CPEO (Chronic Progressive External Opthalmoplegia)

I have recently been diagnosed as having CPEO - chronic progressive external opthalmoplegia. This is a mitrochondrial disease that manifests itself with droopy eyelids, double vision, limited eye movement, and (sometimes) general muscle weakness in other parts of the body. I have also had migraines for over 20 years, so when I started researching this new thing I discovered that it is also often associated with migraines.

CPEO is usually diagnosed in young people, but in my case I am 61. I had been aware of the problems listed above for about the past five years, but attributed the droopy eyelids to aging, and the muscle weakness to aging and a bad health year that included two serious broken bones and surgery to fix them. As far as the limited eye movement, it was a subtle progression and of course you are not aware of how much your eyes move. I did notice that I was turning my head a lot more to "look both ways" etc., but with so much else going on I didn't think too much of it. My neurologist suspects that I have had this all along, but that the illnesses and traumas of 2008 accelerated the progression dramatically.

I offer this just as an FYI and also wonder if anyone else out there has CPEO. I have found a few online support groups, but it is a very rare disorder and there is not much activity. There is no cure, and the only treatment for the eyelids (surgery) is not an option in my case because I risk total blindness.

The good news is that I can report only 6 migraines this month!

Molly

Molly,

I'm sorry about this new diagnosis being added to all the other health problems you've endured.

Are there any recommendations for limiting the progression of the CPEO? Do you experience ocular pain with it (just wondering if the eye pain is more than the photosensitivity normally experienced with migraine)?

Hang in there. Better times have to be on the horizon.

Becky

Thanks, Becky, and I really am OK with this. I do have a neuro I feel good about, and am planning support systems for down the line if needed. I don't have any ocular pain at all. I read on the support boards that my worst fear, having my vision totally blocked by the drooping eyelids, can be addressed by scotch tape if all else fails. The miracles of modern medicine!

As far as recommendations, the only thing the doctors say I can do is to stay ahead of the muscle weakness in my legs by lots of leg lifts and buttocks tucks (thank you, Richard Simmons) - right now, it is tough for me to climb stairs. That is a combination of the leg weakness, the vision issues (double vision, obscured vision, lack of depth perception) and the fact that in my bad 2008 year I broke both my left shoulder and right wrist. Can't do much of an assist on railings with either. So, I am becoming a leg lift fanatic.

Wow, I've never heard of this. Thanks for filling us in.

Just one more little wrinkle in our stories. I personally am convinced that migrainers share neurological quirks - if we can connect the dots, we may find some answers in our lifetime. Or at least get better at managing our disease. The CPEO diagnosis has in a way been freeing - trouble swallowing, general muscle weakness, sensitivity to heat due to not being able to perspire properly - all are part of the big picture with the disease. And here I thought I was just a neurotic wimp!

Molly

Molly,
I am 62 and have CPOEO. I was diagnosed in 2008, had the eye muscle lifted in 2008 but it did not last long. My doctor decided to do the more invasive surgry of the frontal sling. What a difference in my life \. It was very sucessful. My eyes are open and my field of vision is great. Do you have any other synmptoms besides drooping eyes?
Waghappy

I am 30 years old i was diagnosed with cpeo at 18, it all began when i hit puberty in 5th grade my school pictures my right eye was drooping, everyone called it a lazy eye, but then in high schooll i would get migraines on a daily basis and have to be sent home from school. After 4 years of this and my eye drooping worse, my other eye began to droop due to working harder, after many eye tests and dialations, i was finally diagnosed with cpeo, and the stuff the doctor printed up for me was scary to say the least but what stood out the most was how i could die in my sleep from being unaware of needing to swallow or the inabiity to do so. my migraines r very severe i get tunnel vision, and facial paralysis, around my lips goes numb, and my right arm from the elbow go numb, and there is no warning as soon as i get the tunnel vision its coming, and many times it makes me physically sick, glad to know i am not alone guys thanks rbz

I've been dealing/suffering with CPEO for 20 years. I also have had surgery but it didn't last long. I'm interested in the sling under the lid if anyone has had it. Now I'm noticing my eyes will not turn in to read so I tend to just use one eye. I had a prism in my last glasses but I still am having problems. This results in headaches. Also my neck is really weak and stairs are such a challenge for my legs. Please share any thoughts.

sawatson wrote:I've been dealing/suffering with CPEO for 20 years. I also have had surgery but it didn't last long. I'm interested in the sling under the lid if anyone has had it. Now I'm noticing my eyes will not turn in to read so I tend to just use one eye. I had a prism in my last glasses but I still am having problems. This results in headaches. Also my neck is really weak and stairs are such a challenge for my legs. Please share any thoughts.

I hope you still look at this site. I would love to correspond with someone who understands. I just had another visit with an ophthalmologist. I am also exploring the sling surgery. Did you do it? How did it work out if you did? I had two other surgeries that were minimally effective and only short-lived. I would love to know more of your story. This is a very lonely disorder.