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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.
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 ***@****
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.
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.
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
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
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.
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.
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.
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.
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.
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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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