go figure


Posted by r coutant , Jan 25,2002,17:17   Archive
since 1998 i've seen 3 neuro opthamologists. during
that time i've experimented with drugs and low
dosages of botox to no avail. this summer i was
referred to another dr. and had a perfect 2 1/2 months,
then ptosis and it didn't last as long. this injection
december 4th seemed to work from the 7th day to around the
14th. then i couldn't drive and could barely work from
around dec 18 until now january 20th. since january 20
i'm not having trouble driving and work is fine.

how is it possible for the botox to work/not work-preventing
driving/ back to working. this doesnt't seem possible
to me. my last 3 injections have all been at 100 units.
if someone challenges me that it is all mental i'd
challenge them back. my spasming since 1998 has occurred
many periods when i didn't have a care in the world.
i don't understand why it has become effective 6 weeks out.

go figure


rhonda coutant in dallas




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Re: go figure

Re : go figure --- r coutant
Posted by Bob Campbell , Jan 27,2002,20:07 Top of Thread Archive
One thing you have to remember about blepharospasm is that it often varies over time - from hour to hour throughout the day, from day to day throughout the week, from week to week throughout the month and from month to month throughout the year. Some of the variations can be linked to known exacerbators - stress, overtiredness, dry eye - but others seem to occur for no obvious reason. This is one of the things which makes it difficult to optimize the Botox regime (number of sites, location of sites, dose per site) for a particular patient. It is a moving target. Some doctors like to try a particular modification at least two times before trying another. In theory, Botox gives maximum benefit at 7-10 days and then gradually decreases over about three months. That works for the theoretical patient. Obviously, I am not as I don't get maximum benefit until into the second month and then I get marked ups and downs.



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Re: go figure

Re : Re: go figure --- Bob Campbell
Posted by kathy , Jan 28,2002,07:44 Top of Thread Archive
this is a great explanation for the peculiarities and irrregularness of this disorder and is the reason why everyone gets so frustrated; because there is no consistency. in fact i think that is even more of what we are all trying to strive for, consistency in our effective injection period so we can at least plan things sometmes.



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Re: go figure

Re : go figure --- r coutant
Posted by Lynn Yarbrough , Jan 27,2002,20:27 Top of Thread Archive
Rhonda,

It sounds as though there may be some other stressors that are getting into the mix, although they may be hard to identify. But every time I have had something like that going on I have been able to link it to some stress. Sorry I can't be more specific, but we are all different. Good luck!

--- Lynn




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Re: go figure

Re : go figure --- r coutant
Posted by Delaine Inman , Jan 27,2002,22:14 Top of Thread Archive
What Bob describes is the way it is for most of us. Stress definitely plays a role, but sometimes there is no rhyme or reason. It use to drive me nuts that it was so unpredictable no matter what I did. Oh I know the klonopin helps, but somedays more than others because the symptoms wax and wan so I've learned I just have to go with the flow, try to focus on being healthy, get plenty of rest, rest in the afternoon, manage stress as best I can. What you describe is why I'm never sure if the Botox helps at all. I have days that are good in the first month and days that are terrible and the same can be said for 3 or 4 months. I haven't had Botox since Oct. 4 and I really can't say things are much worse on my worst days, and it's almost Feb., than they were Nov. 4. I had some really good days in Nov and Dec and Jan and I've had some really terrible days as well every month. Just enjoy the good days and be thankful for every single one of them.



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Re: go figure

Re : go figure --- r coutant
Posted by Kelly Saffell , Jan 28,2002,09:14 Top of Thread Archive
Rhonda,
I had planned to call you back later today - my daughter got sick and then I left for New Orleans for a funeral and just got back. Did you see Dr. Merritt or did you postpone since you had improved? I so appreciated your message. It gave me the boost I needed!

Kelly




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Re: go figure

Re : Re: go figure --- Kelly Saffell
Posted by R COUTANT , Jan 28,2002,09:25 Top of Thread Archive
KELLY,

I DID SEE DR. MERRITT. HE'S GOING TO HAVE ME ON
A 2 MONTH INJECTION PATTERN.

I LIKE HIS BEDSIDE MANNET A LOT BETTER THAN MY
PREVIOUS DOCTOR.

THANKS,
RHONDA COUTANT




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Re: go figure

Re : go figure --- r coutant
Posted by R COUTANT , Jan 28,2002,11:21 Top of Thread Archive
I REALLY APPRECIATE YOU FOLKS WHO RESPONDED TO THIS
POST. FOR ME THIS ILLNESS IS SO IRRITATING BECAUSE
I CAN'T MAKE PLANS WITH CERTAINTY ANYMORE. TO KNOW
I'M NOT THE ONLY ONE IS COMFORTING.

AS I'VE SAID I'M A CPA AND I'M AT AT WORK HAVING
A GOOD DAY, THANK GOD. A WEEK OR TWO AGO I WAS
READY TO THROW IN THE TOWEL.

IF STRESS IS A CULPRIT I CAN'T TELL MY STRESSES
NOW FROM THE ONES A WEEK OR TWO AGO. IT'S
WACKY.

RHONDA COUTANT IN DALLAS




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Re: go figure

Re : go figure --- r coutant
Posted by Shirley-Arkansas-USA , Jan 28,2002,12:10 Top of Thread Archive
Go figure is right. You've had so many good responses to this that I really don't have anything else to add. Just know that you are not alone with this.
If we only knew what really caused the ups and downs with this. It would be so nice if we knew what actually let us enjoy "a better eye day". We could bottle it and make our millions.

My botox usually takes up to 3 weeks to be the most effective. I notice it very gradually. I used to notice that my ptosis wouldn't get any worse after 3 weeks. That was my cutoff point. Then things would stabilize for a time before the squeezing would start coming back full force.

Your symptoms probably aren't a matter of your botox working or not working but whether your symptoms were just better or worse during those time frames. The botox is probably working but at times it really doesn't seem to make a whole lot of difference.

Hang in there. We don't have all the answers but we're right there with you.

Shirley in Arkansas




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