Female – onset of BEB aged 62
It was in 2004 at age 62 when symptoms first appeared . I had an irritation in the inner corner my left eye . It felt like a ” lump ” , but I couldn’t see anything with my magnifying mirror . I Went to my GP who could detect no abnormality .
The Irritation was increasing , so I visited my optician …. again, no abnormality detected .
My GP then referred me to a local Ophthalmologist . I visited him 3 times…..he was most unsympathetic, said nothing was wrong with my eye . My GP then referred me to another Ophthalmologist who said the same thing .
In 2006 I was referred to the Lions Eye Institute . As I was only having excessive blinking in the left eye it was suggested that I take 6 Fish Oil capsules daily as these may settle the ” problem ” . After 2 months I was convinced that I was growing ” scales ” !
Mid year I went on holiday in our Northwest…. by now I had excessive blinking in both eyes , aggravated by glare , bright sunlight and wind blowing in my face .
On my return home I visited my optician again . He diagnosed Blepharospasm (his mother has this condition so he was familiar with it ) and referred me to an Ophthalmologist for Botox injections . The thought of having injections around my eyes was very off putting , but as my left eye was closing frequently and my right eye was half closed I accepted that treatment was needed .
I was unable to have an appointment for 3 months , my life was coming to a standstill – some days I considered myself unsafe to drive my car ; night driving was out of the question as I found bright headlights coming towards me set off spasms . I needed to wear sunglasses in order to watch any T.V and kept lighting low indoors .
Thinking that maybe there was someone else who could give me these injections , I asked for another referral , this time to a Neurologist . On my first visit he agreed that I did need Botox injections but as he had none on hand I would need to make another appointment . In mid July he injected my eyelids . Subsequently I visited him on 2 occasions as I found the injections had little effect, but he wanted me to wait another 6 weeks before repeating the treatment .
By this time I was completely ” stressed out ” … spasms were frequent and severe . I stayed indoors as much as possible , blinds drawn .
I decided to contact the Ophthalmologists rooms again – they informed me that my referral was still current and that I could have an appointment within 2 weeks. Finally , by late 2006 , my 3 monthly treatment commenced .
My eyes still became tired easily and my eyelids felt ” heavy ” . The heaviness was successfully treated by Blepharoplasty .
For me the Botox may take up to 2 weeks to make any noticeable effect , lessening the spasms , then after about 8 weeks the spasms slowly increase for 3-4 weeks prior to next injections .
I now wear specially tinted spectacles which soften the glare from different lighting , especially fluorescent lights . I have dry eyes for which I use different preparations depending on light.
I also have Meige Syndrome , not too serious or obvious to others unless they watched me closely .
I have “ rabbit twitches “ either side of my nose for which I have 2 injections each side when treating my blepharospasm . At times my upper lip lifts giving me a “ snarl “ expression . This I can usually control by opening my mouth and licking my lips .
The worst symptom I have is the sensation of “ choking “ , can’t get my breath or swallow , very frightening at times . This may last up to 3 minutes . Spasming in the throat . Who knows what sets it off .When this occurs I sit quietly and try to relax and it slowly eases.
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