

I still feel alone sometimes because I don't have that test confirming "this is what I have".

Everyone here is very sweet and supportive and I hope you find some comfort in knowing your not alone.

I myself found 10 tests that the doctors have not tried so if and when I get insurance again, I'm going to go prepared.

Good luck to you,

Amber

[corina]

hi malosp,

i am sorry you have to be here, but glad you found us. this place is a great place to be.

the most common test to find dysautonomia is a tilt table test. do you think you could get that arranged?

good luck and welcome around,

corina

[Guest malosp]

hi malosp,

i am sorry you have to be here, but glad you found us. this place is a great place to be.

the most common test to find dysautonomia is a tilt table test. do you think you could get that arranged?

good luck and welcome around,

corina

Thanks everyone for the welcome,

It is comforting to know that I have some place to share my thoughts and fears. Thank you very very much for the posts that talked about post viral dysautonomia and possibility for improvement - Helped So Much. You don't know how much that helps me right now.

I think the hardest part is not knowing for sure what I have. It would be just nice to have a diagnosis so I can stop searching myself for what I may have. And it wasn't easy to even finally get this close to knowing what I may have. I think it took me 7 months to stumble on dysautonomia posts. I kept getting side tracked on the heart because a lot of my symptoms revolved around the heart. So I kept thinking I had heart disease. Of course all my heart tests came back normal.

Actually, finally got an email back from a doctor in Boston today that may be able to help me. I am to call tommorrow for an appointment but I guess the wait is late May or June.

I will defintely ask for the tilt table test and am willing to take every other test they want to throw at me. Because I just want to know what I have.

Again, thank you for the welcome.

I have so many questions:

For those who believe they have post viral dysautonomia...do you have night sweats? How about severe muscle aches and exercise intolerance? Do you get dizzy when you stand up? Does your heart rate go way up when you stand or do anything standing? I have never fainted but I find I have to lean against something in a short amount of time or I feel weak and light headed like I will faint. I find I much prefer sitting down. Sometimes I even have a racing heart when I change positions in bed. I am afraid to exercise because I am afraid my heart will go nuts or that I will faint. Any Insomnia?

Thanks again

[laila]

I too had to "self diagnose" and somehow stumbled across this site. Have been having symtoms for 10 years or more and been dx with anxiety/panic disorder, chronic fatigue, and fibromyalgia. I saw 3 cardiologists (one being noted by a doctor as top in the state) and have been treated with xanax for my problems, which actually does help some. But I recently found a new primary care doc who immediately referred me to a cardiologist in the group who immediately knew what I was talking about! I had a tilt table less than 2 weeks later and POTS was confirmed. I too always just thought "something" was not quite right. So even though there may not me an easy cure, I am happy to have a diagnosis. I have all the symptoms you have. Plus more... My worst time is in the morning sometimes I shake for hours. My doctor took all the info I had printed from this site and is so very kind. Maybe an angel eventually leads us to some help.......I kept telling doctors I felt like I was floating on an inner tube in the ocean they just would helplessly or haphazardly try to refer me out.....I was going to a large HMO group that is so overworked. This is a smaller practice and they stress "working with patients". I guess I finally got my angel. Good Luck and never give up.

[sstephan]

Hi

I self diagnosed as well. After seeing tons of specialists (you name it I saw it) I mentioned dysautonomia to my GI doctor. I had been diagnosed with "autonomic dysfunction" almost ten years ago. However, when I began to have other symptoms involving other body systems, I was told that the autonomic nervous system had nothing to do with it by my cardiologist. A little more research on my own and I presented this to my neurologist. She agreed with me and sent me to a specialist who diganosed it. This took over two years and I spent many days crying after leaving yet anther doctor's office who wanted to just give me a prescription for anitdepressents. Or better yet when I was pregnant my ob/gyn gave me a speech about how female hormones can bring about feelings of anxiety and depression. I firmly believe when navigating through the medical field you have to be your own advocate. Best of luck

[MightyMouse]

While self-diagnosis with any rare disorder is sometimes unavoidable, I would strong suggest finding a specialist who will work with you to figure out exactly what is going on. There are many disorders that overlap with dysautonomia symptomology. You may have better luck and rulling in or out at POTS or other autonomic disorder if you go to a doctor who is on the DINET physician list, or on the list of other sources like NDRF or the CFIDS folks. You can find links to all of these places in the "frequently aske questions" topic at the top of this forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

Good luck in finding answers. Nina

[Guest malosp]

While self-diagnosis with any rare disorder is sometimes unavoidable, I would strong suggest finding a specialist who will work with you to figure out exactly what is going on. There are many disorders that overlap with dysautonomia symptomology. You may have better luck and rulling in or out at POTS or other autonomic disorder if you go to a doctor who is on the DINET physician list, or on the list of other sources like NDRF or the CFIDS folks. You can find links to all of these places in the "frequently aske questions" topic at the top of this forum.

http://dinet.ipbhost.com/index.php?showtopic=1954

Good luck in finding answers. Nina

HI Nina,

I just noticed on your post it said you have celiac sprue. I have that too and am wondering that in some way that is connected to all of this. Lets face it lots of people get bad viruses but why do some go on to get something else like what I have - which is obviously some form of nervous system damage? It kind of is A+B+C = D. In other words maybe our nervous systems were already weakened by damaged caused by undiagnosed celiac sprue and thus were vulnerable to further damage by a virus or whatever. I had undiagnosed celiac sprue for a while and I know I had a lot of Vitamin B defiencies. I noticed that Vitamin B deficiencies can cause dysautonomia. Maybe we had some permanent damage that makes us vulnerable to new insults.

Have you ever heard of this? I guess I will look up what long term neurological complications there are with celiac sprue. Maybe dysautonomia is one of them. It is my understanding though that the peripheral nervous system can regenerate. So I guess that is the hope that mine will. I wonder if there are tests to check for neurological damage?

I will probably research that as I have a long time till my specialist doctor appointment which is May and June.

Well, have a good day and thanks for the post.

[MightyMouse]

My version of dysautonomia is genetic--celiac probably isn't related to having POTS & NCS for me. Also, there are so many possible causes of dysautonomia--I'm guessing that at this point you have read through the mechanisms and causes section of the main DINET site.

In your case, having a post viral onset gives you a better prognosis than many of us here. Most with post viral POTS improve over time--some may always have impairment, but in general, they get a bit better. And, some will recover completely.

If you can't find a good doc in your medical insurance network, you might want to consider doing what I did to get a Dx--paid out of pocket. I eventually got my insurer to cover 80% of the charges for my visit to the Syncope Center at Columbia Presbyterian in NYC, and the TTT that they did. In the long run, it was worth it for several reasons:

1. I had a name for what was going on, and validation that I wasn't faking it.

2. I had treatment options that helped to improve my day to day quality of life.

Nina