Hello, New Member With Some Questions

[SarahB]

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

[bkweavers]

Hi Sarah and welcome to the forum! You've come to the right place to ask questions and get the support you need.

I'm very sorry to hear about your POTS diagnosis. To answer your question about age, my daughter was 10 yrs. old when she became ill with POTS. Looking back, the symptoms began right when puberty started. On the day she became ill, she had a fever, body aches, dizziness, and headaches. The fever and body aches went away after a few days and the dizziness hasn't left since. That was 3 years ago. Her POTS doctor told us that she was young when she got POTS. The median age is usually around 14 for adolescents. I have noticed other adults on here who have also said that they noticed symptoms their entire lives.

You mentioned having an anxiety disorder due to some experiences. Do you know that anxiety is a symptom of POTS? It is a symptom that my daughter also struggles with so I hope that makes you feel a little better.

Are you on any medications? Certain medications can help with brain fog, anxiety and your other symptoms. They aren't a miracle cure but it may help you to function better. You may also want to talk to some of the other college-age people on here to get advice from them on how many classes to take and how they are getting thru college. Right now, I don't think taking a full load is something you and your body can handle and maybe if you would only concentrate on a few courses at a time, you will have better success overall.

Have you heard of the Dynakids website? I don't think you're too old to join but I know there are people on there in college who I think could be a huge help to you! I know there are many that have gone on to be successful in college and after. My daughter is a member on the kids forum and I'm a member on the parents forum. It's another great place for advice, knowledge, and support from people who understand.

Hope some of this helps you.

Take care and God bless,

Brenda

[Elfie]

Hi!

I am a 20-year-old female student (was diagnosed when I was 19, had severe symptoms for two years prior to diagnosis). School is really difficult. I am lucky enough to have support for my parents and they help me pay for my tuition that my scholarship doesn't cover and help support me. To be honest, that is how I get through school. I don't work, am not a regular at extracurricular activities and organizations (although I do try to attend when I am up to it or am interested), and right now I don't have much of a social life. The first two years I was sick it was much harder because I was living with roomates and was very active with friends/a serious relationship. Now I live alone and see my friends on my own terms. It may not be true for everyone, but since I have been living alone I do much better. I get sick far less, my house is cleaner (with less work), and it is less stressful. My place is where I can come to relax and for the most part I can do whatever I need to meet my needs (no one complains about excess AC or my sometimes odd sleep schedules). Stress was really affecting my POTs and draining my energy, so think about a way to reduce it.

I always take between 15 and 18 credit hours (5-6 classes) because my scholarship mandates it. It can get really rough. I guess my biggest tip is to not get behind in the beginning. The start of classes can be stressful getting everything together, but it is really important to stay up on reading even when you aren't feeling well. I try to plan ahead and often spend weekends catching up or working ahead on projects because I am often tired and sick after a partial day of classes. The number of classes you will be able to take also involves the type of classes they are. Everyone is usually good at one type of class. Some people like a lot of reading, others like projects, others like those 3 tests a semester classes. Find out what is easiest for you and ask other students which professors teach like that.

I have also been lucky enough to schedule my classes only 3 days a week during several semesters. This really helps. It gives me time to work on school and also to rest. I don't have to get up the day after I have to go to class (I am usually wiped).

Visit disability services. You will probably have to bring a letter from your doctor or another record that indicates your diagnosis. I recommend the College brochure from Dynakids that someone mentioned above. It really is a good way to explain POTs to the disability services ladies. I have time and a half for tests (important for writing those essay tests with brainfog), am allowed to have snacks and water, and don't have to stand up for presentations, and a few other things. They also wrote me a letter about absences and flexibility of due dates.

I personally would recommend the But You Don't Look Sick site for tips. They have a student forum which has a lot of great tips. There are also lots of POTs/EDS-ers on there and other young people with conditions like lupus and MS that can cause brain fog and some of the other symptoms we deal with.

I am not being medicated or treated for my POTs at all right now because I haven't been able to find a local doctor willing to treat me. I generally have a resting heart rate in the 90s sitting, that goes up to 115 if I am thinking, and 130-150 standing. If I walk it is 165-200 bpm, so I am always tired. Hopefully you do have a doctor that can work with you. If it is hard to concentrate in class because walking all the way from your car makes you dizzy, don't be afraid to ask for a parking placard so you can park closer.

Feel free to Private Message me if you would like to talk more!

[SarahB]

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

[SarahB]

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.

[SarahB]

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.

[pinkbubbles1680]

Hello there,

I'm sorry to hear that you have awful brain foggyness. My neuro suggested provigil and this medicine can also help with fatigue so I thought you should know.

I'm in college I'm freshman in my first semester, I was diagnosed with POTS when I was 17. Its been rough there have been lots of ups and downs. I took 16 credit hours last semester and had fridays off to sleep and I did well I wasn't super sick and I made it through. This semester has been pretty awful I had to drop down to 13 credit hours and even with that I've been struggling a bit to keep up. The important thing for me has always been to plan school days so they are short and in the morning. Mornings are my best time of day when I'm usually feeling somewhat okay. If I only have one class in the morning even if I feel awful I will still go because I know right when its over I can go to sleep or do whatever I need to do to try and feel better. Another thing that I have done is started planning ahead. Get projects done early, start work early, when you're feeling good try to get a lot of things done. It helps a lot with my stress levels and being sick if I plan ahead. I am registered with the office of disabilities at my university. It's great to be registered just to show teachers that your under some extra stress have a debilitating medical condition. My teachers have been extremely accommodating to me. Always try to keep your teachers well informed on how you are doing. E-mail them if you cannot make class and tell them you are struggling and they may be able to help. Like elfie its important to eliminate stressors in your everyday life. I moved into an apartment and out of a dorm a couple months ago because it was just not working for me. I still have roommates but they aren't too bad and next year I will try to get into a single room.

Hang in there and feel free to contact me anytime

~alex

[Elfie]

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.

Hey Sarah,

Yes, I'm lucky to have help from my family paying for things. I have worked and gone to school in the past and it was very difficult. I generally find most employers may be flexible with working around students' schedules, but they generally aren't flexible enough to work around my class schedule AND my illness. This year I haven't had any luck at finding work. I have to have a job where I am sitting. I can't wait tables, work fast food, or bag or check at a retail outlet. With the economy the way it is, there aren't many job openings for office-type work. Despite my dad having lost a job within the past year and medical bills, we make it work.

Your situation and mine do seem to be different. Perhaps you are taking too much on when you are feeling well. I deal with moderate symptoms everyday with more extreme episodes maybe a couple of times a month. There are some times when you really can't work on school because brainfog and being sick just makes it worthless to try. I try to utilize my good times and get as much done as possible. I also eliminate things that are triggers for episodes (germs, stress, late nights, ect.) I try to never miss class unless I am throwing up, passing out, or unsafe to drive (or ride the bus).

Maybe online classes would be better for you. I generally think they are easier to work ahead in. If you are always a week ahead, then when you have an episode you don't have to worry about it. You can also attend class from bed. If possible maybe you should try to take classes where you can easily get the notes without missing anything/the prof doesn't take attendance, or classes with less daily/weekly homework and a few bigger projects instead.

Yeah, disability services usually cannot enforce anything about allowing absences or late work. Some professors are going to be jerks about it. However, I have found most of my professors that I have had to explain my condition to have been very understanding. Although the disability services people generally don't encourage sharing about your condition with professors, I have found that it is kind of important with some aspects of POTs (like, passing out). This may not be the case with you since you are usually fine and only have severe episodes. See if you can talk to your professors and make sure that they realize when you are out sick that you are flat on your back in bed and can't be working and that you come back to class as soon as possible so you may not have makeup work done the day you come back because you have just been able to start functioning again. See if you can work it out so they let you turn in missed work at a set date maybe during the next week or so.

I hope that you can find something that works for you and your own unique circumstances!

[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.