Hi, My name is Renee from Australia age 22! '
Was Diagnosed with CPEO in 2008, had the frontail sling operation for ptosis on both eyes in 2009 which was a success, minus the dry eye etc due to the operation.
Am now experiencing health issues associated with CPEO-Fatigue, constantly tired and a Lack of energy, always sore & aching, aswel as irregular heart beat/Palpitations.
Have read other threads on here in regards to CPEO, but was hoping for a recent update on everyones condition and what measures/tests that can be done for finding out causes or ways to better my life with this condition and the constant lack of lifelessness!
Hi, I also have CPEO - haven't had surgery yet, but likely will soon - my dr at johns hopkins recommended a different procedure than the sling based on how much ptosis I have currently. My eyes feel heavy a lot and tired. I take various vitamins (CoQ10, riboflavin, L-carnitine) and am thinking about taking creatine. Im not sure if the vitamins are actually doing anything, but I take them anyway. I get checked out periodically by a cardiologist. I have occasional palpitations, usually early in the AM, but I cant tell if thats just nerves or related.
Thank you for your reply! I opted for the silicone slings so if my body rejected them then they could be removed and not have the muscles permanently fixed to a position. It has been a year since my surgery and have had a magnificant deterioration in eye site since having the procedure, i now have to wear strong glasses alot of the time, where before my site was perfect. Im currently only taking CoQ10 but hoping to find out more when seeing my doctor in a few weeks. My body is definately weakening/aching and sore continuously, the total lack of energy is hard to deal with, even working at the moment isnt an option physically The heart palpitations are a scary feeling also!!
I have CPEO also in conjunction with a neuromuscular disease. My official "diagnosis" has changed over the years, but I think as of right now they're going with either Limb-Girdle MD or Mitochondrial Myopathy with CPEO.
My CPEO has affected my eyes starting at 45 but have not affected my sight in any great deal. I just use reading glasses. I tend to get tired sooner and have not the stamina that otheres have but probably am average with the general population.
My CPEO has been secondary to the muscle weakness in my body. That is, until recently. I noticed a few issues with my eyes, but it never really bothered me much. In the last few years, I've had more issues with double vision and that has gotten even worse. When I turn my head to the left, everything is doubled. I think they've determined that my right eye is giving me the most problem, thus the double vision when turning to the left (my right eye won't move far enough in that direction).
I've also noticed that if I nap, when I wake up my vision is completely doubled for a few minutes. I've been known to fall asleep in the car (as a passenger obviously) and have recently started taking catnaps in the afternoon. When I first wake up, it's very bothersome because I can't do anything for 5-10 minutes because ALL my vision (even looking straight ahead) is doubled.
While I still drive, I don't drive often or any distance because of the eye problems.
I am 66 and had a CDI unit but it has never hada incident in the past 3 years. The heart medicin has helped a lot. I had the tendons in my eye lids shortend and that helped for about 5 years. I get tiered and can sleep if things get boring around. Sitting in church or meetings if the speaker is poor I have a hard time concentrating. I feal the best if I am active and if I eat lighter meals, but that is not always fun.
I probably should say that I have been fighting fatigue sinse my early 20's. I use to take naps at noon when I worked at industry and ate a lot but didn't start to gain weight till 50. I knew my hear missed a beat when I was 30 and that it could quite but never did. This thing cpeo is a bump in life that can be lived with into your 80's as I see in some of my aunts and uncles. Enjoy each day. I am from Canada for intest
Renee, I have just been diagnosed with CPEO and would like to hear from others and what they have done to feel better. I too am always tired. My biggest challenge is always looking like I am sleepy. I am thinking of having surgery but not sure what else to do. Anyone that can shed some light I am listening....
Its always nice and that little bit more reassuring when you hear of someone else who has the same condition as it isnt very common.
As for the tiredness i havent overcome that yet, I do take CoQ10 3x daily at 150mg which does seem to help!
The only way i was diagnosed with this condition is that i too always looked sleepy, so i went to a doctor thinking i could get my eyelids raised and it bit fixed-only to learn there was an underlying condition that i had!
I did opt for the silicone sling brow lift as the eyelids were at such a stage that they started effecting my site by covering half my eyeball (which in turn the strain on my forehead and eyes caused headaches). I have had much success with the opp but understand there has been many failures. Personally my body took well to the procedure & knowing it could be reversed if need be was also nice to know.
I am more than happy to answer any questions you have as i too have found this site helpful in my quest to find answers.
I have CPEO as well...some time I am tired and some days I am not...I dnt take any suplements that everone always talk about...But I did have eye lid surgery on both eye to lift my eyelids it helped but one surgery dnt go right...how old are you and can you move your eye cause I cant move them at all....
I am 23 this year, was Diagnosed 2 years ago. Have limited eye movement both left to right and up and down. My eye site has deteriorated since my operation and i now require glasses full time.
How old is everyone else? and how long have you been dealing with CPEO? Does anyone have any restrictions to do with this condition, as in the muscle strength and tiredness etc
You just have to live with it. I am able to do anything that others do, just not always as fast or as long. I have had all the test some you realy don't want to go through. I am 66 and experiance fatigue for years but did not know what it was. It started in early 2o's. I am willing to talk about it.
I find that light snack during the day help but a big meal gets me for the neat 45 min or more. If I stay active I am generally ok. Have had it for years and only diagnosed in the pas 6. I just know why I was different. It took 15 years to figure out why my eyes were like the are. If I am out in the cold for a long time they don't focus well till i get warmed up. I think Florada sounds great for the winter.
I am currently 37 tears old...I have been dealing with CPEO since I was 22...My eyemovement has gotten worst over the years which require me to wear prizimns in my lenses....I wish there were contacts that could help cause in my lesft eye the lense is very thick even with hi-index....what operation did you have?