Web Archive

Already done - not by Bill of course <g
I can't vouch for the program as I've never used it but here's one
http://www.robertinventor.com/Activity_Timer/ "Eye protection reminders to
take one or two minute eye breaks several times an hour as recommended by
eye doctors. You can play a short tune for the break, or flash the icon or
screen as a reminder. It's a reminder to blink to moisten the eyes, and to
relax the eyes by looking into the distance, e.g. out of a window."
The scary thing is that it keeps track of how much time you spend on the
computer! But it's only $16
There's another one focused on exercise reminders:
http://www.workpace.com/PRODUCTS_WP3MOST_EN. It costs $49 US
Cute Reminder http://www.cutereminder.com/help/healthcare.php sells for
$29.95 but has a free trial version.
Sherry

I am on Medicaid so I have to go to a teaching hospital. The upside
is that they always have the newest tests and treatments. The
downside is a long wait for an appointment.
My appointment isn't till March 14th and the stress of waiting for a
definite diagnose is awful. I was told I was glaucoma suspect but
nothing more could be narrowed down till the 14th.
I'm not sure what to do. I've cut down my Durahist to every other day
(just in case) which is torture allergies wise. I cut out my Allegra
D. I only use my steroid cream on my inverse psioris when the
itching gets till I can't take it. I'm scared anything I could take
may do something to my vision.
I also just caught a chest cold and I'm unsure what I should take
for the cough/fever/aches. Normally I take Dayquil and Nitequil but
now I'm not sure.
To top it all off because of the stress right now my shingles seem
to be starting to flair up. Not to mention my MVPS flaring up.
I'm a mess. Sorry about the venting , while my husband tries to
understand he can't fully understand.
Maggie

Thanks, Joan. Neither of the glaucoma doctors I've seen were willing
to order an MRI.
I guess you are right, that if I want to have it done I will have to
go to my primary care physician and ask her. I'm not sure she will
do it either.
I really can't cut down on computer usage because it's my job. I do
try to rest my eyes frequently. Both my glaucoma specialists said
they didn't believe that study in Japan that linked computer usage
to increased risk of glaucoma because so many people now use
computers all day there would be an epidemic of glaucoma and there
isn't. Or so they said. I guess it could have caused my glaucoma
although obviously there is a genetic component, or maybe made it
start at a younger age but unless I quit my job I'm not sure what I
can do about it.
Thank you for your prayers.
-Deah

Hi Deah-I too have uneven damage in my eyes. My right eye is the bad
one with damage in the form of an arcuate scotoma. The left eye has
remained stable with no apparent damage in vision and when looking at
the optic nerve. I take drops in both eyes. Recently I was a little
bummed because despite getting my pressures down to 14-16 in both
eyes with Xalatan, there was some new damage in my right (bad) eye.
So on March 22nd I am having the laser precedure in the right eye to
see if we can lower it some more. Putting me on a second drop of
Timolol did not do the trick so I am I for a laser. But it's
definitely disappointing to be doing everyting possible to preserve
sight and still have damage. Good luck.
Chris in NH

Deah, someone mentioned it could be something besides your eyes causing
this. I think you need a CAT scan done of your brain, or whatever tests they
could do, to rule out something else. It wouldn't hurt and might help. I
recently had one done, with dye because my mother died from a brain
hemmorage. It's relatively no big deal. Also, I'm concerned about you using
a computer all day. Wasn't there something in the news lately about glaucoma
and computer use making it worse? It's also something to check out. Please
try to stay calm because stress is a huge factor in eye problems. I know
that sounds easy for me to say, but I also have had my trauma with this
disease. One of my trabs failed last year, so I know whereof I speak. Why
not ask your family doctor about tests? I'm praying for all of you. Love,
Joan W

Hi Monica,

Hey all,
Does it seem like the list has been a little extra busy this month?
Well...... There have been 455 messages posted this month so far and the
short month of February isn't even over! Previously the high was 344 in the
entire month of May 2004.
It's keeping me busy moderating, but hey, this is so great that you all have
so much to share! Thanks for being part of the group!
We currently have a membership of 551. The other day it was up to 555, but
the membership list number is always changing, but has been constantly on
the upward move.
Phew!
Sherry
List owner, moderator

At the Wills Glaucoma site, there's an article on laser surgery. It says:
"We have found laser surgery in appropriate patients to lower intraocular
pressure an average of 25 to 35%, with the greatest lowering of pressure
being approximately 4-6 weeks after laser surgery. Patients who respond the
best are over 60 years of age, have a brown color in their drain that allows
the light of the laser to be absorbed, and have as their diagnosis either
primary open angle glaucoma, normal-tension glaucoma, pseudoexfoliative
glaucoma, or pigmentary glaucoma."
http://www.willsglaucoma.org/laser.htm
So it sounds like the results were in the range to be expected. Did not the
glauc doc explain before laser was done what the expected target was of the
procedure? Most people who have laser must still continue to use drops
afterwards. The article above goes on to say "It should be thought of as
adding another strong medication to the medications the patient is already
taking. Occasionally, one or more of the drops that the patient has been
taking can be stopped after a trabeculoplasty, but this is not usual."
There was a chat about laser surgery, which you can read at
http://www.willsglaucoma.org/supportgroup/20021002.php
Sherry

Deah:
You asked a little while back whether it is common for glaucoma
damage to be worse in one eye than the other.
This is true for me. My right eye is a lot worse than the left.
The pressure in both, before treatment, was the same.
The "bad" eye however is not my dominant eye, so using both eyes, my
vision is apparently normal.
The bad side of of one sided damage like this is that I didnt'
notice it until May 2003 when I happened to get tested on the eye
chart at a routine physical: six months earlier a visit to my
optometrist was normal: so this change happened in six months,
although for at least 5 or 6 years previously I had noticed that my
right eye seemed to get used to the dark slower than my left: but I
assumed it was sinus related because on that side a CAT scan
showed "total opacity of my right maxillary sinus" (CAT scan taken
for another reason, after an auto accident where I hit my head)
before this was unblocked by a septoplasty and endoscopic surgery in
2000, after which the "getting used to the dark" seemed to be less
of a problem.
Laurie

After 4 or 5 years of being "watched" for glaucoma, I had SLT done
about 4 months ago. Today was my first visit back to check the
pressures. Prior to the treatment, the pressures were between 22-
26. Today, they were 18 & 19. I had thought the SLT would reduce my pressures
more so felt disappointed leaving the office today. Have any of you had SLT and
if so, how were your pressures after it?

I'm still so new to this I'm not sure this is much help, but I think
some of the questions I should be asking, I'm afraid to. I should
probably be asking what chance there is to save the rest of the
vision in my affected eye, but I'm afraid to. I should also probably
ask what will happen next if none of the eyedrops work.
One thing I wish doctors would explain what the various tests they
give you mean. I had all sorts of tests with the first glaucoma
specialist--I think mostly looking for optic neuropathy other than
glaucoma--and although I didn't have normal findings on some of these
tests, he wouldn't explain what they meant. He just kept saying "it's
just one more piece of the puzzle."
I don't think most people--especially if you find out you have vision
loss--can absorb that much info at the time of diagnosis. It is such
a traumatic event--yesterday you thought you were normally-sighted
like most people--today you find out you are losing vision and may go
blind--that even if doctors told a patient more, I think it normally
takes several visits to start to understand what's going on.
-Deah

...
.Dear Judy,
How can I find this histomoplasis group? Is it on the Internet?
What kind of problems did you have with this condition?
Thanks for answering my other post.
Sincerely,
Monica.

Thanks, Laura.
Yes, the retina specialists handed me off to the glaucoma
specialists and they say it is glaucoma although in some ways
atypical, so it is a diagnosis of exclusion. I know glaucoma can be
tricky to diagnose. There is thinning of the optic nerve fiber layer
which I guess indicates glaucoma and the HRT showed a couple of
borderline parameters, but my understanding is that these
technologies are for following progression, not for diagnosis.
I might try another doctor, I'm not sure yet. I guess I will wait
and see if the Lumigan helps. I had the receptionist make the
appointment for two and a half weeks. I don't know how long it
actually takes to tell if a drop is working--maybe even a week would
be enough, but doctors don't want to see you that often.
I am only taking the drops in one eye so he is comparing to the
other eye, even though before treatment the pressure was usually
lower in the bad eye anyway. I asked how he could even tell since
it's usually lower anyway and he said he is looking for a big drop,
not just two or three points.
Thanks for your encouragement. It's just harding having let the
retina specialist waste all those months I could have been in
treatment now wasting more time trying to find something that will
work. If only I had been diagnosed a few months ago when the visual
loss wasn't so bad, there would have been a little more cushion, I
guess, to wait for a treatment to work.
-Deah

Have you had your retinas checked since you started seeing the flashes?
I think peripheral flashes are a side effect you should mention to
your doctor right away.

Hi Deah,
I'm so sorry! Are they sure that you have glaucoma? Can you see other retina
specialists? Are they sure that it is an eye thing? You hear about people
with concussions and things having half their vision cloud up, could it be
something not eye related? My advice would be to try new Dr's and keep
pushing them. You shouldn't have to wait for a month to see if a drop works!
Have you tried Dr Brown? I've always been able to get an appointment right
away with him and he is supposed to be excellent.
Best of luck, hang in there!!!
Laura
---- Original message ----

Laura, I've been having peripheral flashes ever since I had a
posterior vitreous detachment in Sept. Although sometimes it can
mean a retinal tear, usually it's just the vitreous tugging on the
retina. I have noticed that I've been getting more of them since
starting Xalatan but I've had them so long I don't pay much
attention anymore--in my mind, glaucoma is a lot worse. Yes, the
retina specialist told me the flashes would gradually go away over a
few months but it's been almost six months now and I still see them
occasionally.
-Deah

I know a couple of you are fearful about possible vision loss because of
your interest in the visual arts. I saw this article in today's Seattle
Times (originally from the Los Angeles Times) and was just blessed by what
can be done with limited vision! He doesn't have glaucoma, but maybe this
will give you some hope that art continues in spite of a disability!
http://tinyurl.com/5rk2d
Enjoy!
Sherry

Well, the Xalatan did not do anything for my eye pressure so now I
am on Lumigan. The doctor said that Xalatan doesn't work for ten
percent of people. I am so discouraged--two more weeks wasted while
my vision keeps getting worse. I can't get over how terrible my luck
has been throughout this ordeal--I have normal tension glaucoma and
healthy-looking optic nerves, so no one caught this until there was
significant visual field loss. Then I get a couple of retina
specialists wasting five months telling me it was a vitreo-retinal
problem and would get better, instead of referring me to a glaucoma
specialist right away to check out the vision loss. Now I am scared
that I will be one of those people for whom none of the drops or
other treatments work, and I will just keep losing vision until I am
blind in that eye. At least for now the other one is normal. The
doctor keeps wanting me to wait for three or four weeks before
coming back and I keep pushing for two--thank goodness, because I
would have otherwise wasted a whole month on drops that didn't work.
I just feel so helpless about this. I can see I am losing vision and
nothing is helping. Is it common to go through many months of trying
out different treatments before one helps? I am scared that with my
vision loss as bad as it is and at the rate it's progressing, I just
don't have that much time left to wait to find the right treatment.
-Deah

Hi everyone,
Has anyone noticed an increase in peripheral flashes since starting Alphagan
or Xalatan? I've been having a lot of them lately, especailly when entering
dark rooms. They seem to be worse about 2 hours after I put the Alphagan in.
I've had my retinas checked a few times and they have been okay. Does anyone
else see flashes around the periphery and had them be harmless? I'm really
hoping that they go away, or at least won't be a problem.
Thanks,
LAura

Hi Monica,
I too, am glaucoma suspect with 4 iridotomies and ocular
histoplasmosis. Sometimes it gets confusing. For the second time, I had
a flasher, so I ran to the histo doctor to find pressures of over 50
only to be told to go to a glaucoma specialist. I have found one doctor
to handle both, although I think I am his only histo patient. I also
joined histoplasmosis groups, it has been very helpful. Both groups have
made it easier to deal with and I have learned so much that doctors fail
to inform patients of.
Judy

.Dear Dr. Ritch:
I am a glaucoma suspect for several months with no nerve damage,but
I have other factors that qualify me.
I am over 65, nearsighted, used nasal spray (flonase) for 20 years
off and on, get migraines since age 20. I also have ocular rosacea
and dry eye.
I have a disc heme and choroidal vessel with a scar on right eye
which I read in a medical book is histoplasmosis, some kind of virus
which is healed.
My left eye has a notch. My pressures are around 16, 17, sometimes
a bit lower. No family history.
The glaucoma specialist told me at the start that I had glaucoma
later said I didn't because of no nerve damage. I have some
periphial defects where the notch is.
I take Topral XL for 8 years for my blood pressure which is
controlled.
What do you think? I had a lot of tests even the SWAT and pictures
taken. And nobody still knows. Should I go to another specialist?
Thanking you for any advise you can give me.
Sincerely,
Monica

Speaking further with the doctor, he said that as the laser would be
performed only in the far periphery, there should be no effect on my
vision.
However as the hemorrhaging seems to have stopped, he is now going
to just recheck me in 2 months: rather than do the laser now.
This is a relief, as i am simultaneously been hit by several other
issues in my life, and that would have been an "overload" situation.
Laurie

Can't tell what kind of laser retinal surgery is being performed for
precisely what diagnosis, so I can't answer. There are several different
retinal laser procedures.
ask your ophthalmologist
second opinions never hurt
R
Robert Ritch, MD
Professor of Clinical Ophthalmology
Chief, Glaucoma Service
Surgeon Director
The New York Eye and Ear Infirmary
310 East 14th Street
New York, NY 10003
Medical Director and
Chairman, Scientific Advisory Board
The Glaucoma Foundation
Private - Tel: 212-673-5140
Director of Intelligence: Karen Cheifetz
kcheifetz@...
Patient Appointments - Tel: 212-477-7540
Fax: 212-420-8743
e-mail: ritchmd@...
http://www.glaucoma.net
http://www.nyee.edu

It sounds as if people with open angle glaucoma don't need to worry as much
about medicines, as people with narrow angle glaucoma.
But how about allergic reactions in which the eyes
are exposed to things that cause redness/irritation/etc
in the eyes?
For example, if dealing with a lot of smog, or some chemicals
or paint, for example?
With open angle glaucoma, for example, do I need to be concerned if my company
brings in a cleaning service
that uses chemicals that cause eye irritation, or paints the walls? Will these
create issues regarding a temporary rise in eye pressure? Unfortunately, we are
unable to open the windows.
Laurie

Hi,
I recently had a OCT (Optical Coherence Tomography ) scan to find out
about the thickness of my nerve fiber layer. Unfortunately, the machine
could only be adjusted to -12 diopters, but I have a round -20 diopters.
So they were not quite sure whether the result is reliable at all.
Now my question: Did anybody encounter the same problem? Do you now
whether it makes the result wrong? Is it save to have the test with
wearing contact lenses (soft ones) and would that make the result more
reliable?
Thanks for any input!
Doris

You have been hit hard -- That's way to much to handle. I hope things ease
up for you soon and that you don't have cancer to deal with.
I'm amazed at how often I find my thoughts drifting to what I'm seeing now.
I'll be glad when a little time has gone by and I'm "adjusted" to having
glaucoma -- whatever that means =).
Janet

Great Mia!
One thing I really like about computers is that you can enlarge the fonts
you're using so you can read them. Even right after my trabs when I could
barely see, I was able to spend some time on the computer (but not much
because for about a week, my eyes got tired really easily)
Sherry

Just thought, since I've been relatively active here recently, that I'd tell you
all that I've managed to secure a job with a writing organization. Ironic that
this has happened after this loss of vision but still, it's wonderful news for
me and illustrates how even major loss of vision will not stop my determination
to be what I want to be career wise!
:)
Mia

Thanks Laura and Sherry for your encouraging words. I am usually a
pretty positive person but I was having a pity party today I guess!
Anyways my laser surgery is probably going to be in March sometime.
I hadn't scheduled it at my appointment yesterday so I have to call
and schedule it on Monday. I just hope it is what I need to stay
stable for a long, long time. I was just so sure that I was already
doing all the right things. I was obsessive about my drops, have
been exercising and taking really good care of myself. It was just
a punch to the gut I guess. At 51 I plan on having a long life left
in me!
Chris in NH

Laurie,
In a Wills chat on laser surgery, Dr. Rick Wilson said
"If the laser surgery is effective, the amount of intraocular pressure
lowering slowly diminishes over time. Little effect remains in most
patients after three to five years. In patients who had a fairly
long-lasting effect from their original trabeculoplasty, the procedure can
be repeated once. However, the drop in intraocular pressure the second time
will not be as great as was seen initially."
You might want to read the whole chat at
http://www.willsglaucoma.org/supportgroup/20021002.php
It doesn't mention laser for other eye conditions. I would *think* that
since the laser for retina problems would be a completely different thing
than laser to lower IOP. But then, that's just a wild guess on my part <g
From what I've heard, laser is a quick and simple process, nothing to be
concerned about.
Sherry

Is there such a thing as having eyes that are "lasered out":
where they can't do laser anymore?
I am a little concerned because until last year, the only
surgery I had ever had, was 4 wisdom teeth out as a college student,
then in 2000, a septoplasty for a deviated septum in my nose,
and last summer I had my first ever laser surgery: to fix a retinal
tear. Now my retinal specialist wants to recheck me on the retinal
neovascularization/hemorrhaging in 3 months (in May) and if it is
still there, he may order laser surgery for that: panretinal
photocoagulation. Apparently as this would be applied only to the
very far periphery, where the neovascularization is, I would not
experience any changes in vision from this. And he also confirmed
that it would not raise my pressures, or interfere later if I had to
get a trabuloplasty or trabulectomy later in life.
But more concerned over having so much laser done: and what if my
glaucoma doctor wants to do laser too, to get my pressures down?
It's not that I'm scared of laser: well, a little bit:
but once you've faced it, it's a lot less scary the next time:
it took a short time, then I was back to work the next day without
any side effects at all.
But more a concern that what if I have too much laser, too many
times? Is there a point at which they say, "we can't do any more
laser: your eyes are lasered out?"
Laurie

Hi Ron, Have you tried the preservative free moisture drops? I find them to
be a lot gentler on my eyes than the ones with preservatives. I still have a
lot of dry eye issues, but the preservative free ones help more, the single
use containers are just kind of a pain.
Laura
---- Original message ----

Chris,
Good luck with the laser - let us know how it goes. Of course, that's not
the *last* option for protecting your vision.
When there was some damage with my pressures at 17 and I'd already gone
through all the meds in the book, trabs were the only option. I wasn't a
candidate for laser.
Hang in there! Hopefully the laser will bring your pressures down to a good
level for your optic nerves!
Sherry

Sherry,
I had trab surgery in 1988. Over the years I have found my eyes
drier and more irritated at different times of the year - possibly
connected with allergies. Celluvisc and Refresh Plus sometimes help
but sometimes I find my eyes more uncomfortable after using the drops
for a few days. I have large blebs and have been told that the size
of the blebs contributes to my eye irritation. I accept the
discomfort as a small price to pay for my vision.
Ron

Although I don't post here often I do read the posts everyday. Ans
since I had a discouraging appointment at the Dr.s yesterday I wanted
to share and maybe get some insight.
First of all I am 51, female and have been on Xalatan for 3 years.
It seemed to have done a good job for me by lowering my pressures to
14-16 in both eyes. My right eye is the one with damage-I have an
arcuate scotoma-and the left eye seems in better shape with no
scotomas and an optic nerve that has appeared in good shape. But in
December at a routine appointment my field test in my right eye
showed some additional damage with an optic nerve that had also
deteriated since my previous visit. The left eye seems stable at
this point. So the Dr. put me on a second drop, Timolol. Well,
yesterday at my follow up visit there was no change in my pressures.
So at this point he has decided that I should have laser surgery on
the right eye to get the pressure down. So I am discouraged and
dishearted that even though I am so diligent in my treatment that I
may still be losing sight. "What Ifs" keep going through my mind
like what if after the laser surgery and the pressures getting lower
I still lose sight? I am only 51 and want to be able to see well
into my later years. I am just a little bummed today.
Have any of you had a similar progression? What has been other
people's course of treatment in a similar situation? Thanks for
being such good "listeners".
Chris

hi---

in the past few months, i have had episodes of very dry-feeling eyes. it is worst at night, when i wake up in the am it is so severe i practically have to pry my eyes open because my lids scrape across my corneas. sometimes then they start to tear from the discomfort, and that only makes them burn and tear all the more.

is this a virus?

it seems to be cyclic in nature....i.e. it builds up, peaks, and then finally goes away; and comes back again a couple months later. i have not been able to discover what it is connected with.

i have learned to be very strict about using Celluvisc or some other moisturizing drop during these episodes, as well as to prevent them.

i am currently not taking any glaucoma drops, because i have had the trab surgery.

i wondered if the dryness comes from the fact that my pressures are now so low my eyeball has become flaccid to the point of not connecting with my eyelid at night when i sleep? my GS says that is not possible.

deena.
chobit_persocom <chobit_persocom@...

<<I have pretty bad dry eyes due to severe allergies(imagine hay fever
24/7!)and I wonder, do the medicated drops for glaucoma help or
worsen my dry eys?

I have had the same experience also. In fact, during one event
out of town, I was assigned to be part of the same small group as a
woman who happened to be blind, and her significant other, who could
see. We had to walk around outside a lot to different places each
day, and her significant other did a very good job of telling her
where things were like stairs, and crossing streets, and they were
able to do absolutely everything along with the rest of the group.
Her partner would describe purely-visual things that were happening.
Others in their life sometimes assumed that her sighted partner was
some kind of attendant, when in reality they were a couple.
This really opened my eyes (pun intended) to all the things that are
possible despite visual problems. That there are ways to be happy,
in contrast, say, with someone who is lying in a coma and can't do
anything at all.
Laurie

I'm a chronic pain patient with severe disc disease in my spine. I was given
cortosteroid shots several years ago, trigger point injections. Before I had
them done, my glaucoma was well controlled. The pressures stayed at 20 in
both eyes for years and I was only on Timoptic XE. Once I had those
injections, my glaucoma went out of control. Another pain doctor insisted I
have injections again but after reading on the Depo Medrol website, which
the maker of the injection med, I refused. Right on the mainpage it says for
glaucoma patients to not use this type of med. So, I knew more than my pain
doctor about the safety of steroids for me. I also had crying jags after the
shots I did have with the first doctor. I'm real sensitive to other meds
now. I can't take normal doses of common pain meds and have to take less
because smaller doses cause side effects. I think enough of the eyedrops get
in my system to cause systemic side effects. I could only tolerate 5 mg of
methadone instead of the normal starting dose of 60mg many of my online
friends have stared with on that med. So, be very careful about steroids.
From my experience, they do make glaucoma worse. Joan

Chris,
And with the prevalence of contact lenses, there are a lot more with vision
difficulties that we don't even see!
The really sad thing is that the people who are creating websites, designing
and printing books, labels, etc probably have 20/20 vision or are corrected
to 20/20 vision. They have no idea what it's like for those of us who don't
see 20/20 or can see 20/20 but still have difficulty with contrast (a *big*
problem for many people!). They'll do webpages with red fonts on black or
use really busy backgrounds that confuse the eye. Sure it's pretty, but
what good is "pretty" if you don't get your message across!
And there are those who wonder why older folks have such a hard time taking
meds! Even labels on prescription bottles are too small for many people to
read easily but the OTC drugs are the worse. They have to put so much detail
on the label that the print is miniscule and people with less than perfect
eyes just can't read it - so why try? They find out the hard way that
they've taken too much or too little or shouldn't be taking the OTC drug in
conjunction with other drugs.
It's so sad. That's one point I'm very vocal on. If I feel that something
isn't readable and should be, I'll contact the "creator". Or they just
lose my $$ because I won't purchase the book, magazine or whatever (which
reminds me, I need to send a letter to a magazine editor - I love the
magazine - at least what I can read of it <g
emails to webmasters and would you believe, I *never* hear back from them??
One that was really bad was a vision related website!
Sherry

Since my diagnosis I have noticed more people having trouble with
their vision. Today I was at Wal-Mart and there was a man with a
seeing eye dog. And quite a few people having a hard time reading
the labels. Finally one lady hollered 'I can't read this' to her
husband. And to just notice all the people in glasses. This of
course could just be trying to make some connection with my condition
and my surroundings. But I just thought I would share that with
everybody.

Here are a couple of questions and answers about astigmatism from a couple
of Wills' chats:
"P: How can glaucoma affect astigmatism?
"Dr. Rick Wilson: The higher the pressure in the eye, the less astigmatism
would be expected, as the pressure would tend to smooth out the cornea.
That effect, however, should be quite small."
http://www.wills-glaucoma.org/supportgroup/20031029.php
"P: Could astigmatism have anything to do with glaucoma?
"Dr. Rick Wilson: It can confuse the tonometry (measuring the pressure in
the eye).
"Moderator: How can astigmatism confuse the tonometry?
"Dr. Rick Wilson: Astigmatism means the cornea is not the same shape in
both directions. Imagine trying to remove a piece from the side of a
football, rather than a baseball, which has the same curve in all
directions. If you measure the pressure in the football along the long axis
of the ball, it is easier to indent the ball than if you try to indent the
steeper curve. The same holds true for the cornea and eye."
http://www.wills-glaucoma.org/supportgroup/20010523.html
I didn't see anything that indicates astigmatism causing glaucoma.
Sherry

Hi Deah,
I think that glaucoma can be a mystery that way. There's more to glaucoma
than high pressure, controlling the pressure is just the only thing that they
can do now. Hopefully you'll be able to get a second opinion and ask the new
Dr about this. I'm really sorry, that must be frusterating! Hopefully you'll
get some answers soon.
Laura
---- Original message ----

Sherry, I'm wondering if there's a way for the doctors to find out
what's causing the damage if it isn't pressure dependent. Yes, I
will ask my GS why there is so much damage in the eye which usually
has the same or lower pressure as the normal eye.
I don't have migraines. My 24 hour blood pressure monitoring from a
few years ago showed a low of 87/50, but from what I've read "low"
would be lower than that.
I don't sleep on that side anymore because as I mentioned in a
different post, that eye aches if I sleep on that side. I haven't
slept on that side for almost six months. I always thought it hurt
because of the vitreous detachment.
I've not had diurnal IOP monitoring so I don't know if it spikes at
night or early morning. The earliest IOP I've had was at 8 a.m. and
I think it was 20 in the good eye and 19 in the bad. Maybe it gets
higher than that when I first wake up.
One thing all of my doctors have mentioned is a scar I have on the
lower periphery of my retina. They said there is no way to know what
caused it. I keep wondering if there was an injury to my eye. Maybe
that's why the one GS said my optic nerve did not look quite typical
of glaucoma, but then it would have been just a one time thing, I'd
think, and I wouldn't keep losing more vision.
-Deah

Both my father and I have really bad astigmatisms. He and I are also
Glaucoma Suspect.
Is there a connection?

Does anyone know why, if you are only getting damage in one eye and
the other eye is normal, the pressures wouldn't be higher in the
damaged eye? Before starting treatment--well, actually even after
starting--the pressures in my eyes have been about the same or lower
in the bad eye, sometimes as much as three points lower (this was
last week, before I started treatment--it was 18 in the good eye and
15 in the bad eye). I don't understand why the damage is all in one
eye if there isn't a consistently higher pressure in that eye. Does
this usually mean there is something damaging the optic nerve other
than pressure? If that's the case, I don't really understand how
lowering the pressure can stop the damage.
-Deah

Max,
Sadly, at this time there's no way to regenerate the optic nerve.
Some glaucoma patients are very difficult to treat. Besides laser surgery,
there are also some other operative procedures such as trabeculectomy and
shunts. I hope he's going to a *glaucoma specialist* - not just an eye doc
who is interested in glaucoma. Glaucoma specialists have been specially
trained in the condition.
Not all meds work for all people. One person might get excellent results
with a med that doesn't help another person at all. Some people need to use
two or three different eye drops to get an effective lowering pressure.
If you're in the US, the American Glaucoma Society has a database of
specialists at http://www.glaucomaweb.org/patients/find.htm
It might not hurt for him to get a second opinion if he thinks that his doc
isn't doing everything possible. At the very least, he should be seeing a
glaucoma specialist!
Sherry

Monica,
It's not a list per se, but one of the Wednesday night chats in the Wills
Glaucoma Service chatroom, Dr. Werner discussed "Potentially Unsafe
Medications for Glaucoma Patients". You can read the transcript on their
website at
http://www.wills-glaucoma.org/supportgroup/20040428.php
Sherry

Hi all,
I have a friend whose father has suffered from serious Glaucoma.
One side of his eye is completely blind and the other one is almost
60% damage. Even he has undergone the laser and also eye-drop, but
the eye pressure is still high (over 30). He is about 60 years old.
My question:-
1)Any way or technology to recover his vision for the blind eye?
2)Any way to reduce the eye pressure?
3)Is it Carpine effective to reduce the eye pressure
Thanks.
Max

Hi,
Will someone please tell me where I can get the list of medicines
that make glaucoma worse? I had it and can't find it now on the
computer it included decongestants and cortisone nasal spray certain
antihistamines etc. I would appreciate it greatly.
Sincerely,
Monica

If vertigo is connected with glaucoma, then I guess that's what
damaged my eyes. A few years ago I had what is called benign
positional vertigo. This means that in certain positions, I would get
vertigo so bad I would vomit. Usually this would be the kinds of
positions you mention. I did see a doctor but she said it would go
away on its own, which it did but it took about a year.
It's also possible you have low blood pressure. You should tell your
doctor about your vertigo.
The numbers 22 and 21 are probably your eye pressures. Your glaucoma
specialist will tell you whether or not he thinks those pressures are
okay.
-Deah

Hi, it has been my experience that some of the glaucoma drops, especially
Alphagan for me, make my eyes really dry and sore and tired. Thay can also
make you light sensitive. I have no idea about the vertigo, but I have never
heard of it being a symptom of glaucoma. As for the measurment, that sounds
like your pressure readings - 22 in one eye and 21 in the other. Someone will
probably give a more technical explanation, but basically the higher the
number the higher the pressure is in your eye. A normal number differs for
everyone. Ask your Dr what he/she wants your pressures to be and if 21/22 is
in your "target" range.
Good luck!
Laura

I have pretty bad dry eyes due to severe allergies(imagine hay fever
24/7!)and I wonder, do the medicated drops for glaucoma help or
worsen my dry eys?
Also about 3 months ago I started getting vertigo when I sat up from
laying down position, when I bent my head down for periods of time
(like washing my hair) and when I layed down for the nite. It didn't
happen everyday and seemed to happen when my eyes felt "tired".
Could this have been a symptom of glaucoma?
When I had my vision checked the dr put in the dilation drops and
also a dye to check my dry eyes. Ever since I have felt like my eyes
are more sensitive to light, computer work and just feel tired. It
almost feels like someone has their thumbs on my eyeballs. Is that
just me? My prescription did change for my glasses and my new
glasses aren't in yet.
Also the dr said from what he could see my right eye measurement was
22 and the left is 21. What did he mean?
I have to wait for a month to see the GS and it is killing me...I
try to keep happy thoughts but its even harder after finding out my
dad is a glaucoma suspect.

I am on Xalatan. I sure don't see or feel anything different. But I
am normal tension so I'd guess there wouldn't be a dramatic drop in
pressure anyway. My pressure after a few days on Xalatan was
actually higher than before--I only take it in one eye. Maybe
Xalatan takes time--my GS did say it works better the longer you use
it.
-Deah

You are right, my husband and I were surprised at how many of our
friends have eye problems, including glaucoma--but none of them have
significant vision loss as I have. That's why they don't seem to
understand why I'm taking this so hard.
It just doesn't help to hear stories about someone's cataracts--a
problem which can be fixed--or people with high eye pressures and no
visual loss who keep telling me to just take my drops and everything
will be fine. Or the people who tell me maybe Lasik would help me
regain my sight, or the ones who assure me that with all the modern
miracles of science, there must be some kind of surgery or laser
treatment that restores vision.
It also doesn't help for people to tell me what I should have been
doing. I was doing all the things you are supposed to do--yearly
dilated eye exams. After all, at my age some sources say you only
need to have them checked every two years.
-Deah

Yes, I've been getting it lately: a LOT.
Do you think it could be a virus?
Laurie

Deah,
And even sillier yet is the question "How's your glaucoma doing? Any
better?" as if it's the flu or something <rbg
I thought I was all alone with glaucoma until I started mentioning it to
people - and found out that so many people *are* affected by it or know
someone who is!
Sherry

Deah, when I was first diagnosed I put in the first Timoptic drop and it was
heavenly! My vision was clear right away. My pressure was like 49 though, so
I'm sure that makes a difference!
It has been my experience that they do work right away (and dry my eyes out
right away lately!), but for the full effect I'm not sure if it takes awhile.
I recently added Xalatan and can't really feel that it is making a difference.
Someone else will probably have a better answer,
LAura
---- Original message ----

I read some posts about this in the archives, and I'm dealing with
it myself now. I know my friends and family mean well, and really
there isn't anything they can do to help, but they do keep asking if
my eye is any better, or did I get any good news yet from the
doctors. I've been slowly breaking the horrible news to friends--for
the first couple of weeks I didn't have the strength to even talk to
anyone--and a lot of times the response I get is "hey, join the
club. I've had glaucoma for years. Just take your drops and you'll
be fine." Even when I explain that I've already had significant
vision loss and it's getting worse, they keep assuring me that the
drops will treat it and I'll be fine and they think I am being silly
worrying about going blind.
How do the rest of you handle this? I am starting to think it's
better not even to tell them; even the ones with glaucoma don't
understand. The only person so far who does have an inkling is a
friend of my husband's, who at age 44 developed macular
degeneration. However, he's had it five years and with treatment
it's not progressed, and he really has only lost the ability to see
the color red, not any actual acuity.
My mother, bless her heart, offered me one of her eyes, and I had to
explain that even that would do no good with vision lost to
glaucoma, not of course that I really want someone to give me an eye.
-Deah

The poem was beautiful, Mia!
What I hold onto, in dealing with this: although at first
I was afraid that in the unlikely event I lost my vision,
I would no longer have beauty in my life: then I realized
there was a form of beauty that I had been neglecting,
and yet it was all around me: and that is the beauty
of music.
I think that if I was ever in that situation (and my doctor
feels it is very unlikely), that especially if I lost
the ability to see and experience colors, that I would
throw myself into music: perhaps join a local choir
or other singing group (one that was amateur enough
not to require a really good voice! Just a bunch of people
who get together and sing).
And if that is the case, why not do it now? There are so many
things I am caught up in like my job, and my volunteer work
with the peace movement, etc., and cannot add a whole lot
without burning out.
But sometimes we have to think about what is really important
and what needs nourishing, and your poem helped me to think about
that.
Laurie

When you start eyedrops, do they lower your pressure right away, or
does it take a while to build up? I mean, if they are going to work
at all. I am curious because I read about certain kinds of eyedrops
that are used during I think laser surgery to prevent pressure
spikes, so it makes it seem as though the effect is immediate.
-Deah

Joan, the reason I am so late in being diagnosed with glaucoma is
that the ophthalmalogists and retina specialists I had been seeing
all said the optic nerves looked healthy to them. When my retina
specialist finally agreed it could be glaucoma, I asked him how all
these doctors could have missed it all this time and he said
sometimes the changes are subtle. I guess I am just one of the most
unlucky people in the world to not only have normal tension glaucoma
but healthy looking optic nerves so that even though I have been
vigilant about yearly dilated eye exams and have been going to what
I thought was one of the best ophthalmology clinics in the city, my
glaucoma was missed until it was too late. No, I don't think any of
the doctors who examined me lied about not seeing any optic nerve
damage.
I now have two glaucoma specialists saying that it is glaucoma, but
there's some doubt about the appearance of the optic nerve,
apparently. OCT did show thinning of the optic nerve fiber, so
obviously there is optic nerve damage. I was examined by so many
retina specialists I don't see how there could also be a retina
problem they all missed too along with the glaucoma, but who knows--
I am obviously not a typical case.
I am trying to stay positive, but as I said, at the rate the damage
has been progressing, it's not unreasonable for me to assume that
it's likely enough that within a few months the damage will reach my
central vision and I will become if not blind, then low vision in
that eye. It's my dominant eye so the visual loss is more apparent.
I can hope that the drops I am on now do something, but I know that
many cases of NTG progress even with treatment. I have not been very
lucky so far in all of this, but I guess I can try to tell myself I
might be one of the lucky ones in terms of treatment.
-Deah

Deah, I'm no doctor, but I agree with Laurie. It sounds like a retinal
problem if these doctors are swearing up and down your optic nerves are
fine. It can't be from them if that's the case. They sure wouldn't lie about
it. Doctor Ritch said to trust your doctor, so I would. I have alot of
changes going on with my vision--but I think it was Laura who said she tries
to stay positive--I try to ignore it all. I was on four eyedrops for years,
had trabs last year, one that failed, and now I'm to the point where I just
do the drops and go with the flow. No amount of stressing is going to change
this, or make it better. Maybe having more than one medical issue is a good
thing in a way because it's been so bad so long I'm immune now. Our brains
become protective. Joan

Mia and Deah,

I didn't mean to downplay your affliction and discouragement with your loss of eyesight. It" is "a difficult thing to accept especially when it happens so quickly. I too, was both upset and discouraged about my diagnosis of glaucoma and then Macular D. With my glasses I have a 20\20 in my right eye and 20\25 in my left eye. Without my glasses things are blurry but I haven't notice any peripheral vision loss or central vision loss as yet, that I can tell. Edges on doorways and windows ,etc. are still straight. So hopefully these eye disorders will continue to progress slowly ,if they have too! My eye pressures are 18 in both eyes, with about 1% optic nerve damage in both eyes.This is all according to the ophthalmologist last month.(Jan.)

I guess that is why I am feeling so optimistic at the present also I do find going to a support group once a week helpful in helping cope with this new affliction. ( There are secondary ones but we won't get into that here). The group prepares me for what may come and gives me hope that there is life after blindness or low vision loss. My opthal. tells me I won't need to learn braille for another 5 to 10 years. To me that doesn't seem that far away!

Lorraine

Sorry folks, if you want to send the e-mail back to me that you sent to me originally. My e-mail box was exceeding its quota and they didn't get to me.Thanks.

Lorraine

Aaryan,
Yes, I can understand your point and agree but my main concern is meeting people
in person. Glaucoma has already cut me off from "real" life to a large extent
and I'm very aware of how easy it is to give up and become a complete recluse.
However, I have received an email from someone with information that looks like
it could help to a large respect. Best wishes for your forum, I'll join and see
if it's appropriate for me.
Mia

Re: your experience in the bowling alley. I went into a Multi car park with
poor lighting and went to get a ticket. The machine was new - grey and had an
arrow which I could see and which said press the green button. The green must
have been dark because I could not see it I had to feel along from the arrow
until I felt the button. I think I can't be the only person using a car who
can't see this surely. Why didn't they use a yellow. Morag

yes I get that.

Deah,
I asked Dr. Ritch about Dr K, whom you're seeing now - he said "she's in the
best hands with Dr K".
So just relax, if you can, and know that you have a really good glauc doc
now!
Sherry

Does anyone else get this?
Whenever I send a message to the group I get this notification:
+++
This is an automatically generated Delivery Status Notification.
Unable to deliver message to the following recipients, because the message
was forwarded more than the maximum allowed times. This could indicate a
mail loop.
tomquinn@...
+++
Is there any way to stop it from happening?

Hi, Joan. No, both doctors prescribed Xalatan, it just took the
doctor I am upset with an extra ten days to make a diagnosis.
How many doctors have I seen for this? Okay, here it is: I suffered
a posterior vitreous detachment in Sept. and went immediately to the
ophthalmalogy clinic because I knew the symptoms of a retinal tear.
I was diagnosed by the head ophthalmalogist there. I noticed then a
difference in vision between the two eyes but she said it was due to
the PVD. A week later I could see it was getting worse so I went
back and saw the retina specialist. They suspected a retinal tear
but after three of them all examined me, they decided my blurred
peripheral vision was due to the collapsed vitreous. Ten days later
it was still getting worse so I went back and the retina specialist
had yet another colleague examine me. During this time I also saw my
optometrist; she said my optic nerves looked healthy and looked back
at my records for the past five years and said she had not observed
any changes so she said it wasn't glaucoma.
I kept getting monthly checkups with my retina specialist
complaining that I was losing vision and he kept checking and said
he didn't see anything wrong and that it would get better once my
PVD "resolved." When it didn't get better, he finally believed me
and ordered a visual field test. But he kept saying all along that
he could not detect any damage to the optic nerve. Since the visual
field test was suspicious, he referred me to the glaucoma
specialist. I also paid to see a second glaucoma specialist outside
my insurance coverage. No, I didn't tell the first one I was getting
a second opinion, but the second one knows and it sounds like he
does it all the time.
So how many doctors have I seen for this? I've lost count. Since I
was misdiagnosed and lost vision because of it, I am naturally wary
and skeptical now.
-Deah

Hi, Deena. Yes, they are both glaucoma specialists.
I guess it doesn't matter why I am noticing more vision loss than is
showing on the visual field defect. I know those are supposed to be
pretty sensitive but in the areas closest to my central vision what
I see is blur--maybe those don't show up on the field test because I
can still see the flashes of light, even the faint ones, but it's
just blurred. Apparently most people don't notice when the visual
defects start and they are just a lack of resolution or lack of
sensitivity--I guess you wouldn't notice if it was in your periphery
but this is close enough to my central vision that I perceive it as
a blur or smeared area. I have to restrain myself from wiping my
glasses constantly because logically I know it won't help, and
putting re-wetting drops in my eyes when I wear contact lens won't
help clear the blur either.
I guess glaucoma just proceeds differently for different people. I
am coming to realize there's nothing can be done but use drops and
hope maybe it won't get too much worse too fast. Like most people I
used to have more faith in what doctors can do to help you but
apparently with this condition it's more of a guessing game.
-Deah

I have also noticed problems seeing people that are dressed in black
and walk out in the street between stopped cars. I mean at night, so
that the glare of headlights is behind them. Yes, they are usually
young people. I am not sure I have trouble seeing them because of
glaucoma; my husband says he has trouble seeing them too in such
situations and he doesn't have glaucoma. I thought it was just that
once you are past 40, your night vision starts to decline.
Fortunately I can still see people when they dart out in traffic
like this, even though it can be harder to make them out, but I do
see a lot of near misses when other cars can't see them and stop
short.
-Deah

here's a paper we wrote back in the late 80s

Laurie,
I gave up trying to figure out how to sleep! Back sleeping is very
uncomfortable for me, I prefer stomach sleeping, but that kills my neck and
side sleeping seems to be the "safest" way for me to sleep, unless I've got
my fist stuck in my eye (which I'm more prone to do when I stomach sleep).
The really *big* problem is, no matter how I start out when I fall asleep, I
usually wake up in the middle of the night on my stomach with my neck really
hurting and feeling my ring pressing into my cheek or my fist in my eye!
Guess we need a "mold" to fit ourselves into when we go to sleep so we stay
put <rbg
Sherry

I agree with Mia. It is very different for those of us with
noticeable vision loss, especially if it is progressing. Six months
ago I didn't know I had a problem with my vision; a month later
everything changed, but even then, I had to keep comparing between
the two eyes to even be sure there really was a difference between
them. Now there is a dark, blurry veil over most of the upper half
of my affected eye. It's difficult to make plans for the future when
at this rate it's very possible that in another few months I will
not be able to functionally see with one eye.
I think, however, those who just have high eye pressures and no or
very little vision loss at this point have reason to be optimistic.
-Deah

Deah, I'd stay with the doctor who put you on Xalatan. This new one doesn't
want to do anything, and honestly, if you're seeing vision loss, doing
nothing isn't the right thing to do. Why doesn't this guy believe you? How
crazy is that? How many doctors have you seen for this? Do you tell a new
one that you're seeing another one? I wonder if that makes a new one
hesitate on doing anything, almost like all you want is an opinion, not
treatment. I don't imagine my GS would like it if saw someone else, now that
he's operated on me. Don't insurance issues come up? Wouldn't they steer
clear of involvement in a patient that might be seeing more than one doctor
in this day and age? Joan W

Dear list members,
It has been a while that I have posted on this list, but when I was
diagnosed with glaucoma 7 years ago it was a great help!! Meanwhile I have
graduated, worked and recently moved to New Zealand.
Now I would like to ask you for your help again: I am
currently undertaking my PhD in computer science. For this I plan to
develop a system which can help and support us in the management of our
glaucoma. Since the system should suit your needs it would be excellent if
you could take part in a survey that I have prepared to find out in how
far such a system can help you.
To take part in the survey or to find out more about the project, please
go to: http://www.cs.waikato.ac.nz/~dj20/Questionnaire/Survey.html
Thank you very much - I really appreciate your help!
Doris Jung, University of Waikato, New Zealand

I tried sleeping on my back and could not master it: it's not that
it's uncomfortable, but it just felt weird".
So: is the following sleep position "safe": with several pillows on,
sleeping on my side with the weight of my head mainly on the area
from my ear to my cheekbone?
Laurie

I am really running behind on my email but after reading the post that I copied and pasted below. I would like to make a comment about shadows.

Not all the time but a lot of the time, shadows are an afternoon problem for me. At this time of the year, any time after 4 o'clock can cause a problem. After the sun is down but it is still daylight, then it is better.

Also I have found that a large number of people, police included, will stand in the street with dark clothing on and expect you to be able to see them. If you will look closely at them, you will notice that they are young. I don't think these type of people live to be old.

Darnell

Message: 3
Date: Mon, 24 Jan 2005 11:36:17 +0000
From: Maureen Egner <moragtheresa@...
Subject: Re: vision
I must say I think this is a very good site for helpful advice, and info for glaucoma suffers. I have not seen anyone mention a problem that I have in recognizing people when out. I don't know whether it is the glaucoma or the cataract that is causing the problem. Like today for instance, I took my dog into the allyway near our house and noticed a man walking towards me then when he spoke I realised it was my husband of 40 years!! Who had popped out earlier to take the car for its MOT.
Also when crossing the road in bright sunlight and the road ahead is shadowy I don't see a car coming until it away from the shadows, a couple of times I've had to step back sharply onto the pavement. Look forward to hearing your comments. Best wishes Morag

Hi Diane,
Right on! I think that everyone on this list should always be aware that
people might think that some activity is harming their glaucoma, when really
it isn't at all. You all have to read these lists and supress the freak out
factor. Everyone with glaucoma (unless you are in denial) is going to worry
and most of us will worry too much, but there is something to be said for
living. I started reading the thread about flying and got worried - even
though I have flown numerous times in my 14 years with glaucoma and had no
problems. I was on a flight Sunday checking to see how "firm" my water bottle
was at altitude changes and doing some digital pressure checking! It has been
my experience that messing with things, such as sleep or the way you do your
drops, can cause more problems than it cures. I have a wonderful Dr who is
always telling me not to worry about these things and to just live and that
was wonderful advice. For my first 12 years with glaucoma I didn't know about
cup discs and and occlusion and those were my happiest years and my glaucoma
was under control and most importantly, I wasn't freaking out all the time.
It was only when I switched Drs and they scared me and I became google crazy
and started learning about every little thing that my life felt like it was
controlled by glaucoma.
Also, I think that it is important that everyone know what type of glaucoma
that they have because a lot of the concerns and restrictions only apply to
certain types and there is no use scaring yourself for nothing.
Personally, I LOVE to travel and to fly and since I don't see well enough to
drive it's especially important to me. I also climbed a (small) mountain last
week and it was a great experience and much more rewarding than my usual days
of sitting around coddling my eyes.
Best of luck to all,
Laura

Diane,
I used Xalatan for 5 years - it's definitely not a "gloppy" drop! It's as
watery as the rest of them and will quickly run out of the eye. It
definitely "squidged" out when I closed my eyes and definitely ran down my
tear ducts as I could *taste* the stuff if I didn't get the ducts occluded
correctly or quickly enough!
Sherry

Hi Raffaele,
I don't work in your same indusrty but I did PD before
my transplant. I worked 40 hrs a week up to my
transplant with the PD cathetar. I was given a machine
that would do an exchange for me while I slept at
night. So that way I wouldn't have to do an exchange
while I was at work. I had no problems doing PD. As
long as you feel good, keep doing what you are doing.
I was the same way. I even had a second opinion
because my Neph. told me that I should be at home
practicaly dead with my test results. I think at the
time I was digagnosed, my creatinine was at 6.8 and I
had 22% total kidney function. I figured she had got
my results wrong but the other Neph. I went to said
the same thing. I have been rejection free, Thank God
and my best friend, for almost 4 years. You can
definitely do PD and keep working your normal hrs as
long as you are physically able to. DON'T OVER DO IT
THOUGH. Keep yourself healthy and watch what you are
eating and drinking. Good luck and best wishes.
Kiersten

Hello everyone,
When I was first diagnosed I read somewhere that glaucoma doesn't have to change
your lifestyle. Yet, I read that possibly sleep positions are important, high
altitude climbing can be bad and by the way, what's the effect of air travel?
I'm getting excited now. You mean to tell me that I need to give up my favorite
weekend activities: drag racing and skydiving?
I'm kidding, but only a little. The face of a loved one or a beautiful
landscape or painting are things to be treasured and appreciated with the eyes,
true. And like many of you, my eyesight is important for my job. But you know
what? Memories are also very powerful. Ask a mother or father about the first
time they heard their newborn child's cry. The hissing, sulpher smell of the
geysers at Yellowstone will stay with me forever as will my only experience with
a minor California earthquake. A Minnesota loon calling across a lake for his
mate is so beautiful and unmistakable. And chocolate... need I say more?
Sure, I panicked when I thought about the possiblity of losing my sight. After
all, my darks are getting darker and my lights are getting.. well... darker. It
would change my life, start a new life as it were. I'd grieve for a long time
and would be depressed. Change can be scary, I don't like it if I can't control
it. So, I'm planning. I'm a great planner. It helps me feel like I'm in
control. Losing my sight could mean I would finally be able to get into my true
avocation: writing. I wouldn't have to wait until I retire from my day job.
Very cool.
My philosophy for life is to have fun until I die. I'll be prudent about my
health sure, but.you know what? A tandem jump from an airplane sure sounds
inviting to me.
To the memories, Diane

Hello Everybody,
I will get the PD cathether inserted in Febraury.
I just cannot believe ! I still feel fine and I am
active but my creatinine is 5.4 and the doctor is
saying is time ....
I am 45 and working full time as an electrical engineer,
so it is a "mental" office kind of work.
Is there anybody on PD and working full time with my kind
(office)job? A part from the obvious initial difficulties,
is it doable ?
That is what I am most "terrified" of since I have 2 kids
and wife to provide for ?
Thanks for sharing,
Raffaele

Isn't Xalatan the "gloppy" drop? Probably wouldn't fall out of a person's eye even if they're looking down.

I used punctal occlusion with Asopt (funky, liquid chalky stuff) because it was the only one out of about half a dozen I've been on over the years, that I could "taste". Yuck.

Diane
dshale1 <Dshale1@...

Just to add to this, the GS I saw today showed me how to do punctal
occlusion, but he said with Xalatan it really doesn't matter if you
do it. Maybe it depends on the medication.
-Deah

Sue,
My guess is that your fatigue and lack of energy is due to your low
potassium level. I was hypokalemic several years ago after a surgery
(at that time, my creatinine was 2.3). I spent a weekend basically
laying down, and when I DID lay down, I had difficulty keeping my
arm from dropping down off of my side; I also had trouble keeping my
head from falling forward or off to the side while sitting. This was
from muscle weakness from a low potassium.
Take your potassium supplement, and I bet after several days you
will feel much better.
Jeff

Deah: a good question to ask one or the other of the glaucoma doctors might be
why the visual field damage didn't match your optic nerve damage, and also how
they are sure that
POAG is the "only thing this can be", given that fact?
Have you asked them also: if it is possible that some of the visual field loss
could be due to the retinal stuff (that might reverse) that your retinal doctor
originally thought, or at least due to other stuff, and if so: what?
Laurie

You need a visual field test and demand the results. If you have had previous
field tests demand them too.
It's your right. I have detailed copies of mine but it took persistance.
Mia

I spent most of today at the hospital getting my eye pressures
checked. I guess three days is too early for the Xalatan to kick in
but my pressures were higher than they have been in the past--as high
as 21 in the normal eye and 20 in the affected one. I think it's in
part because this doctor gets me so upset. He said he was diagnosing
POAG because even though my case is atypical, "there's not much else
it could be." He said my glaucoma is not typical because 1)most
people would not even notice a change in eyesight at this stage, but
as I have described, to me it looks almost like tunnel vision in the
upper part of my eye, except instead of being all dark it is blurry
and shimmery the way glaucoma is at the beginning and 2) the
appearance of my optic nerve does not match the visual field defect.
So he wants me to come back in a month for another field test.
I am afraid that since I must be more sensitive to visual changes
than most people, by then I will be experiencing even more loss of
vision whether he believes me or not. He did do some tests of color
vision and there was one I missed with the bad eye, even when he
repeated it several times but he said I would have missed some of the
others too if there was a big problem with the optic nerve.
I am not sure what to do. I was misdiagnosed before and lost vision
because a doctor said my case was atypical but he wanted to just wait
and see. I asked about an MRI but this GS said he wasn't going to
order one. I don't understand that unless he just doesn't believe me
that this is progressing fast and wants to wait for the next visual
field test. But I am terrified of losing even more vision just
because he needs proof that it's progressing fast.
I just feel helpless because at this point all I have is eyedrops and
I don't even know if those are really going to help. I'm scared that
I will go blind in that eye before these doctors will decide maybe
something else is going on. The other GS I saw a few days ago
basically diagnosed NTG on the visual field test but he also sounded
a little unsure about the health of the optic nerve. I wonder if I
should get a third opinion or am I just in utter denial that the
whole thing is happening to me?
-Deah

Sometimes my cyclosporine levels get too high and that makes my bp rise. My neph just lowered the dose of cyclo and the bp went down.

Barb

Bridget, for a doctor to say you couldn't do ocular occlusion right is
downright funny. I've had glaucoma for years. I've always used the occlusion
method, and feel it has kept alot of meds out of my system and in my eyes
where they belong. That doctor should feel the difference for himself. I can
feel the med sliding down my throat if I don't occlude. Please use your own
common sense on this one, and listen to the ones who've used the drops for
years. Joan W

No, I did not put off starting treatment with drops; I started drops
as soon as someone was willing to give a diagnosis. But there was a
long delay (five months) in my being diagnosed, because the doctors I
was seeing did not think I had glaucoma.
-Deahvbgggggg

Fall 2006

In This Issue:
* Initiative Seeks to Boost Fistula Use
* Early Type 2 Diabetes Linked to Higher Kidney Failure, Mortality Risk
* NIDDK News
* NKUDIC Coordinating Panel Meets
* NKUDIC Fields More Than 8,700 Information Requests
* MRI Provides Early Alert to PKD Progression
* NIDDK Transitions
* Talking Health at Family Reunions
* New Publications From the NKUDIC

http://www.niddk.nih.gov/index.htm
http://www.nih.gov/
http://www.hhs.gov/

Not being a doctor or a scientist, I think that I was mistaken in making the
statement that "stem cell research might be a pipe dream": after all, there are
many scientists who feel that it is not.
I was wondering whether doctors, or others familiar with some of the
developments being worked on that give hope, might be able to mention what some
of these developments, which may result in new treatments over the next years,
are?
Even in the last few years: they have come up with the prostaglandin analogues
(i.e. Xalatan/Lumigan/Travatan)
that only have to be taken once a day and have minimal side effects. And I am
sure there are more coming soon too.
Laurie

I have a few questions are you on any blood pressure meds for water retention (diuretic?) Is your BP under control? The bloat and the low back pain were my symptoms before getting a diuretic. My Nephs were only checking my ankles and they were fine it was all being retained in my stomach. Linda
stormy607 <stormy607@...

I just had my blood levels done again, and my creatinine is 2.3 and BUN
is 37. (6 months ago creatinine was 1.9) My potassium is really low and
Dr put me on Rx strength replacement. I am having low back pain,
(reminds me of cramps pre- hysterectomy), and have extreme bloat by the
end of the day and I generally feel tired and no energy. I read at the
sites and get a general feel of what is going on, but does anyone here
have any suggestions? I just don't know what to do? Is there anything
anyone else is taking that is helping? I am on Teneretic for HPB and
the KCL and that is all...please advise.
Sue

By the way it's "punctal" not "punctual" (though I suppose it could be
punctual if you did it on time!).

I just had my blood levels done again, and my creatinine is 2.3 and BUN
is 37. (6 months ago creatinine was 1.9) My potassium is really low and
Dr put me on Rx strength replacement. I am having low back pain,
(reminds me of cramps pre- hysterectomy), and have extreme bloat by the
end of the day and I generally feel tired and no energy. I read at the
sites and get a general feel of what is going on, but does anyone here
have any suggestions? I just don't know what to do? Is there anything
anyone else is taking that is helping? I am on Teneretic for HPB and
the KCL and that is all...please advise.
Sue

My ophthalmologist *mentioned* it when I was first diagnosed, but he didn't
make a big deal about it at all.
I suppose technically, no one *needs* to do it.
I find it eliminates side effects, and I assume it does no harm, so overall
it's worth it.

My doctor also said I didn't need to do punctual occlusion.
However I figured it couldn't hurt, so I do it.
Wondering if there is a controversy among doctors about it:
why, and is it just that they figure that if they tell
the patients to do it, that maybe they won't do it,
so it's better not to give them an assignment they won't do,
since compliance can be an issue anyway?
Laurie

Deah, it's downright strange that your doctor told you to use a warm
washcloth to cover your eye after putting in drops. I've never been told to
do that and I've had this since 1992. I press gently on the inside corner,
the ocular occlusion, for about three minutes. This keeps