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.
>