What is nystagmus, and how can it be treated for the eyes, like how can my eyes?
get aligned as it was before, as before I had the disease, is it possible or not? no, I wasnt born with that, it actually happened November 1st, and it cant seem to go away, any suggestion?? I'm so sorry about your diagnosis. This is a very tough condition to live with. Be prepared for a bit of a shock.
Nystagmus is a rythmic involuntary eye movement. There are several types, based on direction of eye movement. Downbeat nystagmus is when they drift upwards and snap down very quickly. Horizontal is side to side. There are others, but these are the most common. With nystagmus, there is generally a null point where your eyes get "stuck" so they stop moving, and you can use this to help you see a little better. I'm not sure about the other two, but downbeat's null point is looking all the way up. It kinda hurts if you hold it too long, but it makes the world stop bouncing for a second so you can get your bearings. Also, some things make it worse, such as being tired or certain lighting conditions. Flourescent lights are the worst because of the pulsing, harsh light. Try to increase the natural lighting in your home. Soft yellow works best for me.
According to my opthalmologist, nystagmus is almost always a neurological condition. You need to have an MRI scan of your brain to find out what's causing it. Be prepared for a very emotional and financial roller coaster from this point forward. Check with your insurance to see about requirements for coverage and what you need as far as referrals for seeing specialists. Make sure the doctors you see are on their list of preferred physicians if that is how they work.
Once the neurosurgeon (don't waste your time and money with a neurologist...they don't do surgeries) determines what has caused the nystagmus, he'll tell you what options you have. Basically, whether you're a candidate for surgery or not. He'll read the MRI and do a full neurological exam. Some of the exercises and questions sound silly, but there is a purpose to every one. You might find out you have more symptoms than just your eyes.
You'll want to have a consult with an opthalmologist as well. If you can afford it, I would suggest seeing them in this order...
1. Opthalmologist (or Neuro-opthalmologist if one is available in your area) for inital examination. This will give them a "before" reference to use, and they can give a referral to the neurosurgeon if need be.
2. Brain MRI with and without contrast (dye)
3. Neurosurgeon for full neurological exam, diagnosis, and surgical options.
4. Surgery
5. Followup with the Opthalmologist or Neuro-Opthalmologist. If you have successful brain surgery, you will have to wait 6-12 months post op for your brain and eyes to "settle" before any optical surgeries are done to see what effects the surgery had on your eyes.
6. Accept any remaining symptoms to be permanent at this point. It may not seem like it now, but you will eventually get used to it. Over time, you'll find ways to adapt. You won't have perfect sight, but you'll see good enough to function.
If all goes well, you should be free of doctors and as good as your eyes can get in less than a year and a half. I know it's a long time, but once everything is done, you'll be a lot better off. Honestly, the worst time for me was between diagnosis and brain surgery. Getting through the actual surgery was nerve-wracking. Once I woke up and realized I survived, things drastically improved. I was in the hospital less than a week and was released from my neurosurgeon at 8 weeks post op with no restrictions.
Both my doctors said nystagmus was permanent and does not improve over time. I guess I was one of the lucky ones; after brain surgery and strabismis surgery eight months later to correct a fourth nerve palsy (misaligned "lazy eye" from birth) my nystagmus has greatly improved. In certain lighting conditions it almost becomes latent. I still have it, but I've learned to live with it.
Good luck to you and you're in my prayers...Blessings If it's not bouncing or shaking, then it isn't nystagmus. Get a second opinion. Good Luck Report It
No there is no treatment to realign your eyes if you were born with nystagmus.
You must treat the disease that is causing the nystagmus...is it an inner ear problem, or trauma?? If it's inner ear problem & it's treated, your eyes should go back to normal.. There is tons of information about your disorder. Google "Nystagmus" |
