lucygleeson1uk,
Curious, what is gone? The sinus problem or the adie pupil? Mine has
gotten smaller over the years but still remains slow to react.
ms
----- Original Message -----
From: "lucygleeson1uk" <lucygleeson1uk@...>
To: <adie_syndrome@yahoogroups.com>
Sent: Thursday, July 13, 2006 4:44 AM
Subject: [adie_syndrome] Re: Alternative Treatments


> hi roberta
> thankyou for sharing your experiences, very interesting and i couldn't
> agree more about
> using these drops when doctors don't seem to know much about adies. i too
> have found
> alternative treatment much more effective, i had awful sinus problems
> which was definitely
> interlinked with the adies but thanks to some remedies it's now gone
> after 6 or 7 years!
> --- In adie_syndrome@yahoogroups.com, "Roberta" <bobjo16@...> wrote:
>>
>> Hi all! I've been reading the site for awhile now and thought I
>> might share a recent experience. I was diagnosed with Adie's about a
>> year and a half ago now. I have always had sluggish reflexes,
>> migraines, and there was even some talk of temporal lobe epilepsy at
>> one point (which was never proven). Then I woke one morning with my
>> right pupil not reactive and feeling quite woozy. Upon testing, my
>> reflexes were gone as well.
>>
>> The neuro-opthamologist who diagnosed me knew very little about
>> Adie's and wasn't quite sure what to tell me. He did mention that
>> there were medications and drops to be tried, but sunglasses were the
>> best solution. So, I started wearing the glasses and the wooziness
>> improved. I've found that I have incredible night vision, with some
>> depth perception problems. I have been getting headaches throughout
>> and pain in my eyes. I would get sudden attacks of wooziness,
>> headache, eye pain and distorted sight, which I would have to just
>> sleep off.
>>
>> Last month I got one of these attacks and it wouldn't go away, so saw
>> one of my dr's colleagues that I had never met (my doctor was out of
>> town). He had one other patient with Adies in his 50 year career, and
>> had done research on the subject. He was concerned that I seemed to
>> have lost some of my sight in the last 8 months. He consulted with a
>> neuro-opthamologist, who commented that it was just Adie's and I
>> should take some advil (does anyone else just want to drop kick some
>> doctors?). The doctor I was seeing had some other ideas, though, and
>> these are what I wanted to share.
>>
>> His first comment was that he felt that Adie's Tonic is caused by
>> migraines that are left untreated. As a child, I had migraines that
>> did not hurt and he felt that I probably still do, but have just
>> learned to ignore them. He gave some recommendations on how to treat
>> that and sent me directly to an optometrist that he knew was familiar
>> with Adie's.
>>
>> This fellow prescribed glasses to correct my sight, some of which I
>> had lost (we have no idea why) which are also tinted and treated to
>> protect my eyes. These are very similar, apparently, to glasses worn
>> by people with Irlen's Syndrome, and it has made all the difference.
>> I can wear lighter glasses, with a sunglass attachment for outside.
>> My sight, obviously, has improved, and my perception of colour and
>> shadow is greatly improved. I really recommend trying this course of
>> treatment. I'm not sure exactly what they did to the lenses, but they
>> are a "rose/magenta" tint with a bunch of adjustments and had to be
>> special ordered in (I do live in a large urban area, so this was
>> unusual).
>>
>> For myself, I don't feel that the drops or medications are a healthy
>> way to treat this disorder, and I don't agree with doctors
>> prescribing these when they are not experienced with the disorder.
>> I've found that the advil migraine formual works for my headaches, if
>> I take it as soon as one is coming on. I also keep the lighting in my
>> home dim and don't watch tv or work on a computer often in the
>> evenings. I do work on a computer in a fluorescent lit office all day
>> quite successfully. Since getting the new glasses, I have been
>> enjoying sailing and other outdoor activities more, something that I
>> really couldn't do last summer, because of the glare and sunshine. I
>> wear hats when it gets really sunny out. I also find the meditation
>> helps (probably because I'm resting).
>>
>> I hope some of this information helps someone out there. I did get
>> all the doom and gloom stories when I was first diagnosed, I am
>> losing sight for some reason, I often still have eye discomfort (and
>> probably always will) and my balance is definitely not what it used
>> to be, but I'm optimistic. My son has Asperger's Syndrome (an
>> autistic disorder) and I take my lead from him. He is the bravest,
>> strongest person I know and my discomfort seems small in comparison.
>> Hang in there gang! If we keep educating the doctors out there, there
>> are bound to better treatments coming along.
>>
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