Blepharospasm Bulletin Board

Which medications can help blepharospasm?
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Posted by: pgh2869 ®
03/15/2013, 09:41:35
Hi.
I realise that no medications can cure blepharospasm, but are there one or two major ones which are used, that I could try? I have heard of CLOZAPINE and also CLONAZEPAM. (These are the names here in the U.K., not sure if the same in the U.S or Canada?)
Are these any good? Are there any others?
(I am a 54 year old man, with severe dry eyes and have had blepharospasm for 7 years now; I have botox injections but with limited effect. Was due to have an upper-eyelid myectomy, but was put off due to warning of potentially increased dry eye post - operation.)
Am keen to try medication if it may help, particularly as this condition is starting to grind me down emotionally and psychologically!
ANY SUGGESTIONS RE MEDICATION WOULD BE APPRECIATED...PARTICULARLY ANYONE WHO HAS FOUND A REAL BENEFIT FORM ANY MEDICATION.
Thank you all.
Paul



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Re: Which medications can help blepharospasm?
Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: kathy in australia ®
03/15/2013, 18:30:32
I have tried Artane with no success as the side effects were debilitating.

I am currently trialling Vimpat, which is for epilepsy, having great success so far. I am still having 3 month Botox at my neurologists recommendation, but I am going to talk to him about pushing it out to 4 months as the side effects from Botox means I am worse post botox than I was before!

Having seen my success so far with Vimpat, he is trialling other patients on it. Haven't heard yet how successful this is. Other people on this board have tried it with mixed results. I found it after someone posted a youtube clip of a lady trying it with spectacular results.




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- kathy in australia Top of thread Archive
Posted by: pgh2869 ®
03/15/2013, 18:47:37
Kathy,
Many thanks for your reply...very interesting. I'll do some research on Vimpat.
By the way...I love your country...my son lives in Perth and I've visited a few times.
Thanks again,
Paul



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- kathy in australia Top of thread Archive
Posted by: pgh2869 ®
03/15/2013, 19:21:29
Kathy...if you don't mind me asking, what dosage of Vimpat is your doctor prescribing? I am thinking about suggesting this to my doctor. I believe it is also called laposamide?
Thanks, Paul



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: judith k ®
03/15/2013, 20:05:48
I take a small daily dose of clonazepam (Klonopin is the brand name here). Probably that's what you're talking about.

I think it helps. But mostly I've had pretty good results with botox, and
I think that the daily clonazepam helps boost the effects of botox a little. It's especially useful to bridge things at the end of an injection cycle, when the effects are wearing off.

I have for about 6 years been 'stretching' (to 4-4 1/2 months) between rounds of injections. Sometimes I start having an irritating amount of blinking and other annoyances in the last few weeks. I'm going to start doing the botox more often.

What does your doctor think? Is there anything against your trying one medication or another for awhile?

Judith K
PS Are you doing all the other things for dry eyes? Gel and a mask at night? Warm compresses? Flaxseed oil? Those types of things, or variations on them?



Modified by judith k at Fri, Mar 15, 2013, 20:10:23

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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- judith k Top of thread Archive
Posted by: pgh2869 ®
03/16/2013, 05:13:59
Hi Judith
Thanks for your reply.
I haven't yet approached my doctor for medication, but will do so in very near future.
Yes, I am using ointment at night and using hot compresses, although attempts to tape up my eyes at night failed...may need to try again! Have considered a mask but not yet tried one...do you think it would help?
Am taking a large dose of Omega 3 oils, similar to flaxseed oil in effect apparently, but only just started, so will wait to see what results, if any, I get.
***There seems to be conflicting medical opinion as to the interval period between injections. Some consultants say that it should be no less than 10 weeks, others that 8 weeks is o.k. Apparently there is a risk of building a resistance/slight immunity to more frequent injections. I think that the botox I take is preventing the eyes from closing fully, which in turn causes the dry eye.
Thank you again for your reply...I wish you well with your particular circumstances!
Kind Regards,
Paul



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: judith k ®
03/16/2013, 09:53:21
Hi Paul,

I think a mask is one of a number of ways people try
to keep the eyes protected from air (and therefore protected from drying out)
at night. Wearing a mask after putting heavy drops or an ointment
in the eyes will also help keep that lubricant in your eyes at night.

You are absolutely right that the botox—when it's working—keeps
the eyes from closing fully. That means it's doing what it's supposed
to do: weakening the muscles.
Unfortunately, the treatment creates a situation which itself
puts you at risk for dry eye, so that's yet another reason to be vigilant.

(I'm taking what you said about the failure of taping your
eyes to mean it was a logistical problem, not that you taped
successfully and it didn't help. Is that right?)

Yes, doctors have conflicting views about how long a time should
pass between injections. There's a whole range of practice, from
rigidly adhering to "you must wait at least" (whatever number)
"months," to doctors who don't have much of an objection to
giving the toxin more in response to the patient's needs (that is, if the doctor
doesn't mind writing letters of medical necessity to insurance companies, if
those are required).

Some doctors talk about immunity; much of what I read seems to
say that the amount of botox that most blepharospasm patients take (100 units and less) isn't really anything to worry about. (That may have been a concern
with an earlier incarnation of the toxin. I think this was addressed again in a recent
BEBRF newsletter.)
Those who take a lot more botox, because of Meige, for example, may have to be more careful.

Good luck!

Judith K




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: kathy in australia ®
03/15/2013, 21:29:28
It is lacosamide, I take 100mg twice a day. So far no side effects other than extreme weariness for the first week or so.



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- kathy in australia Top of thread Archive
Posted by: pgh2869 ®
03/16/2013, 05:17:12
Thanks for this information re the dose, Kathy, and I see from reading your initial reply that you are doing well on it...certainly seems worth a try for me!
Kind Regards,
Paul



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: In Indiana ®
03/16/2013, 07:42:51
Paul-

For the dry eyes, I really like Biotears. I've tried other supplements, but find these work really well for me. Biotears have other ingredients besides just Omega 3's that help with inflammation and promote tear production. It may be worth asking your provider about. The company will let you trial it for 60 days with a money-back guarantee if you don't like it. I've taken them for about 5 years. From the link below, you can click on "science" to find out more about this product.

http://www.biosyntrx.com/products/biotears.php

I've also tried Vimpat for around 3 months, but it didn't seem to make much difference for me as far as needing Botox. I do well with Botox, though. However, my son takes it (100 mg every am, which is only half of the usual dose), and he's done extremely well with it. Since he started it a year ago, he hasn't needed Botox since. Prior to that, he was getting Botox around every 6-7 weeks. The manufacturer does offer free/reduced pricing to trial this medication. There are quite a few warnings/precautions with taking this medication, which are listed on the following page.

www.vimpat.com/vimpat-advantage-registration.aspx

I do hope that you find something that helps you more. Best wishes-




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- In Indiana Top of thread Archive
Posted by: Jann ®
03/16/2013, 16:31:30
Hi, I.I. - I read your post and just ordered Biotears. I wasn't familiar with this product and have been using Thera Tears supplements. I'm going to give Biotears a shot. Thanks!

In answer to the question regarding meds, I have had my best results with a combination of low doses of Sudafed, Klonopin, and prednisone. On a particularly bad day, I might add a low dose of Benedryl too. Botox has not been great for me and whatever benefit I get wears off quickly. I also can't take prednisone on an ongoing basis, so I do limit it to when I'm really desperate.

My problem is really bad spasms in my right eye - and I do mean bad. I do not have the blinking. So this is what more or less works for me.

I tried Vimpat and didn't feel well on it. It didn't help my spasms at all.

All the best, Jann




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Jann Top of thread Archive
Posted by: judith k ®
03/16/2013, 18:36:08
Hi Jann,

So it's definitely blepharospasm, not hemifacial spasm?


Judith K




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- judith k Top of thread Archive
Posted by: Jann ®
03/16/2013, 19:25:47
Judith - That's a very good question. I have had doctors tell me I have hemi-facial spasm, despite my appearance not being really typical of people with this problem. Other doctors tell me it's BEB, but also not typical in that it is so concentrated in the right eye.

So it's a bit of a mystery. Truthfully, if I could be sure it was hemi-facial spasm, I would sign myself up for surgery tomorrow in the hopes that I could stop this.

Thanks very much for your thought,
Jann




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Jann Top of thread Archive
Posted by: judith k ®
03/16/2013, 22:49:55
Jann,

Have you been to a neurologist who is a movement disorder specialist?

I'm a little confused. You've said "in my right eye" (as if that's where the problem
is) and also said "concentrated in the right eye" (in which case, how much would you say the left eye is affected as well. 10%? 20%?)

From what you say, since I can't really picture it, it sounds as if your appearance
may not be typical of either blepharospasm or hemifacial spasm.
But there may be substantial variations in presentation anyway.

In what way do doctors think your appearance is not really typical of
hemifacial spasm? And in what way do those same doctors think your appearance IS "typical" of blepharospasm?

I thought that sometimes blepharospasm can start out being unilateral, but that
it fairly quickly becomes bilateral. Whereas hemifacial spasm is always unilateral.

If you appear to have slight blepharospasm in the left eye, I suppose what has
to be figured out, among other things, is whether that effect is true blepharospasm
or whether it can be caused sympathetically by the other eye, which has severe spasming.

Which kinds of doctors have told you what?

Judith K



Modified by judith k at Sat, Mar 16, 2013, 22:51:23

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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Jann Top of thread Archive
Posted by: pgh2869 ®
03/16/2013, 20:49:16
Hi Jan,
Thanks for your comments, and sorry to hear that your right eye is particularly bad.
Your comments re medication were interesting...some people seem to do well on Vimpat, others don't. Will liaise with my doctor and seek her advice, but would give anything a go.
Kind Regars,
Paul



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- In Indiana Top of thread Archive
Posted by: pgh2869 ®
03/16/2013, 20:44:55
Dear 'In Indiana'...Many thanks, I'll look into Biotears. Also grateful for the information re lacosamide/Vimpat...glad that your son is benefitting from it.
Thanks again for taking the time to write your comments.
Paul



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Re: Which medications can help blepharospasm?
Re: #90656 -- pgh2869 Top of thread Archive
Posted by: judith k ®
03/17/2013, 11:03:16
Hi Paul,

I use only preservative-free products. My favorites are Bion Tears (first choice) and Theratears.

They are more expensive than drops with preservative, but I reuse these "single-use containers" at least once. The companies want to you toss the little vial after one use, and they periodically change the shape of the top so it's harder to close up again. But it's doable, and I do it.
I suppose it's a matter of taste, but I never feel like putting more than about 2 or 3 drops in each eye at most, and there's always a lot left over. Which is why I didn't like throwing it away.

I'm careful with how I keep an opened vial, and don't see why I shouldn't
reuse it later in the day. At home, keeping it in the fridge is one option. (Though
I usually don't bother.)

It doesn't pay for any company to do a 'study' which shows that,
carefully handled, the preservative-free drops last just fine. They're protecting themselves, and also increasing sales.

This is an individual thing—I understand anyone made uncomfortable by
the thought.

Judith K




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- judith k Top of thread Archive
Posted by: Donnar ®
03/17/2013, 12:53:00
Hi Edith,

I agree with you about the Bion Tears. I use it and then I put the top back on and when I need it again I use it. I throw it away at the end of the day. I originally bought another non-preservative tears drop...I cannot recall the name of it right now....but it came in the same type of little vial that the Bion comes in and the directions for those was to use it as many times a day as needed during a one day period...then throw it away. I do try to keep mine in the fridge because I like the drops cold. I cannot see why (except for the company to make more money) that the drops cannot be used for the day they are opened.

Donna R.




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Donnar Top of thread Archive
Posted by: judith k ®
03/17/2013, 14:09:14
Hi Donna,

I recall that, as you say, at one time the insert did say you could put
the top back on the single-use vials. This was true of several brands.

I also like the drops cold—the technician of one of my ophthalmologists
first put me on to this, because she herself likes cold eyedrops.

Judith K




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- judith k Top of thread Archive
Posted by: Susi ®
03/17/2013, 17:11:07
My eye doctor told me I could re-use the same vial with Restasis one time but not more than that. So I only use it twice in each eye. However, I use ReFresh Plus through out the day and use the vials until they are gone. So far no infections or anything. I hate to waste them, eye drops are so expensive. Refresh Plus has no preservatives and do not blur my vision. I use Refresh Celluvisc, a gel drop, and use them until they are gone, too, though twice usually uses up a vial since I put them in both eyes. But I would not tell somebody they should do that because there's always that chance of infection.
Susi



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Susi Top of thread Archive
Posted by: judith k ®
03/17/2013, 17:23:43
It's pretty much the same routine with me.

When I tried Restasis some years ago, I thought it was part of the instructions that
you could use one vial twice in a day.

Anyway—the manufacturers of these things want us to throw away what WE don't want to waste!


Judith K




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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- judith k Top of thread Archive
Posted by: pgh2869 ®
03/18/2013, 07:26:19
Donnar, Judith K and Susi,
Many thanks for your replies/comments re eye drops, all of which I have noted and will try different ones until I find one that gives better relief!
Recently in the U.K. we have had bitingly cold winds and I have found that only oily ointment such as Vitapos or Lacrilube have any lasting effect.
It's interesting to note that some eye drops, although they give relief temporarily, are so watery that they seem to flush out the natural oils and lipids that the eye surface requires. They are probably fine for people with normal eyes whose eyes just get a bit tired or dry occasionally, but for people like me with severe dry eye problems, the ointment is better.
Nonetheless, I intend trying some of the drops you mentioned, particularly BioTears, which seems to have a lot of additional ingredients that could help the eyes.
Thanks again...and all the best for your own particular eye difficulties.
Paul
(Plymouth, England)



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- Susi Top of thread Archive
Posted by: Bluebird ®
03/18/2013, 17:46:05
Doc told me I could use the single vial eye drops for 24 hours, but to be sure and discard after that. I usually open Celluvisc as I go to bed and use until gone the next day. I open another if I need, but I use Refresh Plus (vial ) more during the day .

Oh yes. I can get more than 2 uses if I shake Celluvisc very hard. It is so thick it stays on the sides.




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Re: Which medications can help blepharospasm?
Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: Liz in uk ®
03/17/2013, 09:34:57
Hi Paul. I'm in the UK too. Sorry to hear you're not having much success with injections. I've not tried oral meds, But I know some people find them helpful. Others, however, don't like the side effects and come off them.

Re the dry eyes. I have very dry eyes following limited myectomy, and had resorted to using lacrilube during the day as well as night-time to get some relief. I'd started getting irritation from the preservatives in my normal drops, and even preservative free single dose drops weren't helping. I was beginning to despair as the lacrilube isnt ideal because of the blurred vision it causes. I was also using a sleep mask at night to try and stop them drying out as my lids don't fully close.

A friend told me about some drops called Hylo Forte. They're preservative free and available on prescription. They're expensive, but I had no trouble getting them from my GP as she knew I'd tried lots of different brands. A bottle will remain sterile for up to 6 months, but as it only lasts me about 3 weeks that's irrelevant! I'm having to use them every couple of hours or so but they are so good! They are a gel type and very soothing. I too take high doses of omega 3.

I also bought some Tranquileye goggles for chronic dry eyes. Although manufactured in the US they're available over here. I got them from Wholesale Eyecare. You put moistened foam pads in them, so your eyes are not only protected during sleep but have the added moisture too. With the combination of the goggles at night and lacrilube, and the Hylo Forte during the day my eyes have been so much better.

I do hope you find something to help. Severely dry eyes make the spasms worse in my experience, are so uncomfortable, and certainly make life more difficult!

Liz in UK




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Re: Which medications can help blepharospasm?
Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: blinkalot ®
03/17/2013, 10:18:46
I am currently on LORAZPAM .5MG AND OLANZAPINE 2.5 MG i ALSO HAVE THE BOTOX AND HAVE HAD SOME GOOD RESULTS I AM ABLE TO WATCH TV PRETTY WELL AND I AM BACK DRIVING i HAVE HAD THE BEB AND MEIGE FOR THREE YEARS HOPE THIS HELPS BILL



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Re: Which medications can help blepharospasm?
Re: Re: Which medications can help blepharospasm? -- blinkalot Top of thread Archive
Posted by: Jay-Bird ®
03/27/2013, 08:54:03
I get Botox every 4 months & take 10 mg. of valium 3 x a day. Its not perfect by a long shot but it works for me. I don't want any weird side effects from some of these strange meds. I've seen them & no thanks! =---> Jay



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Re: Which medications can help blepharospasm?
Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: barbinthewoods ®
03/27/2013, 14:01:57
My eyes have stopped responding to botox also. What happens is my eyelids droop and by the time they open back up the spasming and excessive blinking is back. I have just started experimenting with a small dose (.50) of Klonopin at night. It helps a smidge. Anything more than that leaves me really tired and foggy.

My eyes are also very dry and I find that aggressively working on the dryness helps a lot with the blinking. Since you are in the UK you might want to try Rohto Dry Eye Relief - preservative free with hyaluronic acid and tamarind seed. Sadly we can't get it in the states. You can reuse the vial. Recently I was given contact lenses and that seems to help in windy situations a bit. Goggles would do even more. I try to stay really hydrated. That means I know where every bathroom is in every shopping center and store. Also a good humidifier in the bedroom makes a difference for me. I found a really cool looking one through Amazon. If anyone wants more info on that let me know.


Hope some of this helps someone.




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Re: Which medications can help blepharospasm?
Re: Which medications can help blepharospasm? -- pgh2869 Top of thread Archive
Posted by: MTRose ®
04/21/2013, 18:26:02
Depakote has helped me



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