Aa
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.
My son is also 16 and suffering like you. He has been home schooled for 3 years due to POTS. Medicine and therapies have done nothing for him as well. I feel bad for you but you must keep trying. I am taking my son to Ohio to an autonomic lab next month for more testing. Maybe they can offer some different medicines than he has tried.
Lets keep eachother posted.
Michele
Lets keep eachother posted.
Michele
Has anyone been to Dr. Chelminsky at University Hospital Case Medical Center in Ohio? I hear they have an autonomic lab there as well.
Any info. would be helpful.
Thanks,
Michele
Any info. would be helpful.
Thanks,
Michele
Your symptoms sound pretty much like my son. He was diagnosed in 2002. His legs, when he was 14, swelled 8+cm when a doctor had him stand still for 40 minutes and he had chest pain, nausea, short of breath, etc.
He ended up going to Dr. Grubb in Toledo and finally to Dr. Thomas Chelimsky in Cleveland who confirmed the diagnosis. Both are excellent but I like the fact that Dr. Chelimsky does the same tilt each year on the same table and give you a print out to show progress (or no change) so you have something on paper to take home to your doctor or school to show it is NOT in your head but in your ANS!
I hope you get the answers you need as I know how frustrating it is to be a teen male and have POTS. Most are teen girls with it. My son is 22 and better but not well or fully functional by any means. He keeps a positive attitude and tries to not go beyond his limits so he has fewer bad days, weeks etc.
Know that you are not alone and keep a positive attitude. Hope the following links help.
http://casemed.case.edu/dept/neurology/Chelimsky.html
www.dynakids.org
www.potsplace.com
He ended up going to Dr. Grubb in Toledo and finally to Dr. Thomas Chelimsky in Cleveland who confirmed the diagnosis. Both are excellent but I like the fact that Dr. Chelimsky does the same tilt each year on the same table and give you a print out to show progress (or no change) so you have something on paper to take home to your doctor or school to show it is NOT in your head but in your ANS!
I hope you get the answers you need as I know how frustrating it is to be a teen male and have POTS. Most are teen girls with it. My son is 22 and better but not well or fully functional by any means. He keeps a positive attitude and tries to not go beyond his limits so he has fewer bad days, weeks etc.
Know that you are not alone and keep a positive attitude. Hope the following links help.
http://casemed.case.edu/dept/neurology/Chelimsky.html
www.dynakids.org
www.potsplace.com
Michele,
As you can see here, that's one vote for Dr. Chelimsky. I know we have another mother who has taken her child there as well and has very positive things to say about it!! You may want to start a new thread with "Dr. Chelimsky" or "Case/Cleveland" in the title to grab her attention and get her comments as well if she doesn't see this and comment here.
Cheers,
-Heiferly.
As you can see here, that's one vote for Dr. Chelimsky. I know we have another mother who has taken her child there as well and has very positive things to say about it!! You may want to start a new thread with "Dr. Chelimsky" or "Case/Cleveland" in the title to grab her attention and get her comments as well if she doesn't see this and comment here.
Cheers,
-Heiferly.
My son sees Dr Thomas and Dr Gisela Chelimsky. They are both great. We only have good things to say about them. My son did not go to school for 1.5 years, and he is back this year(only 4 hours, but that is a huge improvement).
They are both very caring doctors!
Christy
They are both very caring doctors!
Christy
Oh, I'm surprised I got replies this time, yeah my problem here is that no one's taking my condition seriously, my doctors say to ignore it and live a normal life so I stopped seeing them. I don't have much of a family but they understand my circumstances enough to take care of me for as long as possible. It's hard to have hope and dreams with this condition because I can never see myself ever getting better in the future. I've had it for 2 years and it hasn't improved so far and its really getting in the way of my life.
As far as school goes my doctor (cardiologist) TOOK away my homeschooling and I had no choice but to drop out after... I had no options anymore.
This stupid doctor made it seem like I just had anxiety but its not just in my head, I know I have something more serious but yeah its hard to get people to realize how bad it is for me.
As far as school goes my doctor (cardiologist) TOOK away my homeschooling and I had no choice but to drop out after... I had no options anymore.
This stupid doctor made it seem like I just had anxiety but its not just in my head, I know I have something more serious but yeah its hard to get people to realize how bad it is for me.
Well I'm not sure if its worth getting my dad to drive me across the states for a visit to one of those clinics. I mean they might help but there's only so much you can treat it, I tried most treatments already and its just hard to believe anything else could help. If its REALLY worth it I'll see what I can do.
Don't give up! My son is finally becoming much more functional after trying a ton of different medications. Once we found the right one, it still took time to find the right dosage for him. After being sick for 3 years, and DAILY for the last 1.5 years he is now much more functional. I think there are some specialists in Chicago. Did you check the dinet. org websites list of doctors?
How far is Cleveland to you? We are in St Louis, so it is a 9 hour drive for us. I credit my sons success to getting better to his doctors, the Chelimsky's.
If I would have listened to my son's doctors here, who all told me it was anxiety, he would still be sick in bed getting worse. Keep looking for a doctor who will help you figure it out and is willing to keep trying different medications.
How far is Cleveland to you? We are in St Louis, so it is a 9 hour drive for us. I credit my sons success to getting better to his doctors, the Chelimsky's.
If I would have listened to my son's doctors here, who all told me it was anxiety, he would still be sick in bed getting worse. Keep looking for a doctor who will help you figure it out and is willing to keep trying different medications.
I am a 17 year old female with POTS. In addition to what everyone else has said, you can try looking at online classes to take. Many universities offer classes for high schoolers to take and get credit. I had to defer my college admission but am currently taking online classes which has been great because I can do them laying down (as opposed to sitting in a chair) and do them when I am feeling better. You might want to look into them if homeschooling wasn't working out.
Like patient915, my son also took on line classes all of last year and is taking 2 this year to supplement his partial day at school. My sons school is paying for them, since our state cut of funding the on line classes. Check with your school for what is available to you.
OK, sweety, calm down. You are me. I was just diagnosed with General Autonomic Dysfunction, and the same scope that you have. You discribe exactly my life. I was put on Mestinon 180 time release. My cardiologist, I live in Oregon and there are no specialists here, but she has dealt with this before. She did not build me up, but here is how I know the medicine is working, and it is not the answer, but my hair would die due to lack of oxygen. She put me on the meds and now my hair is down my back.
I am a normal person with no signs of this problem. But I found doctors that believed I had problems and I was not making this up.
I also, have horrible problems with my blood pressure. I have low bp but It goes way too high also. It is within the normal limits but it is changing to much at one time. If your bp changes 20 mg within a small amount of time, then you are not getting oxygen to your brain. I know this is putting out some money, but I got a wrist bp monitor that you can download your bp to the computer. I have documentation that my bp will go from 120/70 to 150/100, by just switching from laying on my right side to my left. My bp has also been 169/112, and 151/72. So please check your bp. Take it 3 times within 30 seconds of each of them. Also, see what happens when you stand, sit, lay down, and bend down. I did this for a week, and I had to go to the ER and it showed the dramatic change, for just walking to the bathroom. Not far at all.
I am a normal person with no signs of this problem. But I found doctors that believed I had problems and I was not making this up.
I also, have horrible problems with my blood pressure. I have low bp but It goes way too high also. It is within the normal limits but it is changing to much at one time. If your bp changes 20 mg within a small amount of time, then you are not getting oxygen to your brain. I know this is putting out some money, but I got a wrist bp monitor that you can download your bp to the computer. I have documentation that my bp will go from 120/70 to 150/100, by just switching from laying on my right side to my left. My bp has also been 169/112, and 151/72. So please check your bp. Take it 3 times within 30 seconds of each of them. Also, see what happens when you stand, sit, lay down, and bend down. I did this for a week, and I had to go to the ER and it showed the dramatic change, for just walking to the bathroom. Not far at all.
Cont.... Just did not want to lose what I wrote.I am 37 and when I was your age, I was just a fat, lazy, sick, kid, who if I lost weight then I would not have these problems.
Once I was diagnosed, I got online and learned. There are alot of us out there. We are everywhere, so you will have help and support.
I also match the POTS and that is what the cardio thought I had. But my heart is healthy and only shuts down if I have a trama to my body.
I have had problems with this since I was a child, and the more that you learn about this, the more you will realize, what is going on. I know if is kinda disappointing when you first get the diagnosis, but you have to fight to get things done.
I am on facebook, and even though you do not have a specific reason, then you have to do alot of research. Go to a clinic if you can or a specialist that deals with this, or you have to play doctor. I don't have any money to go anywhere, I was rejected from the Mayo, and I can not get on a plane. So I am stuck here, I love my doctors because they try to do and believe me, but I have to do all the doctoring.
My email is ***@**** and you can locate me on Facebook. You can also look up dysautonomia on the internet to find different info that will help you. One site is dinet.org and the dysautonomic connection.
We are out there and you are not alone. There are so many branches of this. Please find some support to help you vent. It is ok to be angry and get it out. If no one supports you personaly, we will help. Honey, prayers will help also. Hugs and prayers are sent your way.
Once I was diagnosed, I got online and learned. There are alot of us out there. We are everywhere, so you will have help and support.
I also match the POTS and that is what the cardio thought I had. But my heart is healthy and only shuts down if I have a trama to my body.
I have had problems with this since I was a child, and the more that you learn about this, the more you will realize, what is going on. I know if is kinda disappointing when you first get the diagnosis, but you have to fight to get things done.
I am on facebook, and even though you do not have a specific reason, then you have to do alot of research. Go to a clinic if you can or a specialist that deals with this, or you have to play doctor. I don't have any money to go anywhere, I was rejected from the Mayo, and I can not get on a plane. So I am stuck here, I love my doctors because they try to do and believe me, but I have to do all the doctoring.
My email is ***@**** and you can locate me on Facebook. You can also look up dysautonomia on the internet to find different info that will help you. One site is dinet.org and the dysautonomic connection.
We are out there and you are not alone. There are so many branches of this. Please find some support to help you vent. It is ok to be angry and get it out. If no one supports you personaly, we will help. Honey, prayers will help also. Hugs and prayers are sent your way.
I don't know what to do about it anymore honestly, if I really tried I could probably see a specialist but all they'll do is prescribe me with some meds that might not even help. Medication is a chance thing it doesn't help everyone, also the one medication I was on might have made me develop more symptoms and made me worse... I don't really trust meds anymore because of this now.
It's hard to believe there's any treatment out there that will help much, my main issue here is the symptoms I get though and my blood pressure drops easily btw. Its very hard for me to go out because of it, I know you all want me to believe but I've tried so much until now and nothings helped.
It's hard to believe there's any treatment out there that will help much, my main issue here is the symptoms I get though and my blood pressure drops easily btw. Its very hard for me to go out because of it, I know you all want me to believe but I've tried so much until now and nothings helped.
There are a bunch of things you can try that are not medication. Get lots to drink every day (I aim to get 80-100 oz of water every day). Get lots of salt (I do this by drinking 1/2 tsp of salt in water plus salt on foods). My doctor has recommended getting at least 2 grams of salt a day. Try things raising the head of your bed. Try getting mild exercise if you can tolerate it like a recumbent bike for a couple minutes. I've also found that when I'm doing worse, a couple of liters of IV fluids helps a lot (even when I've been drinking plenty orally). Can you tell us all the treatments you've tried so we can tell you if there is a good one out there that you haven't tried? I've only started posting on this forum recently and the people here are so supportive and always answer your questions, it's just great to have a good support group.
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.
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.
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 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
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.
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 ***@****
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?
Is it possible I'll be able to ever improve just waiting it out for years?
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.
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.
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
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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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