Need the right diagnosis, help!

NoFluxes

Hey, I'm new here and need help and advice on my condition, I'm 16 years old and this disease has taken over my life. 1 year after getting almost every test done, I finally had the tilt table test done and I fainted. I was diagnosed with neurocardiogenic syncope. I myself don't believe I have it. I'm lightheaded at all times and have ringing noises in my ear always. Symptoms I get as soon as I stand up are: lightheadedness, fullness in the head (as if somethings pushing against my head), racing heart, sweating and this hot feeling I get. Also the longer I stand the more my body starts to ache, my legs get swollen and my feet also ache. Medications don't help my symptoms at all, I've tried one called Florinef, but it didn't do much at all really. I wear 30-40 mmHg compression stockings to reduce my chances of fainting. Unfortunately I had to drop out of high school because of this disease. I'm home and safe now but I can't even go out without having to risk fainting and feeling the symptoms. I don't believe I have neurocardiogenic syncope because I feel these symptoms at all times and not just standing or sitting down. I looked up POTS and my symptoms all seem to match it. Anyway I'm not sure what else I can do about my problem, treatments don't help me much, and this condition is ruining my life.

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mtgardner

First of all it sounds like you need more answers.  It is very hard when something medical disrupts your life to this degree especially at our age and you need answers and help.  It sounds like you might benefit from being tested at an autonomic testing center. They could narrow down what is going on and suggest what would help.

There are only a handful of these in the U.S.  One is the Mayo Clinic.  These are the ones I have seen listed and most will have information on line.  They have phone numbers you could call.  Others here might have more specific information and some in your area of Chicago might even know certain doctors that might be helpful.

- Vanderbilt Autonomic Dysfunction Center

- Cleveland Clinic Autonomic Laboratory

- Langone Dysautonomia Center

- Mayo Clinic Autonomic Neurology Group at Minnesota

The National Institute of Health also has a testing lab in Maryland and has some studies you might qualify for. If you need a link to their site let me know.

If you have a medical condition that keeps you from attending school it is my hope they have some program to bring the schooling to you so you can continue at your own pace.  I hope you have an advocate who can check this out.  Everyone has a right to an education.  If you have dropped out without resources my guess is you can drop in again if they have resources available. You are eligible for education in most states up to the age of 19 altho it may be higher.

Also it is really important you have people you can talk to about what you are going through.  I hope you find that here and that you also have some type of counselor available.  I know from experience having others who understand the symtoms on a day-to-day basis is golden.  This forum has lots of people going through similar circumstances so I hope you get lots of answers to your asking for help.

I guess most of all I want to say you are not alone in this and  here you will find others willing to offer suggestions that will be helpful... Marie

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mtgardner

So far for me no one has wanted to redo any tests except for blood levels of things they are checking because they have been off like my thyroid or my vitamen levels.  I have only done one tilt table test for my original diagnoses and one MRI and one echocardiogram.

I think results of a tilt table tests  are believed for what they are.  They are proof positive you have a definite medical problem.  Someone else who has had a diagnoses longer then I may have more information on long term testing.

I enjoyed reading LA1989's post.  The person who started dynakids sounds awesome and I think she would be a wonderful person to talk to and a wealth of information.
I hope you find helpful advice and new friends there!

Good luck with that and let us know how things go.  Marie

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NoFluxes

I'm alright don't worry about me, If I need more help I'll contact dynakids I guess, I'll try to convince my dad to take me to a specialist in chicago.

There's one thing I kinda need to know though...Will I have to get the tilt table test done again to prove I still have a form of Dysautonomia? I'm just really afraid of getting that test done again lol.

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LA1989

call dynakids--or email, if you're more comfortable doing that. Calling will get you directly to Debbie Dominelli, who started dynakids because her own daughter was so sick. She is an awesome person with lots of advice and resources. Their program is huge and she will encourage you to sign up for their teen forum. You will find lots of support there and will be among people your age who are dealing with much of the same stuff you are.
One caution--there are lots of girls on that forum. And they have a no dating policy amongst the members. :)
Good luck..

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NoFluxes

Alright... I'm still unsure where to start.

If calling dynakids at 301-705-6995 will get me anywhere I'll think about it but I'm very shy and stuff I don't know if I have the courage to do it lol.

The only thing I fear is if I do all this then see a specialist and I can't get the help I need, I'm gonna be really let down again and lose hope if that happens.

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mtgardner

When I posted I saw Heirfly's post came up. Great resources! ...Doors are opening....You just need to walk through the ones you choose...Hope you too get a good night's sleep. Marie

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mtgardner

First of all thanks for posting back.  I understand it takes time to do things.  I allow myself a lot more time now to do things and I think your list is a good on going project.  You can add to it as you think of things.

I think it would be very helpful to you to talk to other  teenagers who have been in this circumstance.  I am hoping you call the office at dynakids tomorrow and talk with someone there.  I have no doubt they will be able to open doors for you and help you find resources.  I understand too the term "kid" does not exactly apply to a teen-ager but it is a catch all term for under 18.  There are many teens there.  I am hoping too you find some counseling in Chicago. I appreciate the fact you are reaching out here as it shows you are looking forward to possibilities and I believe you will find yours.

Once resources are found I am hoping a way can be found to make your leaving your house easier.  Please remember there are others who have been in your shoes and have found ways to do things that  have a positive result.  This is your chance to tap into those resources and not have to reinvent the wheel yourself.

Please let us know how things are going tomorrow.  I am thinking positive thoughts for you. Marie

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