Posted by kathy ® , Nov 29,2001,02:58 | Archive |
--modified by kathy at Thu, Nov 29, 2001, 02:59:16
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Re: injections and my questions answered
Hi, Kathy,
Re : injections and my questions answered --- kathy Posted by Lynn Yarbrough ® , Nov 29,2001,18:56 Top of Thread Archive My Doctors and I have settled on a pattern of 5 injection points around each eye: 5 mu in each of three sites above the eyebrow, and 2.5 mu in two sites in the upper lid, one near the nose and one near the outer corner, for a total or 20 mu per eye. Nothing below the midline of the eye. Apart from the beneficial effects of these injections is one disagreeable side effect: I can't focus both eyes on anything beyond about 30 degrees from the center of my field of vision (strabismus). In the center third of the field, all is well; beyond that I have double vision.
I am certain that this injection and dosage pattern is NOT useful for every BEB patient. I know that many get injections in the lower part of the eye, and much stronger doses at various points, and substantially more frequently. When I started (in 1990) I was getting three injections in the upper cheek just below the lids, and a third one in the middle of the upper lid (that was the first to go). I don't recall what dose size the Dr. used then.
Right now I'm at 5 months into my 7-month cycle, and beginning to twitch and squeeze the muscles near my eyes, although not yet any spastic blinking. So I know I am two months away from the end of my cycle by how it feels as much as by the calendar. In a few weeks I will begin to spasm occasionally, and it will get worse rapidly. At 10-12 spasms a day I begin to plan my next series of shots. Since both the Dr. and I have to travel over 50 miles, the schedule is a bit uncertain and I may have to suffer a week or two of serious spasms -- perhaps 200 per day -- before things get better. Sometimes I can drive to the clinic, most times my wife drives.
I hope this is useful to you and others in the future.
--- Lynn
Re: injections and my questions answered
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thank you so much! where you get your injections is very similar to mine; so perhaps there is some hope in adhering to some of these guidelines. the side effects i have after are sometimes the same and often different so this close communication you have with your doctor is probably good if he can determine from your descriptions how well they are working. i'm not sure if my doctor could stand hearing from me that much! i will try and get this info to him and see if something good can come out of it.
Re : Re: injections and my questions answered --- Lynn Yarbrough Posted by kathy ® , Nov 30,2001,04:51 Top of Thread Archive
one thing i am noticing right now is that the light blue background on the "post reply" portion of this screen is much easier on my eyes than the stark white of what i am writing on now and our bb. i wonder who i should write to about this?? judy?
thank you again!Re: injections and my questions answered/further thoughts
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as regarding the pain i always have on the administering of the injections, i figured out that the reason the tylenol 3 did not work last time was that i took it too late. this time i took it well before my injections along with 3 thick layers of emla cream in the above the brow area AND used Mindy's deep breathing (exhale out) during this time. we used to use only ice but i commented to his assistant that i would not be having "natural childbirth" with my injections any more . the pain is way beyond that. she laughed and said it made sense.
Re : injections and my questions answered --- kathy Posted by kathy ® , Nov 30,2001,05:02 Top of Thread Archive
one thing i found to be thankful for is that i do not have to take the tylenol 3 on a regular basis as it renders me a total "space cadet" for the entire rest of the day! i can't stand that feeling. listening to you all talk about the different pain medications that were and were not working made me wonder if it perhaps has different applications.
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