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Looking To Talk To Others With Dysautonomia


sstephan
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Hello,

My name is Sue and I am new to the forums. I am looking to find others to talk to and provide support throughout this whole dysautonomia ordeal. A little background- I am thirty years old, married, have a sixteen month old daughter, and currently work full time as a teacher. I was diagnosed with autonomic dysfunction when I was 17 years old due to passing out with exercise. About two years ago, this whole saga started again only worse. My symptoms include racing/irratic heart rate, dizziness, nausea, vomiting, severe abdominal pain, bowel problems, chest pain, palpitations, numbness/tingling, bruising, near syncope, headaches, etc etc etc. This all started after a bout with a bad viral infection. I saw numerous specialists. I had my gallbladder removed and developed horrible pain spasms after the surgery which still occur frequently. I have been to the emergency room more times than I can count and had a rather difficult pregnancy throughout all of this. I have been told that I have anxiety, which my response is -"wouldn't you have anxiety if you were dealing with this?" As I am sure many of you have experienced, it is a horrible feeling to be told it is in your head. You begin to wonder if it is really true. After being evaluated by a psychiatrist who told me the anxiety was secondary, I began to research on my own and came across dysautonomia. I now see a wonderful doctor out of St, Mary of Nazareth Hosptial who specializes in autonomic dysfunction. I am awaiting test results (blood sugars) to see what path she will take. I currently take Toprol, Zoloft, Reglan, Nulev, and Zelnorm. I think she is leaning towards Midodrine. Over the past several months, my daughter has begun to develop some odd symptoms. Her lips turn blue and quiver either before eating, during eating, or after. Often times I notice a body tremor of sorts which once again only occurs with eating. She had an echo and an EEG- both fine. My doctor is wondering if it could be related to my dysautnomia disorder which my doctor believes is inherited. Have you ever heard of anything like this is someone so young? Her development is otherwise normal if not ahead of things. To me, it seems as though she may have a blood sugar problem. I recently had an attack which landed me in the ER with a high blood sugar level myself.

My other question is this- for the most part I am able to lead a normal life at times. I go through periods- one week I will feel great! Then whammo! I have severe gastic issues, can't eat, lose weight, get shaky, fast heart rates, can't exercise, get irritable, nausea, etc etc. It may last for a day or several weeks. My principal is used to my "episodes" and I have a hard time explaining them because I don't understand them myself. My husband does not truly understand what is going on either, It is hard not to feel like a freak when you have been through so many tests that come back normal. I am sorry this is so long! Thank you for taking the time to read my post and l look forward to talking with others who suffer from this as well.

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I am a new forum member also. I have been diagnosed with orthostatic hypotension but have had this since I was a teenager. I am now in my sixties and it is really bad. Last week, I was cooking in my kitchen. I started feeling a little "out of sorts" but was determined to finish cooking. I could feel my blood pressure dropping and my heart racing. I began to sweat profusely. Finally, I took my clothes off and wrapped myself in a towel so I could cool off. I was literally standing in puddles, my hair was dripping, and rivers of sweat were pouring off my face and down my legs. I must have had some cognitive problems because I did not recognize that I was in trouble. After I finished cooking, I drank some Gatorade and lay down to rest. Later, I went to my kitchen and saw that I had spilled grease in the floor and had been walking through it. Powdered sugar was everywhere. I remember dropping a cake in the floor, picking it up and putting the frosting on it. A couple of years ago, I was waiting in the summer heat for a bus. When I got on the bus, the cool air hit me and immediately, my bp dropped out of sight. When I woke up, I had projectile vomiting and explosive diahrrea. By that time the bus was on the freeway and couldn't stop. That was the most miserable thirty minutes of my life. These episodes leave me very vulnerable and subject me to danger. My doctor doesn't appear to understand what I have and the medication does not work. I have checked the dysautonomia web sites to find a doctor in the Houston area but do not find one. Can anyone recommend one? Or, would it be better to just go to a hospital in another state with an autonomic dysfunction center?

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Welcome to you both.

Lightwave--you may want to re-post your questions in a new topic so they aren't buried! ;)

Mom2Abby--the symptoms you describe in yourself echo others' experiences on this forum. That is great that you have a good specialist. I am impressed that you manage to be a full-time teacher and mom to a toddler with all of these issues. Very hard. I don't have any experience to relate regarding young children and autonomic dysfunction--but yes, it does appear that POTS can have a genetic cause.

Katherine

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Guest Mary from OH

Sue,

Welcome. Glad you're still able to teach. Yes, it can be genetic. My mother has POTS, so do I and my 6 year old daughter. She was diagnosed when she was 4 1/2 years old, although she has had MAJOR motility problems since birth. So, just like me, she has had it since birth, just not known it. I'm glad you have a competent and knowlegable dr to work with. There is a "child group" like this, it's called DYNA kids, but we as parents are not able to join, just the kids. Sadly, our kids are too young to join. But it does list pediatric specialists in Dysautonomia. Glad to have you aboard!! Feel free to email me anytime!!

:)

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Mom2Abby, I am so sorry you have a reason for being here, but hopefully you'll get some advice. I read the posts and try to glean what info I can so I don't wear everybody out with the questions as a "newbie" either.

Like you, I can make little sense out of much that goes on with me either. And my feeling good/then bad fall in cycles like you describe. I have discovered over the past almost three years now, that if I can do whatever I have to, to avoid passing out completely, I fare so much better -- the "down time" may be anywhere from several hours or 1.5 days. By contrast, if I pass completely out, I am wiped-out too, for as long as 5 days sometimes.

It is difficult to carry on, but I think I've learned from others to just take one day at a time.

I had to retire this past January because I was no longer to teach and deal with this, and you know how difficult it is to be at school, and then need a sub out-of-the-blue for several days to a week. I just felt like my poor students were constantly getting the raw end of the deal. I admire you for trying. I managed to finish the Spring semester, falling my initial episode in the fall, worked some at the school over the summer, and then limped through the following Fall semester. I just could not go back after Christmas last year, and ultimately made the decision to retire. I am glad you have an understanding Principal and I hope the staff supports you as well. My Principal and staff members were wonderful.

Glad you're here, although the paradox is, sorry you're here.

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I'm sure you will find many to talk to here. In your travels around the forum, you might want to look at the help yourself section

http://dinet.ipbhost.com/index.php?showtopic=1954

you will find links there to all sorts of information that newer members may not yet be aware of. The main DINET site ( http://www.dinet.org ) includes listings of doctors, listings of treatments, symptoms, diagnostic testing, etc.

Welcome. Nina

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Sue,

Welcome! You will find a lot of support and information here! I am sorry to read that both you and your daughter are having so many difficulties. I am also a teacher. I teach special ed. in a middle school. Our jobs can be very stressful. Please take care of yourself. It is hard for others to empathize with us when we do not always look as ill as we are. I encourage you to engage in discussions with your principal that your illness is not as treatable and understood as others may think. Be careful in using the term episodes. Many people will interpret that as primarily an emotional problem. Sorry if I am getting preachy, but I hate politics and education is so political. In my mind, the anxiety we experience does not make us so ill we cannot work, it is all of the physical symptoms we have that have ineffective treatments or are not understood. I have had the most luck with a cardiologist who specializes in electrophysiology and a neurologist who does not focus on anxiety. Stick with it and keep asking for answers. It took me many years and many doctors to finally get diagnosed.

Take care,

Marie

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Hi Sue,

Just wanted to welcome you and say I, too, deal with having POTS, working and taking care of a toddler. I developed POTS postpartum and have been completely changed physically and mentally. What does your doctor suspect is going on with your blood sugar? Do you have any risk factors for diabetes? Autonomic dysfunction can sometimes accompany diabetes, but usually long after having the disease. Most people here have low blood sugar, I think.

About your daughter -- I don't know what would cause those problems, but I understand why you are concerned. I would talk to her pediatrician or doctor first, to run basic tests (like blood sugar, etc.), then get her an appt. with a specialist if necessary. I hope it's nothing, but others are right in that POTS can potentially be inherited. I have no family history.

Take care,

Amy

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