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.
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.
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.
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.
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.
You should read the stories from other kids with dysautonomia and the story of Greg Page (from the Wiggles) at www.dynakids.org
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
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 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?
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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