Blepharospasm Bulletin Board

Newcomer - California
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Posted by: shopnsharil ®
06/05/2013, 19:41:20
Hi, I was diagnosed with blepharospasms last year. This is my first time on this site and hoping to get some much needed information on treatment options. i have been getting botox treatments but they aren't providing much relief, or maybe my expectations are too high. As an example, I received injections 4 weeks ago and am already experiencing spasms. I live close to Orange County/Los Angeles in California and was wondering if anyone knew any good doctors to see in this area. Just hoping to read something that will give me some hope. Many thanks.



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Re: Newcomer - California
Re: Newcomer - California -- shopnsharil Top of thread Archive
Posted by: judith k ®
06/06/2013, 09:13:09
Hi

Sorry to hear that you haven't been getting relief, but
Hang In There! Many, many people who had a rough time at the start are
now doing extremely well.

Among the major possible reasons why you aren't getting as much relief as you'd like:
insufficient dosage of Botox
injection sites may need to be altered
technique of injector
misdiagnosis or inadequate diagnosis (is the doctor sure you have only blepharospasm and not, for example, apraxia of the eyelid as well?)

Please let us know:
Have you been seeing the same doctor all along, and what kind of doctor is he/she
(ophthalmologist, neurologist, movement disorder specialist, etc.)?
Have you kept a record of injection sites and dosages?
What is the total amount of Botox you receive?

If you don't know the answer about dosages, you can phone your doctor's office
and ask for that information over the phone (if they are reluctant to send you a chart showing dosages/sites).

If you have been getting your treatments from the same doctor, have you asked
why the treatments aren't giving you more relief than they do?
Does your doctor have any particular rules he/she likes to follow—such as
not wanting to inject above a certain dosage; or sticking with the same dosage for a certain amount of time; or being reluctant to change injection sites?

You are obviously thinking of getting a second opinion. Good! Sounds like you should do that.
I'm sure people on this board will make suggestions. You can also contact your regional BEBRF (Benign Essential Blepharospasm Research Foundation) office and ask for names (these are not recommendations, but names of doctors who treat blepharospasm; you could then look some of them up on the internet).

It might also be very helpful to use the Internet to research blepharospasm specialists who have a lot of experience in diagnosing and treating many blepharospasm patients, perhaps, though not necessarily, at a teaching hospital or research institute.
Even if that doctor isn't as much "in this area" as you'd like, it still might be worth it to make that longer trip at least once.

You could ask for an appointment (there may or may not be a wait at a teaching hospital or institute) and meanwhile continue your search.

And let us know what your current doctor says about what plans for your treatment he/she has..

Because of doctors having different approaches, and experimenting with dosages and sites, and all of that—it often it takes a while to get good results.
So, without question, there is hope!

What you are going through is frustrating, but not unusual.

Good luck!
Judith K



Modified by judith k at Thu, Jun 06, 2013, 09:20:25

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Re: Newcomer - California
Re: Re: Newcomer - California -- judith k Top of thread Archive
Posted by: shopnsharil ®
06/06/2013, 13:19:18
Hi Judith, Thank you so much for the response. I have only seen one doctor for treatment. He is an opthalmologist. I have been getting about 30 units total for injections...my eyes seem to be very sensitive to the botox in my eyelid and the dry eye side effect was so severe that he only likes to use about 5 units per eyelid. The rest is injected in forhead between brows and a few units on the outer area of my eyes. From reading other posts, I can tell I am definitely on the lower side of dosages. My appointments have been scheduled for every 10 weeks but really I only get relief for about 4-5 weeks and just suffer through the rest. My doctor is definitely conservative and personally i just thought having the injections more than 10-12 weeks apart would be bad for me.

It helps to read all the posts and know I'm not alone here. Although I have never known a single person personally to have this. I also was wondering if diet plays a part in any of this. I have read several posts about eating healthy as well as beginning to use mindfulness and meditation to help.

Thanks again for your encouraging words,
Sharil




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Re: Newcomer - California
Re: Newcomer - California -- shopnsharil Top of thread Archive
Posted by: diane48 ®
06/06/2013, 12:52:29
You can contact a California support group rep, or coordinator, or director.

They have word-of-mouth, real-time feedback about docs, from their support group members.

CALIFORNIA

Joanne Matuzas
State Coordinator
3719 Via Del Conquistador
San Diego, CA 92117
Tel: 858-273-0444
E-mail: jmatuzas@san.rr.com

Marlene Ehresman
Co-Representative, Sacramento Area
2550 S. River Road
West Sacramento, CA 95691
Tel: (916) 372-7926
E-mail: lauden1@cwnet.com

Elizabeth Dahl
Co-Representative, Sacramento Area
96 Petrilli Circle
Sacramento, CA 95822
Tel: (916) 421-5804
E-mail: LIZDAHL9628@aol.com

Sherwin Low
Co-Representative, East San Francisco Bay Area
2655 Appaloosa Trail
Pinole, CA 94564
Tel:510-758-9211
E-mail: sclow10@comcast.net

Connie Keatinge
Co-Representative, East San Francisco Bay Area
3259 Sweet Dr., Lafayette, CA 94549
Tel: 925-283-2069
E-mail: ckea1@comcast.net

Lynn Yarbrough
Area Representative
37270 Wyndham Rd.
Palm Desert, CA 92211
Tel: 760-360-4006
E-mail: lyarbrough@dc.rr.com

Mark Sheeler
Area Representative - West San Fernando Valley
22332 Dolorosa St.
Woodland Hills, CA 91367
Tel: 818-348-6127
E-mail: smarkam@att.net

Kathy Berg
Area Representative
5145 Harvest Estates
San Jose, CA 95135
Tel: 408-270-9787
E-mail: kberg@pacbell.net

Sanford Miller
Co-Representative, Long Beach
2701 East La Palma Ave. #1
Anaheim, CA 92806
Tel: (714) 600-9911
E-mail: sanford.miller@sbcglobal.net

Janice Dominguez
Co-Representative, Long Beach
1805 N. College Circle
Long Beach, CA 90815
Tel: (562) 596-8221
E-mail: bmd4j@charter.net

Renee Capen
Area Representative
983 Goldenrod Ln
San Luis Obispo, California 94301
Tel: (805) 441-7589
E-mail: reneecapen@yahoo.com

Peter Bakalor
Western District Director
2105 NW 201st St
Shoreline, WA 98177
Tel: (206) 219-9053
E-mail: dir-w@blepharospasm.org




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Re: Newcomer - California
Re: Re: Newcomer - California -- diane48 Top of thread Archive
Posted by: shopnsharil ®
06/06/2013, 13:21:43
Thank you for the response. I will contact a few of the offices for some names.

Best,
Sharil




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Re: Newcomer - California
Re: Re: Newcomer - California -- shopnsharil Top of thread Archive
Posted by: judith k ®
06/06/2013, 18:10:41
Hi Sharil,

Can't be sure, of course, as we're all different. But 30 units is
considered low. Maybe the injection sites need to be adjusted.

The 'dry eye side effect' is largely because the botox
weakens the muscles around the eye. That what it's supposed to do:
to weaken or paralyze certain muscles in order to stop blinking and spasms.

However, as a result of weakened muscles, your eyes don't close as tightly as they did before. Even if you voluntarily try to squeeze your eyes really tight, and it feels as if they are just as much closed as before blepharospasm—they're not.

When you are awake, you can lubricate your eyes by using lubricating eyedrops
when your eyes bother you (and even when they don't, it's a good idea—your eyes can be 'dry' without bothering you with a feeling of dryness).

At night, you can't apply the eyedrops. Since your eyes aren't completely shut, the surface of the eye is partly exposed and your eyes can dry out (the tear film is disturbed). You aren't awake to do anything about it.

So one thing to do is to anticipate the dry eye problem and try to do what you can to minimize the vulnerability of your eyes.

Are you doing any or all of these things?:

When you go to sleep, use some kind of thick gel or ointment that will help your eyes from drying out.

Wear a mask. There are all kinds. Some people have posted about a kind of goggle that can moisturize the eyes. I use a plain cloth sleep mask. There are all kinds of masks.

Avoid dry air, especially blowing dry air. Don't sleep directly under a fan,
or allow a fan to blow in your eyes.

If you use a space heater, don't let warm air blow into your eyes.

If humidity is very low, use a humidifier.

Use warm compresses over the eyes a couple of times a day. (This feels very nice!)

Omega 3 oil especially. I take flaxseed oil, some people grind flaxseed and
mix it with something like yogurt or cereal.
There are a number of sources of Omega 3s.

(Maybe you're already doing all this!)


Judith K



Modified by judith k at Thu, Jun 06, 2013, 18:14:42

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Re: Newcomer - California
Re: Re: Newcomer - California -- judith k Top of thread Archive
Posted by: sue in orlando ®
06/18/2013, 12:09:06
wow Judith, thanks for all that info. I wish you would have been in the doctors office when he gave me my first botox injection to tell me all these things.

My doctor just gave me the injections and said, "see ya in 3 months...next...."

Thanks for posting this.

sue




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Re: Newcomer - California
Re: Newcomer - California -- shopnsharil Top of thread Archive
Posted by: sue in orlando ®
06/18/2013, 12:27:53
Hi Sharil,

I have only had two sets of botox, I was diagnosed this past Jan.

The first does worked great for me. I was just happy to be able to drive and go for a run and listen to a person without spasms.

I just had my 2nd dose. The doctor told me it was dangerous to get another dose under 3 months.

this time, It didnt work as well until the 2nd month. My eyes are much more dry which triggers spasms with me. However, it is better than without botox. I am not sure how much he is giving me, but I was told I am receiving the lowest dosage you can give. I would rather manage with low dose than have my eyes not shut and get drier eyes. I am still working on whats best for me too.

From what I read here, everyone is different on all levels of doses, but it helps relieve the spasms either way and that is what matters.

Good Luck, you will be fine.




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