Blepharospasm Bulletin Board

Thanks for your interest and throwing some ideas out there. We all benefit from such conversations.

BEB since 1999 for me with an onset of 2-3 months before I was totally shut down and functionally blind. I was diagnosed fairly quickly but didn't have the best injector initially. I saw two more Neurologists for injections during the next two years, with the last one (well versed in Blepharospasm) telling me that he thought that a myectomy would be helpful...as I had apraxia.

The botox worked back then to the point of lessening the strength of the spasms but I could not get my eyes open. It was not a ptosis but just an inability to open my eyes, once they closed. The myectomy did help with this and the botox became more effective for me.

During this first 2 years, I was put on Klonopin, Benadryl and Adderall. I stopped the Benadryl after a year or two as I knew that it was contributing to my dry eyes. It was a very effective threesome though, that I've read about over the years. The combination of a stimulant, a tranquilizer/muscle relaxer type drug and an anticholinergic drug...and seemed rather harmless compared to many of the other medications out there. We used to talk about this combo, quite a bit on this board. When one is basically functionally blind, you'll try all kinds of things....which I have.

If I'm remembering correctly, the highest dose of the Klonopin that I took, was 0.25mg 3-4 times a day. Most of the time I didn't take that much. I did find it to be helpful early on. Over the years, I just wound up taking 0.25mg at bedtime with the occasional extra tablet if my symptoms increased. The original Rx was written for 1 mg, four times a day. I'm very glad that I never tried that, even though the neurologist that prescribed it, encouraged me to build up to that dose.

I weaned myself off the Klonopin 3 years ago. I didn't feel like it was making a difference in my symptoms unless I increased it and I wasn't willing to do that...knowing that the same thing would happen again. It took me months to get off that lose dose. Things were very bad for awhile with my symptoms increasing and then they seemed to level out.

This is when I noticed first that my symptoms were worse and that I didn't think that the botox was working as well. Ups and downs of course through the botox cycle but overall, worse. That trend has continued, with me asking my Neurologist to vary the sites and at one point, about a year ago I switched to Xeomin for two cycles. The results were worse with no improvement in spasms and increased side-effects.

I had some rather poor injectors before I found my last one, that seemed to be working out well. During that time, I was plagued with side-effects from the toxin due to technique or sites or dosage. After two years of functional blindness, I was pretty happy with keeping my eyes open at all, though.

I do continue to take Adderall 10mg, am and noon. I think that initially, I took just one tablet a day or took 5mg, twice daily and increased that to my present dose, early 2000's. I have periodically stopped it completely...for a month or so and then gotten back on it. A drug holiday that has been helpful in keeping the same dosage. I have not done that in while due to the increase in my symptoms and it just not being a good time to stop it. It's been over a year. I used to do it when things were going fairly well so that I wouldn't be too adversely effected. I've never had withdrawal symptoms from stopping it cold turkey. It was always obvious that my symptoms would worsen and that I did better on the Adderall. It just, over time, stops being as effective. I do still notice improvement with taking a dose and am reminded by my symptoms if I forget.

I do think that that is part of the problem. I don't wish to increase the dose though and life is not such right now, that I want to deal with even worse symptoms by totally stopping it. It's going to have to be done, though.

Another possible cause in the dramatic increase this last time is that we once again altered the sites...leaving one out completely....the one in the left lash line (pretarsal) as that lid continued to be somewhat droopy. But the spasms are back in that lid full force. The lower and upper lid quivers back and forth and I have pulling spasms from that lower lid also. The left nasalus (which I always have injected with 2.5 units per side) has spasmed to the point where that muscle has obviously enlarged. The right side is doing fine. This increase in symptoms is predominantly on the left...with the right side just following along at times.

The change in sites might have sent out some new nerve branchings but I still don't get why it is quite as bad as it is over the area that is involved. It's almost like that side was not injected. The increase in symptoms started by the next day, after the injections.

No new medications or supplements except adding Hydrochlorothiazide 25mg for BP (something that I had taken for quite a few years...after the onset of BEB...but had stopped a couple of years ago). I also stopped Toprol XL 25mg, 4 years ago...after having a cardiac ablation. I felt like it helped with my BEB symptoms, when I initially started taking it for a heart arrhythmia and my symptoms increased when I was told to stop it after the ablation. This is another medication that shouldn't be stopped quickly. My doctor didn't warn me about it....just said to stop it. I finally went back on it and weaned myself off over a couple of months.

I was in a motor vehicle accident a little over a year ago and continue to have some right sided neck pain from that but it has slowly gotten better.
But nothing else major has changed in the past couple of years...yet my spasms seem to be more intense and more frequent.

I do feel like the botox is still effective as it relaxes some of the musculature...it just didn't seem to, on the left side of my face, this time. I feel that my symptoms are either escalating, or my Adderall is becoming less effective...needing a drug holiday or the injection sites are off in some way...leading to ineffectiveness or new nerve branching in some areas....or a combination of all of it.

Thyroid is tested every year.

Thanks for your thoughts, Jill!