This last Saturday marked 9 months since my brain stem surgery. I’m always grateful when I think back to where I was back at the beginning of the year and how far I’ve come in such a relatively short amount of time. There are still a few issues I’m dealing with, though, and the main one is my nystagmus condition.
Nystagmus is defined as the involuntarily movement of one’s eyes. People can either be born with this condition or acquire it later in life. I acquired it as a result of my cavernous malformation and brain stem surgery. It’s hard for me to actually pinpoint exactly when it started happening, whether or not it was before or after the surgery. I had never even heard of the condition until I was later diagnosed so it took us a while to actually figure it out. While I was in the hospital, the shaking was so bad and severe that I would just say “I’m nauseous and dizzy. The room won’t stop shaking.”
These days my nystagmus is no where near as bad as it was in the hospital. Some days are better than others. Nystagmus is highly affected by one’s stress level and the amount of sleep (good rest) that they get. To learn more about the condition itself, I recommend starting with the nystagmus Wikipedia page. Majority of nystagmus eye movement is horizontal, shaking from left to right. My nystagmus is actually vertical, my eyes shake up and down. Every doctor I’ve been to says how unique it is and that they’ve never seen my kind before.
I’ve been inspired to create this blog post to add to the limited information that’s out there about this condition. I’ve researched and researched to learn more about it but it’s hard to connect with other people who are actually living with the condition. I’ve compiled two lists of tips for people with nystagmus. I hope someone out there finds them beneficial.
Tips for Nystagmus Sufferers
- Keep your stress level as minimal as possible.
- Get plenty of rest.
- Wear contacts over glasses. The friction helps to reduce movement.
- Give your eyes a rest. Close your eyes and just take a moment to breathe. This helps to minimize your stress and give your eyes a break throughout the day.
- Work on your hand/eye coordination as much as possible. Ask your doctor or therapist to go over exercises with you that can help.
- Be VERY CAREFUL when around stairs. Always do your best to be aware of your surroundings including any curbs, steps, or holes in the road – because our eyes tend to shake all the time, it’s hard for us to recognize these differences below our eye level.
Nystagmus Driving Tips
- Don’t drive at night, ESPECIALLY, avoid highways.
- Drive with caution at all times.
- Avoid high traffic times & areas, especially, parking lots where people can jump out at you unexpectedly.
- Avoid highways.
- Nystagmus is a handicap. See your Doctor & ask for a parking pass if you think it will be helpful for you. If you are a student, I highly advise this – busy campuses and parking lots are extra dangerous to be driving in if you are not cautious.
- Do not drive when you are extremely stressed or tired.
- Try to focus on the car’s bumper in front of you to minimize shaking.
Don’t let your nystagmus discourage you. Living with nystagmus is a very doable thing. At times, it can be very frustrating. Trust me – I know, but it’s a condition that I’m grateful to have because I’m still very much alive and well. It’s something you can learn to live with. On a lighter note, when my husband catches my eyes shaking – I always tell him that it’s just proof of how much he rocks my world. 😉
If you’re living with nystagmus and looking for more support, check out this Nystagmus Support Group. Also feel free to follow the Nystagmus Network group on Facebook. The Nystagmus Network is a charity stationed in the UK and America for the advancement of nystagmus support, research, and education.
xtine danielle 