----- Original Message -----

From: Trish

To: adie_syndrome@yahoogroups.com

Sent: Wednesday, April 04, 2007 9:47 PM

Subject: Re: [adie_syndrome] Eyes

You might as well get used to it because it's probably never going to go away. I've been dealing with it now for 6 years.

 

Trish

Hello there

 

I have been diagnosed a month now, saw my eye doctor today actually.  i feel fine about it, i know it is not life threatening, yes a little uncomfortable at times, but all in all not that hampering to my day to life.   The only thing i don't like is, noone can tell me how long it will last, and we cannot tell at the moment if the other eye will become affected.

 

How you finding it?

 

----- Original Message -----

From: SugarPlumGinger6@aol.com

To: adie_syndrome@yahoogroups.com

Sent: Friday, March 16, 2007 6:15 AM

Subject: [adie_syndrome] Eyes

Hi

I just found out a few weeks ago about my eye !!

What are your feelings with this syndrome?

Anything you want to share with me I would love to hear it.

 

GiGi

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----- Original Message -----

From: elaine

To: adie_syndrome@yahoogroups.com

Sent: Monday, March 19, 2007 7:02 AM

Subject: Re: [adie_syndrome] Eyes

Hello there

 

I have been diagnosed a month now, saw my eye doctor today actually.  i feel fine about it, i know it is not life threatening, yes a little uncomfortable at times, but all in all not that hampering to my day to life.   The only thing i don't like is, noone can tell me how long it will last, and we cannot tell at the moment if the other eye will become affected.

 

How you finding it?

 

----- Original Message -----

From: SugarPlumGinger6@aol.com

To: adie_syndrome@yahoogroups.com

Sent: Friday, March 16, 2007 6:15 AM

Subject: [adie_syndrome] Eyes

Hi

I just found out a few weeks ago about my eye !!

What are your feelings with this syndrome?

Anything you want to share with me I would love to hear it.

 

GiGi

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----- Original Message -----

From: SugarPlumGinger6@...

To: adie_syndrome@yahoogroups.com

Sent: Friday, March 16, 2007 6:15 AM

Subject: [adie_syndrome] Eyes

Hi

I just found out a few weeks ago about my eye !!

What are your feelings with this syndrome?

Anything you want to share with me I would love to hear it.

 

GiGi

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 Hi

Just found this list. It is a good support system.

 Was hoping to read posts.

 Does the list generate any mail?

 

 GiGi

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Thankyou David for setting up this group, which to many of us has been
a real blessing, if it wasn't for this group in the beginning i would
of felt truly isolated, so i just wanted to let you know how thankful
i am that you took the time to set the group up for us.
Thankyou and God bless you David.
Kind regards Michaela

My name is David and I am the Founder of the our yahoo support group and the TransGlobal Health Community Center (TGHCC). This group is one of more than 600 others that make up the TGHCC. The TGHCC helps promote our groups on the web.

Website: http://transglobalhealth.com

Yahoo Messenger: transglobalhealth@...

eMail: dhhughes@...

Send instant messages to your online friends http://au.messenger.yahoo.com

Kudos to you for keeping up a brave front with your
mutliple problems and conditions. Mya God grant you
strength and endurance to fight the odds like that
only.

Regards,

Rupesh

--- Kathy Erickson <ozzymommy1962@...> wrote:

> What cannot be cured - must be endured. I LIKE THAT.
> Really,I do. I have many other *symptoms* IBS, the
> sinus stuff, fybromyhalia (spelling?) etc etc. I had
> a horrendous eye twitch for over a year! It was
> visible to myself and everyone else. The docs said
> that I was just tired and needed more sleep -
> yeah,sure. I do try to put all of this into
> perspective and get on with life as these are the
> cards that I am dealt - just play the game. I was
> diagnosed some 13 years ago. I am 44 years young
> with 3 children: a 25 year old, a 16 year old, and a
> 7 year old. none of them display symptoms as of yet,
> thank God. It has been difficult at my new job as a
> claims processor for an insurance company, as I am
> constantly on a computer and am also dyslexic, so it
> is doubly difficult for me. I do get a tad
> frustrated at times, I'll admit. I am slower at my
> job than everyone else, and if it becomes an issue I
> may tell them of my dyslexia, but I will probably
> just blame it on aging for quite
>  some time. I also wait tables on two weekend nights
> and I work with all college kids and teenagers -
> they just think that I am old when I miss a step, or
> cannot navigate as quickly as they do on our
> computer system. That is fine with me. I
>   I do think that it is vital to tell employers
> about the pupil thing and lack of reflexes, as well
> as any EMT's that may be on staff in case you are
> one day unconscious - that is something that they
> NEED to know to be able to treat you properly. I
> have no reflexes what so ever anywhere anymore on my
> body and my pupil has gone from blown up big to
> small over the years (don't know when that
> happened).
>   Happines and acceptance to all -
>   Kath
>
> Herzog <rups234@...> wrote:
>           --- In adie_syndrome@yahoogroups.com,
> linja@... wrote:
> >
> > For an interesting (but not encouraging) article
> about adie's
> syndrome, see
> >
>
http://www.medic8.com/neurological-disorders/holmes-adie.htm
> >
> > On a lighter note, see
> http://www.oedilf.com/db/Lim.php?Word=Adie's%
> 20pupil
> > for a limerick about adie's pupil.
> >
>
> Yes, you were right, the article was interesting but
> not encouraging,
> but seeing the large list of ailments under the
> "neurological
> disorders" and under various other heads too, and
> realising that I
> had only one of these, was sort of satisfactory.
> This is after quite
> a long time that I am responding to something in
> this group,
> otherwise, I don't think much of either this
> condition or anything
> associated with it that reminds me of it. "What can
> not be cured,
> must be endured" works really well for me and I pray
> that it shall do
> the same for other memebers of the group as well.
> So, I urge you all
> to kindly take your Adies in your stride and don't
> think too much
> about it. God has definitely given us more endurance
> than what is
> demanded by this disease. So, look at the brighter
> side of the
> things, even if with your Adies affected eyes only
> (tongue-in-cheek,
> ofcourse). And, remember that only unique people are
> endowed with
> unique things. Wishing you all health and happiness
> always! Rupesh
>
>
>
>
>
>
> ---------------------------------
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> Try the Yahoo! Mail Beta.




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Yes, you were right, the article was interesting but not encouraging,
but seeing the large list of ailments under the "neurological
disorders" and under various other heads too, and realising that I
had only one of these, was sort of satisfactory. This is after quite
a long time that I am responding to something in this group,
otherwise, I don't think much of either this condition or anything
associated with it that reminds me of it. "What can not be cured,
must be endured" works really well for me and I pray that it shall do
the same for other memebers of the group as well. So, I urge you all
to kindly take your Adies in your stride and don't think too much
about it. God has definitely given us more endurance than what is
demanded by this disease. So, look at the brighter side of the
things, even if with your Adies affected eyes only (tongue-in-cheek,
ofcourse). And, remember that only unique people are endowed with
unique things. Wishing you all health and happiness always! Rupesh

Hi there

I was wondering if anyone had been advised to try vitamin supplements
for this condition. Like lutein see:
http://www.blackmores.com.au/Products/Detail.aspx?ProductId=1950

I have it, was diagnosed about 6 months ago. I find what I would
describe as muscular pain behind the eye at night to be the most
annoying. Does anyone else have that? I put it down to tiredness
(eg waking up to feed the baby at night doesn't help!)

Also, does anyone get twitching in the affected eye? My Dr suggested
magnesium.

Does anyone use polarised sunglasses - do these help more than normal
glasses?

Also, for the headaches does anyone use the Migrastick?

Many thanks.

Hi,
I have been wearing polarised sunglasses for the past 3
months and they make an enourmous difference.  The first
time I tried them on in the shop I felt my eyes relax, which
was an interesting feeling when you don't realise they are
feeling stressed to begin with. They block out the glare
that regular sunglasses don't, thats why they are often worn
by fisherman as they make it easy to see fish in the water
without the suns glare being reflected back in their eyes.
I definitely recommend that you at least go and try some on.

By the way I get that muscular type pain at times too, its
not painful for me, more like a dull ache and not a
headache.

Hope this is helpful for you.
Cheers
Faith.

----- Original Message Follows -----
> Hi there
>
> I was wondering if anyone had been advised to try vitamin
> supplements  for this condition.  Like lutein see:
>
http://www.blackmores.com.au/Products/Detail.aspx?ProductId=1950
>
> I have it, was diagnosed about 6 months ago.  I find what
> I would  describe as muscular pain behind the eye at night
> to be the most  annoying.  Does anyone else have that?  I
> put it down to tiredness  (eg waking up to feed the baby
> at night doesn't help!)
>
> Also, does anyone get twitching in the affected eye?  My
> Dr suggested  magnesium.
>
> Does anyone use polarised sunglasses - do these help more
> than normal  glasses?
>
> Also, for the headaches does anyone use the Migrastick?
>
> Many thanks.
>
>
>

I agree with Kath with having some kind of medic alert.
In my case I have an allergy to IV contrast.

Hi there

I was wondering if anyone had been advised to try vitamin supplements
for this condition.  Like lutein see:
http://www.blackmores.com.au/Products/Detail.aspx?ProductId=1950

I have it, was diagnosed about 6 months ago.  I find what I would
describe as muscular pain behind the eye at night to be the most
annoying.  Does anyone else have that?  I put it down to tiredness
(eg waking up to feed the baby at night doesn't help!)

Also, does anyone get twitching in the affected eye?  My Dr suggested
magnesium.

Does anyone use polarised sunglasses - do these help more than normal
glasses?

Also, for the headaches does anyone use the Migrastick?

Many thanks.

--- In adie_syndrome@yahoogroups.com, linja@... wrote:
>
> For an interesting (but not encouraging) article about adie's
syndrome, see
> http://www.medic8.com/neurological-disorders/holmes-adie.htm
>
> On a lighter note, see http://www.oedilf.com/db/Lim.php?Word=Adie's%
20pupil
> for a limerick about adie's pupil.
>

Yes, you were right, the article was interesting but not encouraging,
but seeing the large list of ailments under the "neurological
disorders" and under various other heads too, and realising that I
had only one of these, was sort of satisfactory. This is after quite
a long time that I am responding to something in this group,
otherwise, I don't think much of either this condition or anything
associated with it that reminds me of it. "What can not be cured,
must be endured" works really well for me and I pray that it shall do
the same for other memebers of the group as well. So, I urge you all
to kindly take your Adies in your stride and don't think too much
about it. God has definitely given us more endurance than what is
demanded by this disease. So, look at the brighter side of the
things, even if with your Adies affected eyes only (tongue-in-cheek,
ofcourse). And, remember that only unique people are endowed with
unique things. Wishing you all health and happiness always! Rupesh

--- In adie_syndrome@yahoogroups.com, linja@... wrote:
>
> For an interesting (but not encouraging) article about adie's
syndrome, see
> http://www.medic8.com/neurological-disorders/holmes-adie.htm
>
> On a lighter note, see http://www.oedilf.com/db/Lim.php?Word=Adie's%
20pupil
> for a limerick about adie's pupil.
>


Yes, you were right, the article was interesting but not encouraging,
but seeing the large list of ailments under the "neurological
disorders" and  under various other heads too, and realising that I
had only one of these, was sort of satisfactory. This is after quite
a long time that I am responding to something in this group,
otherwise, I don't think much of either this condition or anything
associated with it that reminds me of it. "What can not be cured,
must be endured" works really well for me and I pray that it shall do
the same for other memebers of the group as well. So, I urge you all
to kindly take your Adies in your stride and don't think too much
about it. God has definitely given us more endurance than what is
demanded by this disease. So, look at the brighter side of the
things, even if with your Adies affected eyes only (tongue-in-cheek,
ofcourse). And, remember that only unique people are endowed with
unique things. Wishing you all health and happiness always! Rupesh

with my tonic pupil - i have noticed recently that the
feeling it gives me in my face (on same side) is like
a trapped nerve, it goes from my right eye down
through the cheek and onto my top lip and is a weird
'buzzing' sensation.
only had it since the tonic pupil so is definitely
linked. makes my face feel paralysed sometimes.
--- cindy mardis <cindy_mardis@...> wrote:

> Very interesting
>
> linja@... wrote:              Roberta mentioned
> that her vision problem seemed like a migraine.
>
>   I have a blog (http://webcroft.blogspot.com) and
> mentioned Adie's some time back. My sitemeter showed
> that people were hitting it while searching for
> Adie's so I looked up some studies and posted a
> summary last weekend. Here it is - note the research
> on migraines.
>
>   <<...Adie's syndrome, aka Holmes-Adie's or tonic
> pupil. I still have it (haven't heard of any real
> cure), but I found some details using Google
> Scholar. First, in NIH's database H.S. Thompson
> writes on the mystery of it's cause: We know where
> the damage is, and which nerves are involved. We
> even know something of how the nerves react after
> the damage is done, but we don't known what causes
> the primary injury... Not all "tonic pupils" are due
> to "Adie's syndrome"; some are due to local injury
> and some to a generalized peripheral neuropathy.
>
> The writer comments on the lack of reflexes in the
> limbs that often accompanies the enlarged pupil. (I
> don't have normal reflexes in my right ankle.) Only
> 10% of patients with Adie's syndrome had completely
> normal muscle stretch reflexes... The muscle stretch
> reflexes in the arms were just as frequently
> imparied as those in the legs, but the degree of
> impairment tended to be more severe in the ankles
> and triceps.
>
> Some other article on Adie's:
>
>    Neurology.org on depressed reflexes due to loss
> of large spindle afferents or reduced effectiveness
> of their monosynaptic connections to motoneurons.
>
>    Is Adie's Pupil Caused by Migraine?
>
>    Chronic cough may be associated with Holmes-Adie
> syndrome
>   By the way, those who have Adie's and also a lack
> of sweating should ask their doctor about (or look
> up) Ross Syndrome.>>
>
>   [end of quote]
>
>   I also have seen mention of enlarged pupil caused
> by a small speck around the eye, adie's caused by
> syphilis, and adie's as a precursor to Sjogren's
> syndrome (which involves dryness of the mouth as so
> on).
>
>   I have also had visual migraines which I mentioned
> on my blog. They came on when I tried oral hormone
> replacement (after menopause).  Suddenly sunlight
> appeared to be flickering and breaking up into
> crystals! This happened with two different brands of
> HRT. Later I tested this reaction under the
> direction of my allergist. I tried estrogen tablets
> - no reaction. After a few weeks, I tried prometrium
> (progesterone). This time I saw floaters in front of
> my eyes, which looked like pieces of thread floating
> around. I quit the progesterone and after a few days
> the problem went away.
>
>   Linda
>   http://webcroft.blogspot.com
>
>
>
>
>
>
>
> ---------------------------------
> Check out the all-new Yahoo! Mail beta - Fire up a
> more powerful email and get things done faster.




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Roberta mentioned that her vision problem seemed like a migraine.

 

I have a blog (http://webcroft.blogspot.com) and mentioned Adie's some time back. My sitemeter showed that people were hitting it while searching for Adie's so I looked up some studies and posted a summary last weekend. Here it is - note the research on migraines.

 

<<...Adie's syndrome, aka Holmes-Adie's or tonic pupil. I still have it (haven't heard of any real cure), but I found some details using Google Scholar. First, in NIH's database H.S. Thompson writes on the mystery of it's cause: We know where the damage is, and which nerves are involved. We even know something of how the nerves react after the damage is done, but we don't known what causes the primary injury... Not all "tonic pupils" are due to "Adie's syndrome"; some are due to local injury and some to a generalized peripheral neuropathy.

The writer comments on the lack of reflexes in the limbs that often accompanies the enlarged pupil. (I don't have normal reflexes in my right ankle.) Only 10% of patients with Adie's syndrome had completely normal muscle stretch reflexes... The muscle stretch reflexes in the arms were just as frequently imparied as those in the legs, but the degree of impairment tended to be more severe in the ankles and triceps.

Some other article on Adie's:

• Neurology.org on depressed reflexes due to loss of large spindle afferents or reduced effectiveness of their monosynaptic connections to motoneurons.
  
• Is Adie's Pupil Caused by Migraine?
  
• Chronic cough may be associated with Holmes-Adie syndrome

By the way, those who have Adie's and also a lack of sweating should ask their doctor about (or look up) Ross Syndrome.>>

 

[end of quote]

 

I also have seen mention of enlarged pupil caused by a small speck around the eye, adie's caused by syphilis, and adie's as a precursor to Sjogren's syndrome (which involves dryness of the mouth as so on).

 

I have also had visual migraines which I mentioned on my blog. They came on when I tried oral hormone replacement (after menopause).  Suddenly sunlight appeared to be flickering and breaking up into crystals! This happened with two different brands of HRT. Later I tested this reaction under the direction of my allergist. I tried estrogen tablets - no reaction. After a few weeks, I tried prometrium (progesterone). This time I saw floaters in front of my eyes, which looked like pieces of thread floating around. I quit the progesterone and after a few days the problem went away.

 

Linda

http://webcroft.blogspot.com

 

Hi Michaela;

I absolutely hate sudden bright light. I never thought my eyes could
hurt like that, so I feel for you. I've had the face pain happen
before. My sight also goes all wonky. It has lasted for up to a
couple of weeks. If I get really tired when this is happening, that
side of my face eventually goes numb, which leads me to believe that
it is some type of nerve pain, or weird migraine. I also sometimes
get leg and arm pain at the same time, with some reflex problems.
Ibuprofen helps if I take it soon enough and have a nap or rest for
awhile.

--- In adie_syndrome@yahoogroups.com, "michaela_rees"
<michaela_rees@...> wrote:
>
> Hi All
> New people have moved next door to me, and decided to put a
security
> light just above the back door of the garrage, it is right next to
my
> garrage door, i went to put some clothes in the dryer which is in
my
> garrage, the light came on, it was a very bright halogen light, i
> could not see where i was going i had eyes shut and hand over eyes,
> the pain in my eye is so bad its never been like this bad before,
all
> the muscles in my cheek and eye brow and eye, it hurts even to
touch
> its been constant for three days now,  i hope there is no damage to
my
> eye from that stronge light, the light is eye level not a good
place
> for a security light, i have spoke to them and he said he will do
> something to change the light.
> Im just wondering if its just the muscles its hurt,its not usually
> like this, i hope it settles down.
> Happy New year to you all, and i hope its a good year for all of us.
> Michaela
>

Hi All
New people have moved next door to me, and decided to put a security
light just above the back door of the garrage, it is right next to my
garrage door, i went to put some clothes in the dryer which is in my
garrage, the light came on, it was a very bright halogen light, i
could not see where i was going i had eyes shut and hand over eyes,
the pain in my eye is so bad its never been like this bad before, all
the muscles in my cheek and eye brow and eye, it hurts even to touch
its been constant for three days now,  i hope there is no damage to my
eye from that stronge light, the light is eye level not a good place
for a security light, i have spoke to them and he said he will do
something to change the light.
Im just wondering if its just the muscles its hurt,its not usually
like this, i hope it settles down.
Happy New year to you all, and i hope its a good year for all of us.
Michaela

Hi Cindy,

 

I have also observed this , i think also have the answer , when you close your eyes they focus on the inner eyelid causing the pupil to close down ,this improves the focus and takes away the blur .

Try this silly test !! focus both eyes on your nose , yes go cross eyed ! this will cause the defective pupil to close ( will also feel some uncomfortable feeling in your eye , maybe a little pain , look in the mirror and you will see the pupil size is almost the same , after a short while it will increase in size blurring your vision , I actually practice this to excersise the pupil muscles to keep them healthy , My opinion only but works for me

 

Try this , put a pinhole in a piece of paper , look through it with the defective eye , you can see very well , maybe can even read !! , some while ago i had some special contact lenses made with a predetermined pupil size ( Average for normal working ) I could see much better but had a reaction to the lenses so didnt continue ,

 

Hope it answers your question

 

Happy Xmas

 

Bob

----- Original Message ----
From: Trish <qcgirl63@yahoo.com>
To: adie_syndrome@yahoogroups.com
Sent: Thursday, 14 December, 2006 5:53:30 AM
Subject: [adie_syndrome] Re: Vision problems

Yep sure do ... just one of the lovely perks.

Trish ...
>
> Hello,
>
> My vision seems to get really blurry in the evening.
>
> Cindy
>
> ally_456789 <ally585@... > wrote:
> Hi, has anyone else having issues with their vision in
the affected
> eye? My vision is very blurred and I have to close the eye to read.
It
> also takes a very long time to focus on an object that is close. My
> other eye has perfect vision...Just wondering if anyone has been
> similarily affected.
>
>
>
>
>
>
> ------------ --------- --------- ---
> Everyone is raving about the all-new Yahoo! Mail beta.
>

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Bob,
Have you ever tried pinhole glasses?

Hi Pieter
Thankyou for info, i will see my doctor, it will be next Friday now
before i can see him, so i will ask him for a prescription for the
same dose that your on.
I will be in touch and let you know how i get on, thanks again, you
ahave given me a little bit of hope back.
Hope you have a peaceful and enjoyable Christmas and the same to the
rest of the group.
Kind regards Michaela

just for sure:

1/16th = 0.0625%
1/8th  = 0.1250%


--- In adie_syndrome@yahoogroups.com, "pieterb12" <pieterb12@...> wrote:
>
> Hi Michaela,
>
> my eyedrops bottle says:
> -SOL BENZALK ET AC BOR       60 ML    (that's only solution fluids and
> can differ)
> -PILOCARPINI HYDROCHLORIDUM  37.5 MG
>
> the pilocarpine is the most important, as it is the stuff that
> constricts your pupil... this ammount is the exact dosis for one
> bottle, but as a percentage, it is: 1/16% so "one sixteenth"...
> This one works perfectly for me, but as i said earlier, you could also
> try 1/8th%, but that's too strong for me...try it out, it helped me
> and since it seems a logical fysical thing to me, like a camera with
> the lens-opening to big, there's to much light and the picture gets
> too bright...same with the eye, so I assume it will work for you...
> The first days it's a bit a strange feeling, because you and your eye
> are not used to external forces, but later on the feeling gets natural
> and you don't notice a thing when you administer the drops, except
> that after 15 minutes your pupil gets small en stays for say two
> hours... you have to try for your self...
> Good luck!
> Pieter
>
> PS If nescessary I can ask my pharmacist for extra info on the recipe
>
>
> --- In adie_syndrome@yahoogroups.com, "michaela_rees"
> <michaela_rees@> wrote:
> >
> > Hi Peiter
> > Could you send me the solution ingredients, i could ask my doctor if
> > he could give me a prescription to try it, thankyou.
> > I understand what you say, i am trying to find ways to help, but
> > things are not good, i can't go out and have fun and im struggling
> > even at home with light turned right down, the pain never stops, it
> > eases in dim lighting but starts again when lighting changes or gos a
> > little brighter, it gets so bad my whole body gets tence, i just want
> > something to help control the pain so i can be more normal and do
> > things without having constant headaches.
> > Everybody has it differantly and most can have a fairly normal life,
> > like all illness some have it worse than others, the eye doctor
said i
> > had it to the exstreem and did not know why it is so bad, they don't
> > know much about this problem, its probably my body make up or a very
> > low pain threshold, but to me its severe and disabling my life, and i
> > need to find something to help so i can get out and cope with going
> > places and at home.
> > thanks for the infomation i will look into this again.
> > Regard Michaela
> >
>