Chiari Online Support Group

Looking for college students to talk to about dealing with symptoms

Hi everyone! I'm new to the group and I'm hoping that being a part of this will help a lot. Here's a little bit about me: I was diagnosed in Feb/March of this year after getting an MRI for having random short bursts of extremely painful/crippling headaches nearly everyday for months (it escalated from a few a month to everyday in Dec 2014). I have an aunt that I am very close to who also has Chiari along with POTS and Mast Cell. I have Chiari 1 and these symptoms: Exertional headaches, nystagmus, sensitivity to sound, fatigue, aphasia, stumbling over words, and numbness in hands and feet. Recently my symptoms have increased to where my head and neck are constantly in pain and I get exertional headaches within the pain I already have in my head and it's just a lot of pain that is hard for me to handle. I'm struggling with how to deal with the pain/symptoms while continuing to go to work 3-4 days a week, and going to class 5 days a week, and participating in extra-curricular activities. I'm a sophomore in college and I'm looking to talk to other college students to see how they deal with symptoms- specifically with having a job, having to go to class/having to miss class, etc. How do you deal with it? Also, in regards to sound sensitivity- how do you deal with it when you can't get away (i.e. During a class or extracurricular activity)? Please respond if you have any insight! Thanks!

Hi, purple. Welcome to our community. Sorry for late response. You seem such a special person. I admire how you are trying to move forward positively and cope with your Chiari symptoms. I am not currently in college and I don’t know that this is at all possible in your situation, but have you considered online education for your coursework? I pursued a certificate program in college this way and it made all the difference in managing my pain. Hopefully our young people and other college students here will also share experiences with you.

Hugs!

Laurie

I am also a sophomore in college as far as dealing with faculty I have found blunt honesty to be the best way to see any reaction. Go to your teachers and say hey i'm doing my best to handle X could you please try to keep the classroom environment calm and quieter. I make it clear to every faculty member they will have my best effort. If needed get a note from you doctor and take it to the people over student services It is their job to help students. Most people teach to help others. Almost all listen, hear me out, and agree to help as they can. You will miss days just keep people informed. Sound issues foam ear plugs help me immensely step out when you need to ,again just discuss what you intend or may need to do with the faculty. Extra-curricular activities I only do PTK which is just meetings and some service hours. I don't work and still feel overwhelmed at times. Just as a general rule you must learn to listen to your body. One main thing I've learned is you must know when and how to say no to people overdoing whatever wrecks me personally. Regiment X time to school work X time to relax/unwind alter the times with workload as needed.

Hi,

I am also at university and too found carrying on with normal university life, work and managing the pain extremely difficult. Also the added emotional burden of chiara was very difficult for me to handle. Originally I did not tell my course convenor, tutor or even my friends because I didn't want any sympathy or special treatment but this only led to me missing lectures, falling behind and feeling pretty isolated. I have now told them and I feel that they are giving me a great amount of support, not just with lectures and assignments but also emotional support. I really would urge you to do the same, if you have not already.

Rhea x

Drink water, stretching. Change posture, have good posture, get a gel pillow (Costco), T#3's

Hello,

I am active duty and a college student, my diagnosis came this year as well (March 2016). I had exertional headaches since 2008 but, did not realize that is was related to Chiari. I have an 8mm with a syrinx and have pain in my neck, arm, both hands, legs and ear. I have blurry vision, fatigue and photosensitivity. I deal with all this by educating myself mostly but I limit my work hours, once I feel a lot of pain I go home. I complete housework in small bursts and wear shades when driving, stuff like that. I find that taking a muscle relaxer at night works well and a heating pad during the day is awesome.

Hi,
I’m rexently diagnosed and also in college. Unfortunately just had to take an incomplete for this semester because my symptoms are so bad. I also have nystagmus (since birth) and found that interesting. I don’t know about you but Chiari is interfering with my college life in many ways especially not being able to go out with friends which is really difficult. Here if you want to talk!