Attending College With Dysautonomia

[tjmerohr]

My son is a senior in high school and currently looking at colleges to attend in the fall. My husband and I have concerns about him attending classes and living in a dorm setting while battling dysautonomia. He was diagnosed about a year ago, missed the entire second semester of junior year, and is struggling this year. He is keeping up with the work but has a hard time getting up finding the energy to stay in school. He leaves the school for lunch as he can't handle the noise and commotion of so many people in one area.

He is looking to attend UVA in the fall, and we had a great visit a few weeks back where the school seems to be familiar with dysautonomia. They will put him up in a single room in a dorm so he can shut out people and distractions, but we are not sure that will be enough. He really needs 10 hours of sleep a night to function the next day. You can't tell the people on your floor to shush when you aren't feeling well. We are thinking of getting him a condo or a place of his own off campus so he can get the rest and quiet that he needs.

Are any of you currently in college? How are you managing keeping up with classes? Can you find places when you need the dark and quiet? Any suggestions would be greatly appreciated! Thanks!

[Lenna]

My son is currently in college. He just finished the first semester of his freshman year. It's going great so far - far beyond what I had dared to hope. He is living in the dorm in a medical single. When we saw his room on the first day, we were very dismayed because it's in a very isolated part of the dorm. He (we) had some real concerns about being able to meet new kids and socialize while living in that room. But as it turned out, he's met plenty of kids while also having a quiet room where he could have undisturbed sleep. It was the best room they could have given him.

Here are my suggestions:

Let the school know that not only does he need a single, but stress that he needs one in a quiet location away from lounges and elevators, etc. Chances are, they have a few rooms in a really quiet spot.

Buy a white noise machine for his room. We got one on Amazon.

Get him used to sleeping with ear plugs now. It takes a while to get used to it, and my son tried 3 or 4 different kinds before he found one he could tolerate. He uses Ohropax wax ear plugs, also from Amazon.

He starts each morning with a blue light shining on him. It's supposed to increase energy. He's not sure if it's really doing anything but then again, he thinks maybe it is. A sleep doctor recommended it. It's called Philips goLite Blu Light Therapy Device. You can get it from Amazon or costco.com.

Other accommodations that the college gives him are 50% extra time for exams, and willingness to TRY to reschedule morning exams to the afternoons or evenings.That was only an issue once so far, but they did reschedule it for him.

Also, the school gave my son a device called Live Scribe to use during his lectures. It lets him audio record the lectures and somehow he can integrate his notes with the audio recording. I've never actually seen it in action, but he says it's helpful. He still has to be physically present in the lectures but if he's really tired and can't concentrate, at least he can review the recording later.

Some schools will have some classes accessible online as well. That would be a huge help. Ask about that.

I hope that helps! Good luck!

Lenna

[Leigh8]

I developed dysautonomia in the summer before my sophomore year of college. Of course, being a college student with these kinds of symptoms is difficult, but I managed. I am glad I did not leave school because of my symptoms. I would have been sick whether I was at school or not – at least I was sick and got a degree though!

For me, sitting in classes were the hardest part, since my main symptom is dizziness/lightheadedness. I constantly felt like I was going to faint in class, which in turn gave me a lot of anxiety. I could never pay attention to the lectures because of this. I almost always went to class, but did most of my actual learning at home on my own through the textbook/readings. I learned to always sit near the back of class for an easy escape when I was faint, and to make sure I had water and food on hand too.

I had roommates and lived in crowded dorms all 4 years, and it was fine. I think it’s worth it to live in the dorms to help make friends. Also, I wouldn’t want to have been labeled as the sick girl or something by living off campus alone!

Don’t worry, I think he will do great!

[terradactyl]

Hi!

Sorry to hear your son's been having such a hard time. I know that *****.

I'm in my third year of school right now, and college has definitely been a different experience than I expected. I haven't been able to stay in any of the club sports I wanted to, my social life is pretty hit or miss based on how I feel, and classes can be a struggle. It doesn't help that I've lost a lot of the routines that helped me stay more stable in high school -I don't sleep enough most nights, I skip meals and don't drink enough fluids, and just generally try to ignore that I can't function the same as everyone else. Definitely doesn't help things, but I think I am doing okay.

I have not made any sort of formal arrangements with my school, it isn't something me or my parents ever thought of. I know that not taking too many credits helps. I do put a lot of effort into choosing classes that are at 'good' times and ones that won't have early exams. I still have a hard time with attendance, and sometimes even when I do make it to my lectures I just space out. For me the most important thing is to have a good relationship with my professors, make sure to let them know early on that you are excited about their class and that you want to get as much as you can out of it. Communication is really important so that when things get harder or there are bad days/weeks, they already know that you are serious. Seems to make them a lot more willing to make exceptions or help out when I end up struggling. It's also a really good idea to find a buddy in every class, not a 'hang out all the time' friend, but someone who you can count on to let you borrow notes or let you know what you've missed. I know that I will end up missing classes at some point, so getting someone in the class on facebook or having their number can really help. I think the only other advice I'd have for classes is to not try and 'take it easy' too much on days when you're feeling better. I like to push myself when I can, even if it makes me feel bad after--its better in my opinion to feel bad with all my work done than to feel bad anyway and have a ton of work that I put off.

As far as the living situation, I think the dorms are really nice--its easier to justify going to classes when they are only a few minutes' walk, instead of a commute, traffic, and then walking once I got there. Plus it is easier to meet up with professors and classmates, both academically and socially. I know that for me, the academics-focused dorms have been a godsend. They have a lot stricter rules and 24-hour 'quiet hours,' which have been really nice. And they aren't really bad for socializing, even if you wanted to party you could visit a friend in a wilder dorm. If there is any sort of option like that at his college, I'd recommend looking into it. My only issue has been roommates keeping the temperature too high, other than that they have been really understanding of me when I'm not feeling well. If he gets a single room that wouldn't be a problem at all.

[Jacquie802]

I take 3 courses online. I wouldn't be able to attend "live" classes due to my symptoms.

[jknh9]

My symptoms were just starting to get serious when I was an undergrad but I did have some issues. Sleep was a big one. I had a single room, but the noise from outside was often too much for me to get a good night's sleep. I slept much better once I moved to an apartment off campus my junior year. However, I can definitely see the benefit of being closer to classes. Unfortunately it's often just the luck of the draw as to what kind of dorm situation you find yourself in. I lived in an honor student dorm and it was one of the noisiest housing situations I've ever experienced. Oh, and definitely make sure he can have an air-conditioned place. Many of the dorms at my undergraduate school (in Ohio) did not have AC, it was awful the first few weeks of class. Some of the older classroom buildings didn't have AC either, so make sure he has a fan or cooling vest or something. One time it hit 108 degrees during one of my classes in an old building where some of the windows didn't open. No way could I do that these days.

I would recommend talking with instructors before the beginning of the semester to explain the condition and try to work out some options if he gets really sick. Most classes have attendance requirements, but often professors will make exceptions for special cases. One of my biggest issues was sitting through class. I felt dizzy, nauseous, and very anxious because of the POTS. I found it helped to sit near the door and take a bathroom break if needed. It's also easier to slip out unnoticed that way if it gets bad.

[tjmerohr]

Thanks everyone for you input! Keep posting with suggestions that may help him - each bit of information helps exponentially and gives us hope that he can go onto college and fulfill his dreams!

[jangle]

My experience was a lot like Leigh8's. I would suggest inquiring on getting your son lecture notes provided by the university as it can be difficult to pay attention during lectures. Also I would advise laying low on the alcohol even though there is tremendous temptation to abuse it during the party years. As for the dorm living, I'm not sure if I would have been able to handle that constant activity level especially if it was disrupting sleep. A good alternative would be to live off campus with room mates who're considerate to your son's needs. That way he's not isolated but he's not bothered either. I personally did the off campus apartment route which was nice for me.

[Libby]

I had some form of dysautonaumia through high school, but my POTS didn't severely impact my life until junior year of college.

I lived on-campus my junior year, then moved off my senior. Getting to class was MUCH easier living on-campus. Not only do you have friends to drag you out of bed if you oversleep (a frequent occurrence for me) but the walk to class is generally much shorter than the walk from the parking lots. Between that, the hassle of finding parking and the commute time, it averaged out to an extra half an hour of sleep.

I was in a single by junior year, but one of my closest friends in college, who had severe POTS from high school through college (weird to randomly know another POTS person, I know. But lucky. I never would have been diagnosed if I hadn't known her - after we put 2 and 2 together and laughed about her 'infecting' me, I bypassed my well-meaning but useless PCP and went straight to the POTS specialist), anyway, she had a double for 2 years, a single for one and lived off-campus her senior year. She survived. She had bad days where she couldn't get out of bed, but her roomates and professors understood. She also had extra time on exams which, looking back, I'm jealous of. I didn't have any accommodations. But I survived too. It's surprising what you can handle when you forced to.

Freshman year, I would have him be in the dorm, if at all possible. He'll miss out on a lot if he's not. First semester freshman classes are generally the easiest, so it will give him leeway to adjust. If it's not working out, move out for the January term. But I'd definitely try first.

[Hoshistorm]

I am currently in College for my BA in Psychology. For me, doing online college is best for me. I attend Ashford University Online, and am currently sharing an apartment with one other person. My friend knows that I have POTS and is very good about giving me quiet time and extra rest.

Ashford University's full time online program consists of taking one class every five weeks. This works great for me because I only have to focus on one class at a time.

When I first started, I had been having a lot of problems with POTS. However, I was able to work on my school work without leaving the house and on my own schedule. Some days I did not even crack open a book because I was soo sick.

Also, Ashford is very good at working with people who have medical problems. They have an application that you can fill out about your illness, and they will work for you.

I am sure other Online University's have a similar setup, you would just need to research them. I chose Ashford because it is accredited nationwide, and the setup works well for me.

I wish you the best of luck in finding a good college.

[kt42487]

Sorry to hear about your sons dysautonomia. I am currently a college student and in my last semester. I take online classes as well as hybrid classes (half online half in class). I find the classes that I have to attend to be very difficult and I end up very dizzy about 20 minutes into the class. What I have found that helps me is to notify my professors of my condition, this allows me to eat and drink in class (salt and water can sometime pull me out of a dizzy spell). I also sit close to the door so I can get up leave class, walk around get my blood circulating again and then I come back into class and I am usually able to sit for another 20-30 mins. As for the dorms, I would suggest ear plugs a good mattress pad and a CD with calming noises. My biggest concern for living on campus would be in regards to campus foods, they are generally unhealthy and full of a lot of additives that my bring on more symptoms, I know for me personally when my diet is off I feel worse all around. In this sense it may be smart for your son to rent an apartment where he has his own kitchen and can prepare his own meals. If you worry about him not getting the full college experience due to living off campus, check out a roommate finder online, there are probably students that rent home/apt/condos off campus that have a room available and you can go sit down with them and interview. That way he would not only have his own room as well as access to a kitchen but may also have roommate who are sophomores juniors or seniors that could help him find his way around campus and give him a good support system. Also I would suggust for him to schedule mon, wed, fri classes. While it's nice to try to cram your schedule into tues. and thurs. and then have a 4 day weekend every week, those classes are going to 75 minutes long and it makes for a long day. Mon. wed. fri. classes will be a quick 50 minutes. My final note, find out what the university's withdrawal policies are like. Should he need to withdraw for medical reasons the university may or may not refund your money in full. I had to completely withdraw from the fall 2012 semester and despite have full documentation I was only refunded 1/2 of my tuition. Good luck to your son on his next adventure in life, college can really be a blast!

[peregrine]

One thing I would really emphasize is to get things set up with the university's disability services program (under whatever name it goes by at the relevant university). They can help with housing (as you mention above), but can also work on medically necessary absences (e.g. too faint to go to class), having a notetaker who will attend class with him to take notes for him, moving exams to the afternoon and sitting them separately from other students in a quiet place with snacks/water, trying to schedule classes (or at least study/recitation/lab sections) in the afternoons, helping with any mandatory PE requirements, shuttle services to get across campus (e.g. from dorm or parking lot to class building and between buildings, many schools have this and not just for students in wheelchairs), etc. They will need info from your son's specialist, and then you can meet with them to talk about accommodations. The other main reason I'd suggest this is that having the official stuff in place is good legal protection in case discrimination, instructors not allowing accommodations, medical leave, etc become a problem - better to have everything set up up-front and less stressful for everyone.

Good luck! I didn't have dysautonomia in undergrad (developed it in grad school) but if I were in undergrad these days I would be taking advantage of a lot of the things I listed above!