Blepharospasm Bulletin Board

I am so sorry you are having to deal with all of this - especially at your young age.

I am 52 years old - but have some similar problems. I am a physician (MD Pediatrics) and have suffered from years of migraines with facial pain, which 5 years ago progressed to corneal pain, dry eye, severe photophobia and blepharospasm. My eyes burn, sting and then stabbing pains if I try to keep them open. I have spent a lot of time trying to understand this condition. I believe Dr. Rosenthal has some very interesting ideas linking this condition to a brain issue in pain processing similar to chronic regional pain syndrome with dystonia developing in the affected area. Fibromyalgia shares some of these features of messed up pain processing. I do have some of the features of more generalized fibromyalgia - but I don't feel that I meet enough of the criteria to meet that diagnosis.

I really want to encourage you to try botox - it can give immediate relief while you work on other things - and may give you ability to do many of the things you enjoy and are so important . It is used by many with blepharospasm with great results. The side effects you read about of swallowing and breathing difficulties are only seen in those with underlying muscle disease, like generalized myasthenia gravis, or in those using botox around the neck and throat for dystonia in those muscles. Use of botox around the eyes only has no risk of drifting to those muscles. In fact, botox may help you avoid problems with the spasms spreading to your face and neck - the more you use those muscles due to the eye spasms, the more likely they will develop dystonia there as well. I know it sounds scary to have injections near the eyes, but it is really not bad at all, as most people here will tell you.

The more common side efects with botox around the eyes are drooping eyelid if some drifts to the muslce that lifts the lid - most of the time this does not happen, but if it does, it resolves in s few weeks, and has no long term problems. The doc then lowers the dose or changes the placement a bit the next time. The other side effect that can be a problem in people like us with eye pain, is that it can dry the eyes more because they stay open more. You will need to pay attention to using drops and protecting the eyes from drying at night with gels and a moisture mask and use wrap aroudn glasses outside.

Botox takes some time to get the right dose and sites. Most docs start low and go up gradually - so you have to try it a number of times before you can judge how well it might work for you.

Some other resources for you that I think could help a lot:

1) Read "The Brain's way of Healing" by Norman Doidge, MD, especially the chapter on Chronic Pain. - available as an audiobook I think
2) Join the facebook group "Neuroplasticity for Blepharospasm" - explore the "files" section for more resources
3) Visit the website drdavidhanscom.com - it is for chronic pain, but many of us are using the principles to re-train our brains from dystonia - start at the begining and follow all of the links and really do the steps - you will be amazed.
4) Consider the Wahl's Protocol diet for autoimmune disorders - some with fibromyalgia have responded well to this.
5) join the dry eye facebook group - several there have corneal neuropathy and have tried various things. The moderator Rebecca Petris has this. She just posted an article about Dr. Rosenthal.
6) Consider autologous serum eye drops - several with corneal neuropathy have felt these have helped when other drops have not. They contain factors that can heal the corneal nerves, especailly in those who have had Lasik related problems.
7) try reading by a yellow light bulb (lowbluelights.com for examples)
8) Consider FL-41 tint on wrap around glasses - 30% tint for indoor use, 70% for outdoor use. (axonoptics.com)

The advantage of being so young is that your brain has amazing abilities to heal itself - if you work to teach it new pathways. It will be much faster for you than us old folks. You have the potential to see a lot of improvement in your condition.

As far as meds, I would recommend staying away from clonazepam or any benzodiazepines due to their long term harm to the brain - you are too young to start these meds. If you try anything, I would recommend Lyrica, as it may help with the widespread pain and give you restorative sleep until you get other ways of doing this are in place. It may not help the spasms much or the eye pain, but may help with generalized pain. I'm glad the LDN is helping.

Know that you are not alone, and there is a lot of hope for your condtion!

Jill