Since July, I have to strain to heavily to be able to keep my eyes open, especially when I am walking, trying to keep eye contact with people, and more especially when I am outside. When I am driving, I have to keep eating, so that my eyes can stay open. My eyelids used to twitch sometimes, but this has stopped long ago. I have been seeing my Doctor and Optician. They have not helped me at all. I just can barely keep my eyes open now. Since reading other posts, I have looked up Benign Essential Blepharospasm. I do not sleep enough because I have a child that has Autism. I am always looking for solutions to my daughter's problems. This makes me not to have enough sleep. Sometimes I sleep 2 or 3 hours, or none at all.
I do not have any other health problems, except that my blood tests showed that I am seriously anemic. My doctor said she could not believe that I am not tired or weak. Anyway, I am now taking folic acid and iron tablets. But I am scared of my eye problem, I do not want to become blind. I can only open my eyes when talking, reading or eating.
Opthamologists say that my eyes are perfect. The new Opthamologist I saw yesterday gave me eye drops for dry eyes, AGAIN, and said if there is no improvement, I should come back in one months time. Is there anything I can do???
I personaly think since you are sleep-deprived, that's why your eyes want to close. Might I suggest you hire an RN nurse to come stay the night at your home a couple nights a week, she can sit up with your child whilst you sleep... stay in a room away from where your daughter is. This was done for me when I was in the hospital after a car accident, because I was on Demoral shots every four hours, I would wake up screaming and terrified and hallucinating. I was just 20 years old, and my mother of course could not be with me all the time, so she hired an RN nurse to watch me at night, she would comfort me when I lost it.
Also, if you're fortunate enough to have a local or nearby support group for parents with autistic children, they can pool their resources and provide additional time for parents to be away from their kids from time to time, but if you're the only one, you might can visit with another group for children with disabilities. All parents MUST take a break from the demands of special needs children, or they'll run out of gas, which you have. Your eyes are telling you something.
And if you take your child to a kind of daycare while you work, don't pick up your daughter when you get off work; instead, pick her up two hours later, and catch a 90-minute nap... people sleep in roughly 90-minute sections. If you do not work and/or do not use the services of a daycare, treat yourself like a working woman and either find one that takes disabled children or contact the Catholic Church, they often provide a daycare that can handle pretty much anything that comes in the door. That way you can sleep during the day for as long as they will keep your daughter, this will help even a few days a week.
I think, too, if you haven't already, you can find an autism website that has forums between parents with autistic children, and they can also post back even more ideas than I am providing. I might add that anyone you leave your child with, including the RN to stay up at night in your home, you can type up a couple pages of "instructions," if you will, for the worst they can expect and how to deal with it. Initially your daughter may resist new things and people, but even with autistic children, they can become accustomed to any situation you create for them.
But let us suppose that you really do have a neurological problem that has nothing to do with needing to sleep. Obviously visiting a neurologist would be a good idea, he should be familiar with a problem like yours and know what sorts of tests to do, to find out if there is a nerve that has been compromised, to where your eyelids want to stay closed... the eye docs know about eye nerves, but from what you say, have not done the kinds of tests a neuro can do for any problem originating in the brain, perhaps, or even a tic type neuromuscular thing.
But I do think if you consider that it is almost instinctual for a human being to get so tired that, even tho they want to remain awake, those eyes closing is automatic and cannot be stopped. Since you yourself say you get very little sleep AND you have anemia, even tho you visit a doctor and tell them you're not tired, that's probably the determination and adrenaline talking... but your body says otherwise. It is hard to let go of control of a loved one, especially a child, who can't help but make very large demands on people in charge of their well-being. But if you get in a car accident, or you make a forgetful mistake at home that might cause harm to your child, like leaving the iron on to answer the phone, then when you weigh that against letting go for a few night's sleep, or daycare, then I believe you can justify giving yourself a break.
Keep us posted on what a neurologist might advise, and let us know if any of my suggestions wind up helping your eyes stay open! And if I were you, today or in the next day or so, I'd ask someone who is close to you and cares about you, to please take your child for 24 hours, and you go home, lock the doors, unhook the phone, draw the curtains, get some videos, some delicious takeout, and just CRASH for the duration. Then see how your eyes do... I'll bet they'll stay open. GG
This pranayam will relax you and help you sleep better. Do it for 5 minutes with the child doing it as well to help the child's condition.You do it for 15 to 30 minutes twice a day.You will notice a difference in days.Do it in a fun way with the child.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
Thank you so much for those words of advice, I will try harder to get enough sleep, and also practice the relaxation techniques. It might be so that my lack of sleep has brought this on. I just hope that my eyelids are not permanently damaged.
Hi there. Blepharospasm begins with excessive blinking or eye irritation. In early stages it may occur with specific precipitating stressors like bright light, fatigue etc and later frequently during the day. These disappear in sleep and after a good night’s sleep. If you concentrate on a specific task it may reduce frequency of spasms, with condition progressing spasms may intensify so a person may become functionally blind due to abnormal basal ganglia functioning.
Treatment options may include botulinum toxin, drugs like trihexyphenidyl, an anticholinergic drug along with others like diphenhydramine, antispasticity agents like baclofen also used. Benzodiazepines like diazepam and clonazepam are also used.
Consult a neurologist for the best help. A detailed evaluation of the type of anemia should also be sought after to know the cause of anemia, whether iron deficiency or hemolytic or megaloblastic anemia. Take care.
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