Blepharospasm Bulletin Board

I know that everyone who has this condition can have slightly different symptoms and triggers. Over the years I have struggled to find a doctor that could convincingly provide a diagnosis and suitable treatment. I know a lot of people have dry eye that is related, but I do not believe this is the case for me - the dry eye drops (including the preservative free have zero effect).

To summarise the treatment options I have tried:
botox (various strengths), clonzepam, trihexyphenidyl, benadryl, and a few others I have forgotten. I have also tried a zillion eye drops for dry eye, and none of them have helped. None of these have helped a noticeable amount.

I have never spoken to other people who suffer from this condition so I wanted to ask a few seemingly silly questions:

1) When I experience the spasms I can hear a sound associated with the muscles struggling. It sounds like a wind against a microphone. I cannot find anything online about this. Do other people hear this?

2) I can cause a spasm to occur if I look upwards and hold a stare for more than 5 seconds. If other people do this, does this cause a spasm?

3) I find my condition is worsened especially during the summer. I find certirizine hydrochloride is the best hayfever tablet to work. I know some people find relief in using the US form of benadryl. I would say using these tablets will reduce the condition by 30-40%, so reduce on average 8 major spasms to more like 5/6.

4) I find alcohol helps but I read on most forums that this does not help many people. I know people will say that it has a relaxing effect, but alcohol also has many other effects, including as a calcium channel blocker. Reading online I can only see about 10-20% finding this helpful.

5) So far, the only thing I have found to work has been olaptidine / opatanol / patanol / pataday (various strengths/ brands). I put it in my eyes and can feel the relief straight away. Once in effect, it will reduce the chances of eye spasm for the next hour at least 80% generally. However, unfortunately, after several years of using this my eyes built up a sensitivity from this so I cannot use this anymore. I hope if I mention this that it can help someone. It was mentioned by a lady who used to give me botox injections and is the best thing I have used. Again, reading online, I find very little about people using this for blepharospasm.

6) I think my eye spasm may be different from many others who have acquired this problem. I have always had this condition from birth/childhood, which makes me think that blepharospasm may not be the true diagnosis as having this condition from childhood seems quite rare.

7) The problem with eye spasms is that there are so many conditions that have similar symptoms. My doctor thinks that it is a blink reflex that causes it but I am not at all convinced. I find perfumes, ikea, subway, and trains are really bad for my eyes. My eye lids feel like they are burning and need to cool down. If I lie in bed before waking up or even opening my eyes, my eyes can spasm so even without blinking. Likewise without any different blinking pattern, it I will know that a spasm will occur around 10-15 seconds in advance. If it was caused by a blink reflex I would most likely know.

8) Of course, I take a lot of care with my eyelid margins as well and use blephasol and other ringer solution (boric acid) based eye wipes to keep good hygiene. I find this helps a little bit as well.

9) I find a small benefit in chewing gum but obviously this is no good for work. As a preventative measure I think it can help. But generally once a spasm has started, it is impossible to stop. I have tried touching various parts of my face and different actions but not much works unfortunately.

10) Some things I find as triggers can be loud noises, temperature differences (like fan heaters on trains), flashing lights/constant movement in my peripheral vision. And bright lines are generally not good. However, there is one exception, bright sunlight shone directly into my eyes will actually really help my eyes going from real discomfort to being ok. I always find this surprising.

I hope some people can find reasons in some of the things I have said above as they seem to differ a little bit from what I have read in forums for people with blepharospasm. Life is a struggle, sunglasses really help, but it's difficult because people are so quick to judge.