my doctor thinks I have dysautonomia - help!

[Clairefmartin]

Hello everyone,

I was wondering if anyone had any suggestions....I have been sick on and off for the last 3-4 years with rapid heart rate, dizziness, major GI issues, near syncope, tingling sensations in my hands and feet, shakiness, etc..... the list goes on. I have seen every specialist around with no results except to treat the heart rate issues, and finally when I went to an ENT he mentioned dysautonomia, and told me I was a text book case.

So - I researched it online and think I have POTS, I have every symptom on the list in some form, and I cried when I read it beacuse all these doctors have been telling me I have anxiety and IBS issues and no one has had answers. So I took the printout with my notes on it to my promary care Dr., and he agreed to refer me down to UVA to the autonomic lab there. My insurance denied coverage, and I just had some more testing and saw a new neurologist in order to get approval to go to a lab, and she said she didnt know what was wrong with me, and agreed to refer me to either Hopkins or UVA as long as I would consider the fact that it could all be anxiety related.

So - I was wondering if you all think I have POTS or its just anxiety...from my understanding dysautonomia can cause anxiety, but my only anxiety is related to my health!! Otherwise I'm fairly anxiety free.

I was wondering if anyone had suggestions with insurance, they are being horrible, and I am stuck at home on upaid leave from my teaching job because I was being wheeled out of the classrrom at least twice a week for the last few months. I know I have a right to treatment, I am on the verge of getting a lawyer.

Sorry this is so long - any suggestions woul be much appreciated!!

Thanks!

Claire

[Sophia3]

Sorry you are in the state you are in, and rightly so.

Though impossible to diagnose from a message board, you do seem like you might have symptoms of POTS.

Is it possible to get a doctor to recommend you for a Tilt table test? Have you had one of these?

And what does UVA stand for???????

If you were wheeled out twice in the last couple of months, did the doctors claim that was anxiety???

Read up on tilt table testing and demand one...especially if you are prone to fainting or near faints.

Lie down quietly for half an hour..check pulse, stand up..does the HR go up 30 BPM or more? That is just a tiny test...but you need a doc that understands gravity issues aka Orthostatic Intolerance.

[Lukkychrm42]

First off welcome- I'm so sorry that you've been to so many specialists who have been unable or unwilling to help you. That's a common, though unfortunate problem.

I agree, that your symptoms sound pretty familiar to me. I understand what you mean about the anxiety- I'm anxious sometimes, but that's sure not the reason behind all these symptoms! You've mentioned seeing specialists who have tried to address the heart issues- what medications are you on? I was put on beta blockers before being diagnosed, and they helped a bit but not a whole lot. Does that mean that you've been through a cardiac work-up? EKGs, blood tests, echo, and stuff like that? I also was referred to an ENT before I got a tilt table test who confirmed that although I've had lots of ear problems, my dizziness was not vertigo. if your insurance won't pay for the autonomic lab, have they denied coverage completely for that doctor, or just for "autonomic testing?" I think you should find someone who performs tilt table tests and have one of those done- it's the easiest diagnostic tool we've got, really. After you have a diagnosis, you'll probably be more likely to find someone willing to take you on (and although there are some doctors who will STILL be convinced you're crazy just because they're ignorant, that doesn't mean they all will!). It sounds like you're in the NoVA or MD area maybe? I see a cardiologist and dysaut specialist in Fredericksburg and Sterling, Dr. Hasan Abdallah. (www.childrensheartinstitute.org) He's technically in pediatrics, but takes on slightly older POTS patients.. I don't know if he's got an age cutoff though. At any rate, he might be willing to give you a tilt table test and/or refer you to someone who treats adults.

Also, having a diagnosis could help with insurance and legal issues... so hopefully something with your job and all that stuff could be worked out. I certainly hope so for your sake!

After being diagnosed, I came back home for the summer and was looking for local treatment . I didn't have much luck, and I stumbled upon the Drs at UVA, but I ended up going to Vanderbilt University as a research patient and then when I came back in February I've had some great luck finding a really good PCP and Dr. A for the dysaut stuff, and will be going to a GI in April, and a rheumatologist tomorrow! So I guess keep looking, and you'll find someone. I'm glad you stumbled onto this website!!!

[Clairefmartin]

Thanks for the replies - to answer both your questions, I had a tilt table test to see if I had MVP (mitral valve prolapse) almost 4 years ago, and the cardiologist couldn't induce fainting, but he said my heart rate went up, so he perscribed toprol. I don't have MVP, and this was way before I'd heard of POTS or anything like dysautonomia. I was on toprol for 2 years and was miserable - it made my blood pressure drop and I was tired and weak. I finally went off it, and figured out it wasn't doing much anyways, my rapid heart rate has usually been the big issue (until the recent severe lightheadness). I don't think he was looking for anything other than MVP, so I want to have the tilt table test again.

My heart rate is way up when I get up in the morning, and it pounds when I lay down at night. I also have been having this weird buzzing/vibration sensation before falling asleep in the last few month, almost like tremors in my upper body and head. It is really uncomfortable...has anyone else had this?? It can last for hours, and jolt me awake, and then my heart is pounding away once again. I ususally take a bunch of ativan to get through it - that's my doctors solution for everything right now! So the only med i take is ativan as needed, which is alot lately, and it doesn't take away my symptoms, but it calms me down. The thing that is so frustrating is that my symptoms keep changing, I'll have the intense heart rate thing for a few months, and then the lightheadedness for the next few months, and then on some days I feel totally fine. While I was teaching, I was on my feet for 8 hours a day and it was ususally very stressfull, and the constant movement seemed to make the lightheadedness and tachy heart stuff way worse. I would have episodes were my vision would start to go (like I was going to pass out) and the room would spin a bit, so I'd sit down with my head between my knees and couldn't sit up or stand of almost an hour. My legs and arms turn this purplish color too...and the my heart rate always went way way up when this happened. Thats what got me wheeled out of class...and then I started having tremors and hot/cold flashing with the rest of the symptoms. It sucked!

Anyways....that has recently stopped, I haven't had an "episode" in a few weeks, just the tremors, fatigue, and vibrating sleep thing. Is this normal with POTS? Do symptoms change?

Thanks for all your help - it feels good to talk to people who can relate!

Forgot to mention luckycharm, I am in the Virginia Beach area, but my family is in the NoVa region. No one in southern VA treats or deals with dysautonomia, UVA was the closest, and Hopkins was where the neurologist suggested. Whats the deal with Vanderbuilt? I have been on their website, but it seemed like they only do clinical studies - do they actually test and treat patients?? Thanks!

[Ernie]

Hi,

Welcome aboard.

Ask for a repeat TTT and consider stopping your beta blockers.

[kmpower]

I think a lot of us were misdiagnosed as anxiety or panic attacks until someone took the heart rate and blood pressure issues more seriously. Of course we feel anxious if our heart is jumping out of our chest at a million miles a minute!

I am glad you are getting closer to understanding what is happening. Welcome to the forum.

[UnicornIsis]

I'm from west of Richmond originally. Don't bother with UVA. Their lab doesn't particulary like the Dysautonomia diagnosis from what I've been told. My original cardio wanted to refer me there after my 1st TTT. She STILL refuses to believe that NCS and POTS exist. Needless to say, I didn't see her for long. I finally got to Hopkins and saw a Dr. Hugh Calkins. He said NMH/NCS, but that his study was over and he wouldn't treat me. I had to find my own doctor. I found Dr. Hasan Abdallah in Manassas.

I don't know, you might want to try UVA's lab after all. That was in 2003 that I dealt with them. They may have changed since then. I wish I could tell you someone in the area to see, but Dr. Abdallah was the closest I found that knew anything about it. And he's a pediatric cardio. But maybe if you give him a call he can reccomend someone. Here's the website www.childrenheartinstitute.org That should give you the phone number for his office.

Please let me know if you need any more info for the area, but I'm not sure how much help I'll be.

UnicornIsis

[Be Still]

I understood that MVP is diagnosed with an echocardiogram, unless they did an echo during your tilt.

You sound so POTSy, Claire, stick around here, get confident, (get a lawyer?) and keep pursing a diagnosis. You have a right to be taken seriously, to be properly diagnosed and treated. You need to know why you can't work, and receive appropriate compensation if it is due to you.

You may notice your episodes correspond to your cycle.

We're for you! Keep us updated!

[Clairefmartin]

Thanks Be Still, I do feel POTSy based on what I've been reading on this site. I am thinking of getting a lawyer, and even looking into disability once I get a diagnosis. I don't know how I'm going to work feeling like this. You guys give me hope!

[Lukkychrm42]

I understood that MVP is diagnosed with an echocardiogram, unless they did an echo during your tilt.

Exactly- they can see MVP supposedly with the echo (at least my echo says "No MVP"). I didn't think they really did tilts except with these conditions and/or if a person faints. Sounds like your cardio didn't understand much about POTS, but if you can get a copy of the writeup, that should be a valid test for POTS if your HR went up.

Vanderbilt does also treat patients outside of clinical studies... I think you have to get a doctor to refer you to them for that though. I just sent in the application and test results, and they called me back and had me in for two weeks.

My symptoms definitely come and go.... though for a while they've been more into coming and less into going

I don't know what you mean by buzzing or vibration... I shake, but it's not like I hear a noise or anything.

I also hadn't heard of any of this until my cardio (I got really lucky on this) suggested the tilt to see if I had NCS.. while they don't really get POTS, it was definitely a valuable step!

[taylortotmom]

Echocardiograms show pictures of your heart, thus, are the test of choice to check for mitral valve prolapse. It is possible your doctor was looking for "mitral valve prolapse syndrome" which is often used interchangeably with dysautonomia. In other words, many of us with MVP get the diagnosis MVP Syndrome which refers to the cluster of symptoms seen in dysautonomia.

Either way, you definitely need to be seen and tested by a doctor familiar (preferably, very familiar) with autonomic problems. Based on your description, it sounds like you fit the bill. But, as the others have stated a tilt table can give you some verifiable data when done correctly and by doctors who know how to interpret them.

On a more personal note, it sounds like you are having a tough time right now. You have certainly found a good resource with this forum. Most of us have been where you are right now at some point in our "quest for diagnosis."

If you truly feel that you will need to stop working, I would strongly encourage you to start working on your disability paperwork now. It can be a long, hard process. Since you are a teacher you might qualify for short term disaility though your employer or for the Family Medical Leave if you have taught for a year or more.

Good luck to you and please let us know how you are doing. Hang in there- we are all pulling for you!

Carmen

[Clairefmartin]

About the MVP TTT thing - I was so uneducated about what was going on, I'm not sure what was tested for, I just rememeber he mentioned MVP. I am going to request copies of all my lab work and tests so I can know what was done. I have worn halter monitors and has stress tests, many EKGs, the nuclear testing where they inject dye and watch your heart and arteries, and everyone said my heart is healthy, it just beats fast. The last time I was in the ER they saw that my heart rate jumped around when I stood up or moved, and they said "hmmm, thats interesting." and sent me on my way. They paid more attention to my blood pressure dropping when I sat up, but still told me I was fine and to go home.

Luckycharm - thanks for the Vanderbelt info, I am going to send in the app and see wat happens. Did they help you figure out what was wrong and treat you?? On a side note- do you go to the University of Co? My brother goes there:)

Once again, thanks everyone for all of the encouraging words, I have felt hopeless and doubtful that there really is anything wrong and that its all anxiety, but in my gut I know its not and I need to just keep moving forward.

Thanks!

[kmpower]

I have read or heard that some MVPs show up only when tested in different postures, and that it cannot be ruled out for certain unless postural testing is done.