sstephan

Hi Kate, I am new to the forum also and got my diagnosis not too long ago. I have a very long story as well and went through endless tests and times thinking I was just going crazy. It's weird because when I am feeling well I forget about having an illness and I think that life will just go back to normal. But then I will get sick again and remember how bad I do feel at certain times. It seems to go in cycles. I know what you mean about wondering about the future. Please feel free to email me at anytime. I am thirty now, but first was diagnosed with just autonomic dysfunction when I was 18 too. (through a positive tilt table test!) Thinking of you, Susan

Hi I am just wondering if any of you wear medic ID bracelets. I have been debating about this one. Part of me would feel better if I had one in case of black outs. However, the other part of me feels as though it is just a reminder to myself that I have a chronic illness. (when I feel good I'd rather not be reminded about it) If you do have one, what does it say? Also- just a question - my dysautonomia symptoms go in waves. I may feel good and then out of nowhere I will have symptoms for several weeks. Is it the same for all of you? Susan

Hi I am new to the forum but had to respond to your post. My sister became paralyzed from the waist down several years ago days after a colonoscopy. She was in rehab and extended care. She was tested for all sorts of things and they never could figure out why it happened. Now that I have a diagnosis of dysautonomia, I wonder if it is somehow related? It is just so strange reading your story about the paralysis. Does your daughter has dysautonomia too? I have a sixteen month old daughter who we suspect is having dysautonomia symptoms yet it is not confirmed. I know how draining that is. I can also relate to the husband factor...my husband who really is a great guy, just cannot understand my illness and I believe that he feels it is "in my head". Very frustrating and quite a toll on a marriage. Please feel free to email me at any time if you would like to talk. Susan

Hi, When did you notice that you get bloodshot eyes? Is that a symptom of POTS? Several of my coworkers have seen me during an attack and have commented that my eyes are bloodshot so I was wondering if there is any relationship. This may seem like a stupid question, but how do you get the hosptial to admit you for an IV? Before diagnosis, Iwas in the ER more times than I can count. I always began to feel better once the IV was administered. I have often wondered how I could just go get an IV when I am feeling really bad. Usually I would have to wait in emergency for hours before I am even seen. It's great to feel good all day isn't it? Here's to many more great days ahead.. Susan

Hi, My doctor told me that most POTS patients have IBS as well. Digestion is of course linked to the autonomic nervous system and therefore goes hand in hand. My GI doc has said I have IBS as a diagnosis of exclusion. I have my doubts but I don't know what else it could be. I had my gallbladder removed and ever since then I get terrible pain attacks in my back. The last one I had was after eating baked beans. The pain is the most intense pain I have ever felt in my life, worse than childbirth. It is so severe that of course the POTS symptoms (shakiness, tachy, sweating, faint, etc) all kicks in at the same time. The pain lasts for about twenty minutes until the spasm is over but it knocks me to the ground. I have some constipation problems but the pain is my main issue. Have you been prescribed any medication for IBS? I take Nulev for the pain spasms and it seems to help a little. Good Luck, Susan

Where is Dr. Grubb that many members have been talking about? The Mayo Clinic? Does anyone see Dr. Gilden at St. Mary of Nazareth Hospital in Chicago?

Hi, First I would like to thank everyone for being so welcoming as I am new to the forum. I have a question regarding dental work. Does anyone have experience with novicane bringing on symptoms? I had a bad experience from a root canal at one point. I felt so weak and faint while I was driving home. My dentist does not understand dysautnomia whatsoever. He lowers the chair so far down that my head is way below my heart. When I tell him I need to come up, he says yes in a just a minute. Well a minute can stretch much longer and he doesn't understand that i need to come up NOW! I have been to several dentists and need to have a root canal finished as it is causing me problems. Any advice/suggestions/experiences with dental work? Thank you- this is really stressing me out. Susan

Hi I self diagnosed as well. After seeing tons of specialists (you name it I saw it) I mentioned dysautonomia to my GI doctor. I had been diagnosed with "autonomic dysfunction" almost ten years ago. However, when I began to have other symptoms involving other body systems, I was told that the autonomic nervous system had nothing to do with it by my cardiologist. A little more research on my own and I presented this to my neurologist. She agreed with me and sent me to a specialist who diganosed it. This took over two years and I spent many days crying after leaving yet anther doctor's office who wanted to just give me a prescription for anitdepressents. Or better yet when I was pregnant my ob/gyn gave me a speech about how female hormones can bring about feelings of anxiety and depression. I firmly believe when navigating through the medical field you have to be your own advocate. Best of luck

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.