SarahB

Thanks to everyone who has responded to me. It is very hard for me to take a step back because I am so healthy when I am fine that I am able to complete entire semesters with almost no symptoms. I am a very high goal setter and the career I see myself in is not an easy one for a person with a normal autonomic system. I know this does not help my situation, but I have literally had this goal since I was three. I am going to take everything you guys have suggested and really think it over. I will take what you say more seriously than what anyone else has told me because you really do understand what I am going through. It's hard for me to hear from other people, people who don't have this, what I need to do.

That's funny because fish (that is fish without a shell ) is one of the few things that I can eat with no symptoms flaring. I have salmon at least once every other week with no repercussions.

I also want to mention that I'm just coming off of an intense episode that's lasted for almost a month so I apologize if any part of my posts are hard to understand. My brain fog and confusion make me seem like a drunk or so my friends tell me.

Elfie, It's amazing that your parents can help you with college tuition. My parents help me as well, but currently I must keep a job to pay for everyday things. We've had a few bumpy roads during the tough economy so I have to work and attempt school. I am able to do what you seem to do with school, working days and taking days off, with work. School is harder for me, because it's like a train. I start off fine, working ahead and getting all A's, and I literally am completely healthy with almost no symptoms. Then a portion of the track is broken (an episode) but I can't see it, and my train is derailed. I can't get the train back on track because of all the extra work and stress it puts on me. I live a life where most of the time I am completely healthy and then there are times I can barely crawl out of bed. I have disability statements but they aren't so flexible about due dates and absences. They let my profs know that I may be absent but basically don't give me any help with the repercussions of missing class. I went and looked at the But You Don't Look Sick website, and I love it! I fell in love with the Spoon Theory a while back so I immediately bought a poster of it today. It'll be the first poster to adorn my bedroom walls.

Brenda, Thanks for responding. I'm sorry to hear about your daughter, but I am glad she was diagnosed so quickly! I am on medication...I've actually been through so many medications over my life that I refuse to take any more medication than my doctors can convince me is absolutely necessary. I know that many of the medications I was on in the past made me much worse. I am actually under the care of Dr. Gilden. She is mentioned as a doctor with knowledge of this disorder on this website and she has helped me so much. I did know anxiety is a symptom of POTS, but I've been to enough therapists, psychiatrists, and psychologists to know that part of mine is related to school and is from the horrible experiences I had. It is definitely a combination of the POTS and my experiences. I've also heard of Dynakids but by the time I figured I was too old to join. I'm 21 now, but if there are more people there that can help me I will definitely try it. You can check my signature for diagnoses and medications. For those that don't know medical jargon, QD is once a day, BID is twice a day, and PRN is as needed. ~Sarah

Hi, my name is Sarah and I was diagnosed with General Dysautonomia about two years ago when I was nineteen. It took six years after the symptoms started interfering with my life for a doctor to find out what was wrong. My main diagnoses is POTS, but as anyone with this can guess, I have many other diagnoses that go along with this. Since I have been diagnosed and started treatment I have seen a huge turn around, however I still seem to have episodes of intense exhaustion, confusion with brain fog, muscle and joint pain, dizziness, and palpitations that last for weeks. These episodes have caused a problem with my studies, causing me to almost always have to drop all of my courses for that semester and retake them the next time as I miss too much class and homework to catch up. Before my diagnoses I had to deal with school administrators, teachers, and doctors who didn't believe I was actually sick. My stress levels are insanely high relating to school due to an anxiety disorder I've developed from those experiences. This causes a horrible cycle of stressing myself into another episode when I do try to catch up in my classes after I have missed. I have two questions for the lovely members of this forum: If anyone has dealt with classes while dealing with this disorder, how did you manage? I know my case may be special due to the anxiety, but I am wondering if anyone has found a different way of dealing with classes or a different way of looking at things. It's very discouraging to drop classes every other semester. My second question is...what is the average age of a patient with Dysautonomia? I have heard of a few other girls my age that have it, but my doctors took forever to diagnose me with most of my disorders because they just didn't believe I could have them at such a young age. It seems that I was born with all of these and puberty exacerbated them. My mother can list symptoms from when I was just a baby. I must say, when my mom and I found this website it did give me hope. I always felt so alone because at my age I should be at the top of my health, running around like crazy. I have to watch all of my friends run off and do what they want without a thought to how their body will feel the next day or even during the activity. It's nice to know someone else out there is just as frustrated as I am...even if I never would want anyone else to have this. ~Sarah

They found out that I have an enzyme problem related to regular anesthesia but it doesn't sound anything like what happened to you. I'm not sure what happened to my heart rate and blood pressure when I was under for my wisdom teeth removal because the enzyme problem was so big (I was paralyzed because my body couldn't break down the anesthesia as fast as it should) we didn't cover anything else. That and I hadn't been diagnosed with POTS or dysautonomia yet.