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1399250 tn?1436943297

Need the right diagnosis, help!

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.
Best Answer
1323747 tn?1364806882
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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Avatar universal
The website below has a section for schools.  Check there for ideas.

http://www.dynakids.org/what.jsp
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Avatar universal
I would like to know the list of accommodations the doctor wrote, I was asked to write a list of them for DSS (disabled student services) and have no clue where to start. I am worried getting half way through the semester and having issues and it not being on the list.  
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Avatar universal
Hi,

Did you get a chance to call Dynakids?  It would really help for you to connect with POTS kids your age.  There are young teens, older teens, and early twenties so they can easily relate to what you are dealing with daily.

They have so many helpful ideas for you because they go through what you go through daily.  Some, like my son have had POTS for several years.  

You need friends and you need friends your age who understand.  

All the suggestions in these posts to you are good but I still think you need to connect with dynakids and know that you are not alone.  

There are other kids in your area who have POTS!!  Maybe you could connect with them through dynakids.

With exercise, don't get too tired by doing too much but don't stay flat either.  Just start with a 10 minute walk and see how you do.  If there is a pool in your area it will help a lot to walk in the pool.  The hydrostatic pressure of the water acts like a compression garment and you can do more and be upright longer.  Just be careful getting out because gravity takes over and you may feel light headed.

Let us know if you call dynakids.  I told my son about you and he knows what you are going through.  He is in dynakids also.

Take Care and please reach out to other kids with POTS.  I would help so much.
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1323747 tn?1364806882
I can understand your feeling insecure about going out when feeling sick or having the possibility of fainting.  You would probably feel more secure by going to an appt. with a family member.  That way if you have a problem they are there to help.  Pace yourself and your activity.  Make sure when you sit you have your feet up on a support like a footstool when you can.  If you take a backpack with you you can prop your feet on that.   Don't stand for long periods of time.  This article explains some of the things that you should avoid.  Under Exercise it explains what types can be problematic.

http://www.dinet.org/what_to_avoid.htm

Set yourself up for success in going out by making trips short and find a way to lessen the strain.  Go when it isn't too hot.  Some people use a wheelchair...others a walker with a seat so they can easily sit down and rest... others might use a cane.  Be sure around your home you have a way to rest with your feet up.  You can stack boxes and top it with a pillow if needed.

One way to look at it is going to a specialist may mean getting appropriate care and tx that makes you feel better overall and lessens your symptoms....so you may have to put yourself out there feeling uncomfortable to get the help you need to feel better.

Remember too when using the phone call links others have given you here...you don't have to worry about what to say.  If you call the person at dynakids a simple introduction of who you are and what your medical dx is will naturally lead to conversation. No big planning needed.  Your confidence will increase the more connections you make.

I think it positive that you have identified your reason for having trouble leaving the house.  Talking to other teens with the same problem would be a chance to learn what has worked for them that you may be able to copy.  There  is no reason to travel this journey alone.  

Let us know how things go.  Marie

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1399250 tn?1436943297
I think a huge part in this is that I'm too afraid to leave my house due to feeling sick and fainting, sometimes I just wish I will never have to go out again.

But maybe if I start exercising more and try to get used to the symptoms I'll have the courage to see a specialist and get help.
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Avatar universal
I have to drive my son to the university today but I wanted to check first and see how you are doing.  

I can't urge you enough to just pick up the phone and call dynakids.  Did you get a chance to look at their website?  

It is an awesome group of kids your age with your symptoms.  Some of them are shy and many are girls but there are boys in the group.  

Debbie has worked with many, many kids with various forms of dysautonomia.  She is a great listener and full of great information.  

She also has brochures that are designed to educate family, friends, teachers, and doctors about your condition so you have professionals to to help family and friends learn  about POTS.

My son just loves those tilt tests - not really!  He sleeps the rest of the day and most of the next day afterward. Dr. Chelimsky gives him a print out that show his heart rate and blood pressure as well as symptoms experienced for every minute he was able to remain upright.  It's great to take to your doctor back home.  It valadates everything so no one can doubt you.

Don't forget - Today - call dynakids 301-705-6995.




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1323747 tn?1364806882
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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1399250 tn?1436943297
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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Avatar universal
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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1399250 tn?1436943297
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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1323747 tn?1364806882
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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1323747 tn?1364806882
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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612876 tn?1355514495
I understand how overwhelming the stress of a chronic illness can be, especially when you pile on top of that the difficulty of finding medical professionals who understand and know how to help, and the school/career woes that most of us face.  

Please do not lose hope.  It is easy in low moments to start to lose hope and feel like giving up in one way or another.  You have an entire chorus of people here who have been down this same road telling you that THERE IS HOPE.  THERE ARE BETTER DAYS AHEAD.  You can do this, and you have a lot of people here happy and willing to support you along the way.  

If you're not interested in this kind of support, or you don't feel that you need it, please disregard.  But in case you aren't aware that these resources are available, MedHelp has a Teen Depression Forum:

http://www.medhelp.org/forums/Teen-Depression/show/185

Here's the main Depression Community:

http://www.medhelp.org/forums/Depression/show/57

The Children's Special Needs Community is open to discussions of alternative education options, so the people there might have more ideas about what you can do to finish school:

http://www.medhelp.org/forums/Children---Special-Needs/show/84

Please let me know if there's a particular kind of support that you are looking for that I can help find you.  I need to go to sleep but I'm going to try to get you more resources.  Do you want links to information to read up on autonomic disorders, or have you already had your fill of that sort of stuff on the internet?

Take care of yourself,
Heiferly.

PS
I'm sending you a private message as well.  Check your inbox.
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1399250 tn?1436943297
It's just I'm really afraid of it... it's hard for me to go anywhere outside of my house it's gonna take a lot of effort that's why Im unsure if its really worth it. I don't wanna give up either because its not going to get me anywhere, ignoring it doesn't stop the symptoms from bothering me.

I need a lot more time and I'm going to write down all the symptoms I get and doing what when I get them, that way the doctors will have a better idea. I hate knowing the fact I had to get stuck sick though, I'll never be 100% normal again no matter the treatment.
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Avatar universal
You should read the stories from other kids with dysautonomia and the story of Greg Page (from the Wiggles) at www.dynakids.org  
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1323747 tn?1364806882
I understand how overwhelming this can be.  I really need to know what you mean by giving up.  

If you mean staying on your present regimen with your present doctor that is one thing.  If you are feeling like you don't have the energy to seek out another doctor or to make changes that might help then that is another subject.  Depression can be paralyzing.
If you are feeling depressed and helpless and that is what you mean then you need to get professional help right away.  Depression is a serious chemical imbalance and you can't make decisions easily when you are overwhelmed by negative feelings.  Your family doctor can help with depression and there are crises lines for immediate help.  I want to make sure you are ok. We had a family member go through a health crises when a teenager and they needed extra support.  We all need extra help sometimes.

As to your question. I have read of two people who had autonomic dysfunction who are free of it now.  One had a special condition that was cured by a special blood replacement procedure...the other was having symptoms because of a cause that could be remedied.  I read about one in a medical journal and the other was on a forum here. I am not saying that to cause false hope but to show that there are always possibilities.  There are new drugs coming out next year that are very promising for the hypotension.  I myself through general testing am finding things that I can change that help me feel better.  One was a vitamen deficiency and another was a thyroid imbalance.  I am continuing to check more things out so I have the best chance to feel the best I can. Life is precious...and the world is full of good things.  

If you don't feel well now and feel like your doctor doesn't even listen to your complaints then seeing a specialist in your area seems like a good idea to me.  You deserve to work with someone whom you can work with, who believes you, and who can offer suggestions that are helpful.  

POTShelp gave you a phone number and I think calling them tomorrow  and talking would be a good first step so you can see if they can help in some way.  There are resources out there.  Again, if you are feeling like you are in crises right now, you need to call a crises line for help or call your doctor.  I want you safe.  Marie

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Avatar universal
Call dynakids at 301-705-6995 first thing tomorrow morning.  That is where we found support and a doctor for our son.  Dynakids is just young people your age dealing with POTS and other forms of dysautonomia.  

You still need an accurate diagnosis by a supportive and caring physician.  You question your dx of neurocardiogenesis syncope.  My son was first diagnosed with that exact condition.  His diagnosis is POTS and some other things.  Your symptoms sound like my son's symptoms and my son's legs swell.  My son is getting better but not without a great POTS doc.

I think you have a lot to learn about your condition and that medical information should come from an expert in Dysautonomia, a caring and compassionate physician such as Dr. Grubb or Dr. Chelimsky.

Dr. Grubb is just a few hours away from you in Toledo.  He works very closely with Dynakids.  Dr. Chelimsky is in Cleveland, also within a days drive.  You are lucky to have world respected Autonomic doctors so close to you.  There are patients that fly in from other countries to see them.

Dynakids is reaching out to you.  Please do something for yourself and pick up the phone tomorrow moring and call the number listed above.

You can contact Dynakids and they can put you in touch with us if you would like to talk to my son.  He will tell you that you can't do this alone and you need support from kids your age (dynakids) and a good doctor who believes you.  

My son would also tell you to get an education.  Kids with POTS do finish high school and do go to college.  You can too!

I will say a prayer for you and hope you find the answers you are looking for.
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1399250 tn?1436943297
I understand seeing a specialist for Dysautonomia might improve my chances of getting better, but I really do feel like giving up so bad... I mean I don't know if its worth visiting one still, I may or may not get better its all taking a chance.

Is it possible I'll be able to ever improve just waiting it out for years?
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Avatar universal
www.dynakids.org would be happy to see if we can help you in any way.  Please feel free to contact our office at 301-705-6995 or email ***@****
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Avatar universal
Dear No Fluxes -
Where is your home?  I am asking to see if you are near a good POTS doc.  We are in Florida but do know POTS kids through www.dynakids.org   Perhaps if you connect with that organization, you can find POTS kids in your area.  

Dump that doc that is undermining your education and your progress.  He may be near you but I am worried about what he has NOT done for you.  It is evident in your messages.

We do not have a lot of money either but I would make sure my child got to a specialist in the area of his(her) health problems.  You must get to an Autonomic Clinic and I have mentioned the two docs that my son found the most helpful and supportive.  If you had  cancer would you go to a cancer specialist?  When you have POTS you must go to a POTS specialist!

Education - you may not see the need for it now but believe me that you will wish you had seen the need to continue your education in 10 years!

You are entitled to FAPE, a Free and APPROPRIATE Education until you graduate from high school and your POTS doc will fill out your hospital home bound papers.  I don't care if you can only take a couple classes a semester (like my son) do not give up on learning.

We are in Florida but do visit the Midwest twice a year.  Perhaps you could meet my son.  He not only has POTS but his legs swell 8 + cm when he stands and he has vascular like tumors in his right arm.  He was told a year ago that his right arm needed to be amputated.  

My son said "no way”.  He had radiation treatments from a wonderful and caring doctor who told us if your doc does not believe you then get away from that doc.  My son is dealing with so much crap but will not give up.  His POTS got so much worse through the radiation but he went right back to college for 6 hours a month later.  
You can do anything you want to do just make a plan and set that plan in motion!  You must spend a lot of time reclined but you will get worse if you spend all your time reclined.   Get out and walk.  Start with 10 or 15 minutes morning and late day.  Get sunshine – it gives you vitamin D and a lift to your mood.  Do drink your water and salt per your doctor’s instructions.  Meds work for some kids but they did not for my son.  What works best is keeping a positive “I can get through this” attitude.

You do not give up.  Someway, somehow, your friends who have dealt with Dysautonomia (and all its debilitating effects) can help get you through this but you have to listen and take action toward getting help and planning for a more positive and manageable future!  

You are just too young to see what is ahead in 10 years but you will be there faster than you think so take action now.
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1323747 tn?1364806882
I just got back to the forum and wanted to say I understand how frustrating it must be right now but I do think there are positive steps you can take that will ultimately open more doors for you.  First of all you need to find a doctor who "gets it".  I can not speak from personal experience about any doctor in your area but I did find on the dinet site a listing for a doctor in Chicago that others with your dx. have found helpful and she is at two sites and is listed as a caring knowledgeable person.  I will put the link to the page with a link to her information next. Her name is Dr. Gilden.  

http://www.dinet.org/physicians.htm#United%20States

Make it a top priority to find a doctor who can help you.  You deserve support and understanding by a professional. Make a list of the symptoms and problems you have and take them with you to your appt. along with your dx and a list of meds.  Having someone professional who understands your dx. will be one of the most important things you can do.  Explain to him/her the problem you have with attending school and the way you lost this due to the statement of one doctor.  My hope is that you will find support from a new doctor who understands the dx.

In the meantime here is a link to NIH trials (down the page) that you may well qualify to be in free of charge.  They will even arrange transportation if you qualify for one.  These trials change periodically and I would urge you to apply for one if it fits your needs after explaining to your parents.  As a minor they would have to sign consent I believe.  This would be a way to get testing at an autonomic testing facility even though there are  limited funds.  Some universities may also have testing available through studies being conducted.  

http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

Once you have the connection with a doctor who you can work with then the education can be re-addressed.  I have seen some good suggestions on here from several people about education. Potsinfl had many suggestions plus two doctors she recommended. If you want I can research where more help with education is available in your area when you get to this point. Do not feel alone.  There are lots of people here who can help with ideas.  My parents always said two heads are better then one and as corny as it sounds think how many you have here already with suggestions.

There is hope.  Things can get better.  You can find ways around much.
Right now remember that having your legs up and horizontal may work better for you then having them down.  Footstools...eventually for more mobility if needed a wheelchair that allows you to have your feet straight out...may be temporary options...Carbs can drop you BP too.  That is common.  Some people like me get lower BP after meals that are high in carbs or meals that are too large so smaller meals with protein are good for me. (I have a different autonomic problems then you but it does involve low BP)  It takes a while to figure out what works best for you.  For sure getting a doctor who can help will go a long way as will testing down the line to understand your needs better.  If you go to the dinet site another person listed you will find on the left hand side a reference to things to avoid.  It is most helpful to know what things may aggravate your symptoms.  It is one you can show family orfriends or eventually teachers so they understand your limitations.

It is hard having a dx where your limitations are not obvious.  People have to be educated.  Once  you have a doctor who understands your dx you can start building your support team.  You need people around you who get what you are going through.

I really want to acknowledge the fact that losing your ability to live your life the way you planned is a big deal.  You will go through a process of grieving that loss just like you would in losing a friend.  It is important you recognize this and give yourself space and permission for these feelings.  At the same time you need someone your age or a counselor to talk with about the day- to- day living with this.  You can always send a private message to someone on this forum who matches up with you experience/age wise to see if they would like to correspond.  There is also a link from another member to dinet's children's forum and you might well find others there who are going through some of the same things.  I am hoping in your town there are other untapped resources as well.

As for hope, there are new drugs on the horizon with good potential and most likely more coming along.  Hopefully too research makes progress in tx.

Remember in this day and age not everyone has a traditional 9-5 job and some people work from home.  You have many potentials that have not even been tapped.   Right now would be a good time to take stock of your interests.  They could really help you right now.  

I want to get this off to you.  I hope you are able to find a doctor to work with soon and that you also find support on line and off. You can post more questions as they come up or just let us know as things progress for you.  Hang in there.  Realize you have much potential and believe in your possibilities.  Marie



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1399250 tn?1436943297
I understand I do have my whole life ahead of me still for only being 16 years old.
I do hope I'll improve as I grow older and out of the teens at least, but I'm kinda relying on that only chance since nothing else is really working for me.
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1399250 tn?1436943297
I'll admit I haven't tried every treatment, but I do natural treatments like drinking liters of water and eating salty foods. Also sometimes I eat a little salt by itself (once a day)  and it kinda helps. I wear 30-40 mmHg thigh high compression stockings as a treatment, they reduce my chances of fainting by a lot but do not improve my symptoms at all.

I don't have much support and I've been accused of faking the illness many times by family, doctors, and people at school, it made me really depressed knowing no one would believe me, after I got proof from the tilt table test people started to believe me more but still no one takes it seriously, they look at me as a normal person still...
I really do hate my life though, it ***** waking up everyday knowing that I'm stuck home while normal people can have fun.

About school well, my former doctor who was a cardiologist told the school authorities I was well enough to go back and all I need is to ignore it like nothing (assumed I had anxiety). Because of that I lost my homeschooling and had to drop out immediately, that was the beginning of this year by the way. The way I see education is why even bother finishing high school, I'll never be able to work as long as I'm this sick so it really means nothing in the end. I figured maybe I'll improve in the future someday and can study for the GED test and finally get one, it might not be the best idea but I'm not ready for school again I rather wait that long if I have to.

I forgot to mention health isn't my only issue in my life but its the main issue, money is a huge problem though all this healthcare costs money that my family doesn't really have, I wish I had more support it would make it a lot easier to do something about my illness.
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Avatar universal
Do not feel sad or sorry for yourself.  Get mad and get busy getting back at those docs who do not believe you.  Absolutely- it is worth the drive to go see Dr. Thomas Chelimsky or Dr. Blair Grubb.  They will believe you and they will give you hope.  

There is not magic med, no magic dose, no crystal ball to see the future.  There is the ability to try different meds and different doses and there are different phases of POTS over the years so you will always need to adjust what you are doing.

You can't start on the road to recovery until you see a doc who is compassionate and who specializes in Dysautonomia.  That is why I recommended the 2 specific docs to you.  

My son has been to Dr. Stewart (Valhalla NY) Boston Children's Hosp, Johns Hopkins, Dr. Grubb, Dr. Chelimsky, Mayo (Minnesota) and they all told us "yes he has POTS and there is no cure".  We took him to so many Autonomic Centers because we could not believe that there could be no cure.  How can we bring kids from other countries and cure them but there was not cure for our son?  

Our son got mad and said POTS will not take away his life.  He used to have bad months (age 14 to 17) which became bad weeks (age 17 to 20) , which is now just bad days.  He is on no meds as meds made it more difficult to do school.  

Our son can't go walk the mall but he can do online games with his friends.  He finished high school through the hospital homebound program.  If your school will not do that then you must file a complaint with the Office of Civil Rights.  You can go to http://www.hhs.gov/ocr/ for more information.

Our son had to file several OCR complaints.  You are entitled to a Free and Appropriate Education until you graduate high school.  Appropriate is the key word.  If you can't go to school then they must come to you!

In your senior year of high school you need to get connected to your local Voc Rehab program.  Voc Rehab is run through your state Department of Education.  They will pay for job training or College - which path you take is your choice.

My son uses an electric wheelchair that leans back and gets his feet us to go to college.  I drive him and he can only take 6 hours a semester due to his POTS.  It may take 10 years for him to graduate but he will graduate.  When you have POTS you can't depend on your body to do labor (work) so it is important to be able to train for a job that you can do from bed or a reclined wheelchair.

The wheelchair was paid for by Voc Rehab because it is the only way my son can do college.  A well known POTS doc wrote the letter to Voc Rehab to get the wheelchair.  The POTS doc also wrote a letter to the college to get 504 accommodations.  I can give you a list of the accoms you will need if you like.

Do NOT let POTS get the best of you.  Get to a great POTS doc and get busy living your life.  You will get through this.  You may never be rid of POTS totally but you will get better and you will get better at living with and managing the symptoms!!  Just give it time and map out a path for your future.  

Most of all Do Not Lose Hope!!!

Life is a journey whether you have POTS or not so make the most of that journey by finding ways to defeat POTS and achieve your goals.  Dr. Grubb or Dr. Chelimsky can help you do just that but you must first make an appointment and get there!  

Don't give up.  Don't count your progress by days because you may not see big changes in days.  You will see changes as your body matures and puberty passes.  You will be on this forum at age 22 telling us that you are better and you see a bright future for yourself.
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