sstephan

I would be interested in a link too. My daugher is being evaluated for autonomic dysfunction. Thank you.

Thanks for the replies. I called my doctor today and he wants to do another CBC again tomorrow just to be sure. Interesting that you all get bruising too.. This illness is certainly bizzare.

I also had swelling when I was on Florinef. I would probably check with your cardiologist though to be on the safe side.

Hi everyone Just felt like posting tonight that I actually had a very good day. (interesting because the I felt horrible all weekend) I went for a SHORT jog this evening after it cooled down and actually did okay. I have not felt that good in awhile. I hope I did not overdo it but only time will tell. I felt a little like my old self. It is nice to have days that are symptom free once in awhile! Susan

Riding in car is so difficult if it is warm. I try to put the seat back but it does not help too much. Sometimes I just know I have to get out of the car and lie down right away.

Amy, I too get that dazed feeling. I find that eating sometimes helps. When I am working it usually happens around mid afternoon. I feel very out of it, tired, and find it hard to carry a conversation. People always ask if I am okay and I know that I will be fine if I am just left alone for awhile.

Nadine I just had the same experience yesterday! I have a cluster of bruises on my arm and my neighbor looked at my arm and asked if I was safe in my home. Ah yi yi.

Hi Just wondering if anyone has ever had unexplained bruising. I have had several bouts of this on my legs. Looks terrible- I get large huge bruises all over my calves and thighs. The docs have seen this and did some bloodwork but everything is fine. One doctor actually told me I am running into things and just not remembering it. I think I would remember based on the size of the bruises. People always ask me what happened and I don't know how to respond! It's not all the time....only sometimes. They just reappeared again and am wondering if anyone else has experienced this. Susan

I too have problems with balance at times. I can't balance my bike if my daughter is in her seat on the back of it. I can no longer ride with her because I fell not too long ago with her in the seat. (she was fine thank God) Sometimes I have problems with peripheal vision too.

I certainly understand where you are coming from. I have not been feeling well at all myself. It is very depressing and very very difficult for your husband and children when they just can't understand. I would love to go away with my husband but am just too scared now. I have a fear of traveling because I am scared to go too far away from the hospital and doctors who know me. It's an awful awful feeling, but as someone else posted I just remind myself that it won't kill me. I have a one and a half year old daughter and when I am feeling especially down I try to remember that I am lucky to have gotten through a pregnancy with POTS rough as it was. We are all here for you.

Hi I went through a brief period of smoking during my college days- at the most a year. I had pneumonia which is what triggered this whole thing. I have had several chest x-rays with "shadows" and I too have seen a pulmonogist. I was just reminded of this reading your post My pulmonary function tests were abnormal which they thought was due to my pregnancy. It was not asthma- whatever the opposite of that would be. I wonder if now that I am no longer pregnant I should ever look into this again. I have breathing problems once in a while but notihing too severe. Susan

Thank you all so much for your posts. It was so nice to hear from all of you and thank you for sharing your experiences. My mom and I were talking today and she told me that any mom always worries about what if something should happen to you and your child would be all alone- regardless of having an illness or not. So I began to feel a little better. My daughter is 18 mos old which is why I worry so much about it. She is too little to do anything or understand why mommy is isn't feeling well. It helps to know that you all go through the same thing too! And that you have days when you feel great and days when you are a totally different person health wise. I guess it's the mystery of this illness. I had a student pass away about two years ago from a very rare horrible genetic disease called ALD. When I am feeling down, I often think about his family and count my blessings. Thank you again, Susan

Hi Just felt like writing a short post tonight. I am feeling a little down about this whole illness. What really bugs me is that I don't know what the future will be like for me. What really gets me is that sometimes I feel just fine and forget about dysautonomia and all I have been through. Then like today I took my daughter for a walk around the block. It was very muggy out and wham! felt horrible again. The other day I felt well enough to go the gym. Then I felt really depressed once I got there. At one point in my life, I was a fitness instructor and worked out constantly. It was a way of life for me. Now when I am able to go to the gym I feel very out of shape and have trouble with coordination if I take a class that I once was able to teach! I have trouble following some of the steps not to mention heart rate. My hubbie is a weight lifter and it is a constant reminder of the person I used to be. I am a teacher and off for the summer now. This sounds stupid but when I am working my daughter is in daycare. I feel like I don't have to worry as much about her because she is in good hands. Summer is the worst for me due to heat. Now that I am home with her by myself all the time, I worry that something will happen to me and I won't be able to take care of her. Then I can put it out of my head and live a normal life again. But once again at a trip to Target yesterday I got very shaky and my blood sugar was low and I am now worrying again about taking care of my daughter on my own. I have times when I can function very well. Then I have times when I can barely function at all. That is what gets me about this illness. At the same time I am also realizing how much it has taken from me all the same. And I get frustrated that friends and family just don't understand. Thanks for listening. It helps just to vent a little. Susan

Have you taken Reglan before?? Be careful with the dosage. I had a high dose through IV in the hospital and it made me very anxious. My GI doc does not like giving Reglan. For whatever reason he said it is not a good medication to be on for very long.

Hi I am not sure where you are from but there is a doctor in Chicago. My 18 mo old daughter is having some issues that they were not sure if it was autonomic in nature. We had a consult with Dr. Todd Davis at Children's Memorial in Chicago. He is listed on this website- that is how I found him. He does not see patients regularly, however, his nurse was very accomodating and he saw my daughter on consult basis. Otherwise I would suggest a pediatric cardiologist. My daughter has seen one in Chicago and most should at least know something about POTS. Best of luck. Susan

Hi all, Just wondering if anyone has experienced this. I get pain when I have any pressure on my chest. Today I was holding my daughter against my chest. She was leaning her head and applying pressure and the pain was so intense I felt like I couldn't breathe. I also can't take my husband holding me in bed at night. My chest just always hurts if I have any pressure on it. Actually it is right below near my rib cage. The pain is very uncomfortable but have had this for awhile. Has anyone experienced this or know what it might be? Thank you Susan

I also have had two endoscopies and have to agree- it was a piece of cake compared to other medical testing. I don't remember a thing either time. As far as anesthesia, I would look into this. I was not diagnosed at the time and did not know what to ask for. I think there is something to avoid- maybe it is listed on the website somewhere. Best of luck to you and don't worry- this test is not bad at all. Just had a sore throat for a day or so.

Hi My husband has had a stricture that he has to get re-checked often. Maybe the feeding tube is a good idea right now. My husband also used to choke on everything he ate and ended up with a Mallory Weiss tear. At least this way you can be sure you are getting nutrition without the risk of choking. The whey protein drinks are a good idea. My husband drinks them for bodybuilding and likes the taste. They are protein rich and available at most health food stores. Thinking of you Susan

I also take Toprol and notice a change if I miss a dose the same day. Talk to your cardiologist before you think about stopping it. Does your cardiologist prescribe the midodrine?

Hi Joy I do remember one instance when I was in the hospital emergency room. I had a very difficult time talking after it happened. Another time I had slurred speech.

Hi, I was wondering if anyone else could describe their adrenaline rush feeling. I have had many instances of racing heart but last night was the worst. I am a teacher and was sitting at a school board meeting. Out of nowhere, my heart began to race faster than I had ever felt before. Normally I am able to deep breathe to try to slow it down. However, this time it was beating so fast that I had to breathe really fast at the same time. I excused myself and went to lay down in the teacher's lounge. After about ten minutes it subsided and I was able to return to the meeting. I had some minor chest pain after. Is this an adrenaline rush? My question is also are there any long term effects from your heart racing like this? My fear is that when it is racing it will beat so fast that it will just stop. This really scares me and last night I could not breathe. I do have a cardiologist, but he just prescribes me Toprol and says I shouldn't worry. Thank you for reading this- I just needed to write about it and hear other experiences because I am feeling worried.

Hi, I did not have a dianosis at the time of my pregnancy. However, I had many problems and was on a lot of medication.. My problems started before I was pregnant though. In my case, I had to take the medications. My resting heart rate was near 200 and my blood pressure was dropping very very low. My worst time was the second trimester. Third trimester I felt great. I took Toprol, Zoloft, Protonix, Reglan, and Nulev during my pregnancy. However, Toprol was considered a class C drug. (effects unknown) My daughter was very jittery directly after she was born. The doctors said it was her nervous system trying to adapt but deep down I have always felt it was the medication. I would go on the advice of your OB when you are pregnant. It is possible to be pregnant with dysautonomia. It is not easy, but the outcome far outweighs anything you may go through. Best of luck, Susan

I often feel like I can't take a breath that is deep enough. It is not a good feeling. I do get it when I am trying to fall asleep. I sleep on three pillows which seems to help.

Hi Sara, I am currently seeing Dr. Janice Gilden through St. Mary of Nazareth Hospital in Chicago. I would be happy to talk to you about her. Please don't hesitate to contact me. FYI- I have an 18 mo old daughter. Did not have a diagnosis when I was pregnant. It was very very difficult but I have a beautiful little girl who lights up my world. Susan

Thanks for the advice and suggestions. I had gotten over my fear of driving until last week. I had my 18 mo old daughter in the car and now am scared to drive her alone. I appreciate your support.