Hello and welcome. I'm glad you joined the group. I became ill at 16 after a bout with mono. I was later diagnosed with CFS/ME, NMH, and POTS. I did get through a bachelor's degree, but it was quite difficult. My advice is not to try to finish in four years. I paid for it for years. I remember my roommates found me passed out in the closet once. And it wasn't from the typical college revelry. I was sick as a dog. So, I feel for you greatly. I am so sorry you are so young. I would say, continue to try to rest as much as possible. You can have a life, but you will have to make accommodations for yourself. Your friends may not understand, but you have to do what's right for you. Much love.

I'm sorry that you are going through this. My problems started when I was 22. I went through college healthy, but made it through grad school with CFS/POTS, so I know what it's like. I had to do an adjusted schedule and I finished in 3 years instead of 2. I also got a handicapped parking placard, which I know isn't fun for a college student, but no one has to know what's going on if you don't want them to. Do you have a fitbit? I would recommend getting one so that you can track your heart rate and steps per day. Everything syncs to your Iphone if you have one. This way you can track your activity level and heart rate and see what leads you to a crash. You can then adjust your schedule or day. When you were diagnosed, did you find out your anaerobic threshold? This number is different for everyone, but essential to know for anyone with CFS and especially POTS. Once your heart rate gets above your AF, lactic acid begins to build up faster than your body can clear it away. It's usually low in people with CFS/POTS and has to be monitored so that you don't crash or trigger a POTS episode.
Also, I would really advise drinking SmartWater. It is full of electrolytes and will help keep you hydrated. It's helped a lot with my POTS symptoms.
It's important to keep your leg muscles in shape with POTS. If you can do light walking, I would change the exercise to something like recumbent biking or swimming.. usually easier for a person with POTS, but definitely check with your cardiologist to make sure it's okay.
Did your doctor mention anything about hypermobility? Around 90% of people with POTS have EDS-Type III. Just something you might want to look into.. (could explain the stomach problems as well).
Oh, finally, I know you are young, but I personally found that birth control pills made everything 1,000 times worse. I cannot stress this enough. I truly think they were a huge trigger for my illness.
I'm happy to help with any other questions you have. Even though it's hard, you can still go on to have a fulfilling life, it will just be different.
We have to stay strong and keep fighting for answers! :)

Bluebonnet, I've never heard of an anaerobic threshold. Who determines it and how?

Thank you for leaving me advice, I really appreciate it :)

@Bluebonnet08: I've never had my anaerobic threshold measured. I didn't hear my cardiologist talking about it either so I've never heard of it before. How would it be measured and by whom?

I think my mom has a fitbit that she doesn't use... that would be a really helpful tool. I just took a walk today that triggered an attack so I really should wear it when I'm exercising to make sure I'm not overdoing it.

My cardiologist didn't talk about EDS either... I've never dislocated anything. My understanding of EDS is quite basic, but isn't having more susceptibility to dislocations an essential part of the disease?

Did you do anything specific for brain fog besides the water? I take short, hour long Spanish lessons twice a week and I struggle with brain fog during them. I want to find some ways to stay alert during long lectures.

Hi and welcome -
Sorry you are going through this so young :(
I went to school while I had CFS. I was older - 37 when I started. I went at night so it's a different situation but some things are the same.
My thoughts:
You would certainly do better to live with your parents than on campus unless the transportation to class would be a real issue. Then you can have the support and help for things like laundry and meals and can use your energy for class and homework.
Buy a dedicated voice recorder for classes like that Spanish lesson. Record it with the instructor's permission and listen to it again at home if you zone towards the end.
Be kind to your body re: food. Everyone is different but I would highly suggest eating Paleo to keep your mind as clear as possible.
That backpack? Get a rolling one!
Take less than a full load of classes if possible. Better to get a degree that takes longer than to have to drop out period.
This one is hard to say but I will - think about what your career will be. As you have CFS and other illnesses, doing something active or mind draining may not be in the cards. It wouldn't be practical to get lots of school loans (if you are taking them on) and then not be able to do your work in your chosen field. I was able to work in an office doing computer and paper work until I was about 15 yrs into this illness when I was 49 yrs old. I can still do some today off and on like being here with you folks and doing the family bills, etc. But if I tried to be a teacher or a vet or a full time musician (all on my list) I'd have failed.
Don't be put off by the idea of eventually using a scooter or powerchair. It's just a means to get from point A to point B. If using a powerchair means you can get to class less winded then heck, get one!
Ok, I have a virus this week, so that's all I've got.
Wishing you the best - and wishing you peace.
btw, your parents rock, moving with you like that :)

The anaerobic threshold is the rate at which lactac acid starts to build up in the body faster than it can be eliminated. It is determined by a CPET test at a specialist or cardiologist office. I think it's essential to know this number, as many people with CFS/POTS have lower rates than we should. It explains in part, why we are so tired and why we have relapses (constantly going over this rate).

EDS- Hypermobility doesn't always include dislocations. There is also some debate about whether Benign Joint Hypermobility and EDS-III are the same thing. Either way, it is highly associated with POTS, that's why I mentioned it. You can do a basic assessment on yourself using the Beighton Scale:
http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

This website has lots of great information about POTS and how to avoid triggers: http://dinet.org/index.php/information-resources/pots-place/pots-what-to-avoid

Also, I would definitely use the fitbit.. I love mine!

good luck vic. this is the best sight for advice. do your best everyday & then rest when you need too. everything else will hopefully fall into place. i was diagnosed at age 28. have a couple part time jobs to keep me busy & so i can rest. best to you!!!

I was about to graduate with my Bachelors degree when I got sick. I ended up going back to school four times in 2 years trying to finish my degree, but every time I had to drop out, eventually I got another infection which complicated things even more and never finished. My recommendation is just to take it as slowly as you can. Don't push yourself too much. Take care of yourself. So many people graduate college later these days. I'll be sending Prayers your way!

I have had severe chronic symptoms for 10 years WHILE GOING TO COLLEGE and during this time having to REPEAT, REPEAT AND REPEAT classes. I want to educate you AND warn you -- because I was not informed on this process of REPEATING classes.

After repeating too many times, the director's, instructor's signature on the registration form will no longer be good.

If you repeat TOO MANY TIMES, the college will restrict you on how many credits you can take and eventually DENY you of taking classes. Then there is a process of a mediation board where you fight to stay in college. They will want letters from doctors so save your medical files like doctor names, etc.

If you're not feeling well, I recommend to take the break instead of repeating and not passing.

I kept repeating because I felt at the time -- NOW, that I'm on this new medication or new dose, I'll be feeling better and will be able to progress and get out -- this kind of hope kept repeating itself but was never achieved.

Looking back, I should have not enrolled and waited till I felt better. I also felt bad that I was ruining my good GP but then I began to not care and figured out years later that NOBODY is going to want to see my GP or even ask about it.

Within the last 22 months my health has improved and I'm actually beginning to progress in school; it's not enough progress for them to stop limiting my credits but I am relieved at this point that they're not HARASSING me to go to a mediation board.