Wow, that is a great perspective... You have never known life w/o CPEO. I llike that!
i hate my droopy eyes and recent dr appt in may said DOn't get surgery now, WAIT, I guess i wait till i can't see? Don't know. Looking forward to hopefully finding a job without so many florescent lights, maybe teaching esl as I said. I've heard ppl with droopy eyes have had numerous surgeries, I'm lucky b/c i've had no surgeries really yet. When I went to hospital in May, i asked them what i could do for my eyes cause they hurt so bad, they told me to blink a lot? Really?
A quote from an article i found while doing research about my CPEO
"These findings suggest that the brain stem reticular network is in a state of basal inhibition which is presumably due to a subclinical impairment of the cerebral cellular metabolism. Multimodal evoked potentials revealed abnormalities suggestive of CNS involvement in 7 out of 17 patients (41.2%), 4 of whom had CPEO. These observations document the validity of BR in detecting clinically silent brain stem impairment in patients with apparently pure MM and provide important clues for a further understanding of the underlying pathophysiology." (Can't really post the whole article but it was baiscally saying that people with CPEO could develop a lower amount of blinks than other people. This is also why im assuming my eyes water alot because i don't blink. (added to the fact that people on computers blink a lot less than other jobs, you should really get it checked out).
Don't know about laws in US but in UK people using computers are told to have a break every soft often away from the screen so as to not damage our eyes.
So tell your doctors that you can't be expected to blink more as you don't do it enough as it is! Not sure if i can post the link, (admin i'd like an snwer please)
Not sure about the medical care in the US but I've had 4 operations to reduce my droopy eyes (about to be a 5th in October) but, all you have to think is that it can be done. Could be very expensive in the US but it can be sorted and surprisingly the result just looks the same as people with "normal" non droopy eyes.
Last edited by lorddan01; 09-07-2011 at 04:11 PM.
The following user gives a hug of support to lorddan01: BYU1972 (09-08-2011)
yes, i think their crazy but what i do try to do is stay off computer at home and i sit in darkness, go to bed early with eye mask on my eyes. I also try to look away from the computer when i'm not needing it (at work)... eyes droop so badly with all these lights and computer. hope you are having a good day.
I wanted to reply directly to Msbnana but don't know how!
Hi Msbnana,
Not sure you are going to see this because I notice you only posted once and that was a few months ago.... Just wanted to tell you that when I read your post about your experience with CPEO, I couldn't believe how similar my situation is! I'm also an actor and it has plagued me so much!! You are so right about how it affects us in many areas of our life but in this one in particular. I am unable to show any emotion like surprise or shock because I have no ability to open my eyes further than they are. I hate it so much and hate even more that there is nothing to do to help us.
I'm 39 and was diagnosed like you when I was 16 because of a left ptosis. I had that eyelid corrected when I was about 21 and it's since given me trouble with corneal abrasion since it gets dry. I have terrible light sensitivity and am exhausted all the time. My right eye is now droopy as well but left it still worse. Was wondering what your experience was with the frontalis sling procedure? Would you recommend it to others? Also - how is your dad faring with the disease? I am so worried about what is going to happen as I get older with this....
Anyway - it was so nice to read such a similar case scenario as mine and wanted to reach out to you... hope you are doing well and I hope you read this! :-)
Last edited by jd920; 09-18-2011 at 07:40 AM.
Reason: wanted to reply directly to another member
I went to see Neurology specialists yesterday and they said my tiredness could be caused by a problem with my left ventricle of my heart and they are sending me for a heart ECHO to see how it all looks.
They also said that the whole problem in itself could be related to possible brain pathway problems so I will be having a brain MRI soon.
As a side note I was also diagnosed with asthma and a slight blockage to the airways on Tuesday! It's nice to finally have some explination to my lack of lung improvement after running etc. But on further research MM patients have substantial and sustained amounts of lactate during exercise. So even with an inhaler my fitness problems wont subside. However, as i've always said, suck it up get on with it!
alone
I was recently diagnosed with CPEO and feel crappy all the time. I have no energy, I don't see we'll, I have headaches daily and sometimes I think my family and friends don't believe how badly I really feel. It's hard to find someone to talk to.
The following user gives a hug of support to Silv: Hemlock07 (11-18-2012)
go on cPEO on facebook. there are about 50 of us it
I have cpeo and it sucks. I am been unemployed for a year, separated from my husband, have plantar fasciitis and no insurance. CPEO sucks and some days are ok and some days suck. e mail me beckyluvs2travel@yahoo.coom
much love and prayers my fellow CPEO sufferer.
The Following User Says Thank You to BYU1972 For This Useful Post: Silv (11-06-2012)
go on cPEO on facebook. there are about 50 of us it
I have cpeo and it sucks. I am been unemployed for a year, separated from my husband, have plantar fasciitis and no insurance. CPEO sucks and some days are ok and some days suck. e mail me beckyluvs2travel@yahoo.coom
I've got hearing loss as well. A lot of neck and shoulder pain to. The list goes on. Just feel all around crappy. Don't know how to pull myself together.
silv, feeling any better? I had my eyelids probed aug. 2012, helped a bit. Lower eyelids lifts scheduled next month. how have you been? i did move from MD to FL...
