Blepharospasm Bulletin Board

Definitely different in that you've had BEB since birth. Other things seem quite the same though. I assume that you have seen or are being followed by a Neurologist?

Comments and thoughts on your above post:

1. I do not hear the sound that you mention and have never heard this mentioned before.

2. I can also cause spasms to occur. Closing my eyes tightly and then trying to reopen them will trigger a spasm. Looking up quickly will also trigger a spasm, when I am lying down. Various things can and do trigger spasms for people.

3. Allergy issues will usually worsen people's BEB symptoms. Various antihistamines do seem to help with this. In the absence of allergy symptoms, those same medications also seem to help some people with their blepharospasm symptoms apparently due to anti-cholinergic properties. I find that Allegra helps to improve my BEB symptoms but also gradually stops being very effective for this. Decongestants also can provide improvement in BEB symptoms for some, due to their stimulant like properties.

4. Alcohol does not improve my symptoms but others say that it does improve theirs....like you've found.

5. Antihistamine eye drops can also be helpful in relieving spasms, like you mention. They can also help with a ptosis (droopy lid) which sometimes results as a side effect of Botox injections. Antihistamine/redness reliever eye drops are not something that should be used long term. People either develop sensitivities to the product itself or develop a rebound effect where symptoms get much worse as the product wears off, causing one to have to use it again. Or it just gradually stops being beneficial. Again, there are warnings and problems with using these for more than a few days at a time. Someone that gave you botox injections should have known that you shouldn't use this long term.

6. Yes, it is rare for someone to have Primary Blepharospasm from birth and you are probably correct in thinking that this might be different than others with Blepharospasm. You may have very similar symptoms but your primary diagnosis may be something else with your blepharospasm being termed a Secondary Blepharospasm....meaning that there may or could be a known cause for your blepharospasm symptoms.

7. Agreed. Many of the things that you mention can indeed be triggers for spasms but not actually the primary cause of your Blepharospasm. I typically do not "know" that I will have a spasm 10 to 15 seconds ahead of the spasm. You seem to be getting some type of sensation or warning ahead of the spasm. I don't get that. Mine just happen...like a blink would.

8. Good eyelid hygiene is a must. I use an eyelid wash solution at least once a day and also just wash my eye area with plain water and a fresh washcloth, at least twice more throughout the day and often more times than that. I go through lots of washcloths on any given day. I presently use a bottled saline product, several times a day along with preservative free eye drops.

9. People use various sensory tricks for helping with their spasms. Like you've mentioned, some people find that chewing gum helps. For others, it might be, eating, talking, humming, singing, some physical activity like dancing or painting or touching different areas on their face. I find that I do pretty well as long as I am up and active and moving about and concentrating on something (although that sometimes doesn't work either). The problem with sensory tricks is that once the brain gets used to them, they frequently stop working.

10. Your triggers seem to be fairly common with others with Blepharospasm. The bright sunlight doesn't really fit in with most as typically there is a preference for dark and cloudy days. I'm different in that too as I do much better with bright sunshine. Cloudy days will worsen my symptoms and leave me squinting from the glare of the clouds. I rarely wear sunglasses but that is different from my early days when I needed them. Anything that causes me to squint to see will trigger a spasm. Bright and very adequate lighting in my house is very important in controlling my spasms.

Thanks, Brad