Introduction from Minnesota, USA

[Carol]

I have had Scintillating Scotoma for about 20 years, and I'm almost 62
years old. I can't remember for sure when it started. It worried me a
little, but not enough to go to a doctor. When I had a cluster of
them - about 3 in a day is a cluster for me - I told a friend about
what it looked/felt like, and she told another friend, and the two of
them were sure I had a detached retina or something and badgered me
until I called an optometrist after hours. I managed to reach the
wife of an almost-retired doctor who was straightening up in the
office. I told her about it, and she agreed with my friends that her
husband should see me. Aren't small towns great? He met with me at
his office, along with my two friends (who were curious and didn't
trust me to follow through.) After he ruled out anything he could see
with blinding lights, he asked me if it looked like strobing lights
and starts on one side or the other, on the inside of that "eye", and
grows out in a "C" that gets larger until it moves off my periphery
and goes away. My mouth fell open. Exactly! Then he told me what it
was. He said it really was a migraine, probably caused by a blood
vessel in the back of my brain in the optical center that contracts,
just like the ones that bring on a headache. He said I'm just one of
the lucky ones who don't get the headache.

After reading all the posts - what a wealth of information! - I
realize my flashing lights and attending blind spots are really minor
compared to some. I work for an answering service from home, 4 10-
hour shifts, so I'm in front of the computer 10 hours at a time with
minor breaks, but that doesn't seem to make a difference. At first I
realize I'm getting a blank spot in my vision, and it usually feels
like it's in one eye or the other. In a couple of minutes I can see a
little flashing light next to the blank spot, and eventually it forms
a circle, then a C if it's on the left and a backwards C if it's on
the right, and it continues to get bigger until it goes off my
periphery and out of sight. It's like jagged, multi-colored strobing
lights.

Luckily for me, the blank spot/spots are small enough I can usually
see around them. I usually wouldn't even have to quit working or even
reading a book, if the print is not too small. I can't write while
I'm having one, it's too distracting, and I've found if I push it,
I'll end up with a relatively minor tension headache that I can avoid
if I just don't push it. Mine only last about 10 to 15 minutes, so
it's really not to hard to wait it out. I just take a coffee break
and enjoy the show.

I haven't logged my episodes, but it might be a good idea if I did. I
have also found I have acid reflux, mostly from taking lots of
ibuprofen for about 20 years. I had gone to the doctor several times
within one year with sinus infections, ear infections, sore throats,
cough and laryngitis, and when it was clearly chronic, she told me
some women have "silent" acid reflux, and if the stomach acid comes up
even 4 inches above my stomach, it can cause all the problems I was
having. Since I talk for a living, the coughing and laryngitis were a
real problem. I bring this up for a couple of reasons. One is that
some people have mentioned taking naproxen or ibuprofen to deal with
the SS, and I just want to warn against the dangers of NSAIDs and
stomachs. The NSAIDs decrease inflammation by interfering with some
of the same prostaglandins that help keep the stomach lining healthy.
So if you do use these meds, it's a good idea to keep it short-term,
and take them with water and food. The other reason I mention it is
because a couple of people have mentioned a possible tie between SS
and the ingestion of gluten. This is one of the things my doctor
advised I might try eliminating, because a sensitivity to gluten is
more common than we think, and because she thinks sometimes it can be
a contributing factor in GERD. Now that I've read the past posts, I'm
wondering if a sensitivity to gluten might contribute to both, and I
might have to get on the band wagon. <sigh>

I'm really thrilled to find this group and look forward to interacting
with all of you. Thank you, Edith, for starting and maintaining this
group. Filtering out all the spam for us has got to be a lot of
work. Also, someone mentioned an album of yours, so I had to
investigate. I found your website and have listened to samples of
your songs. Where have you been all my life! I'm seriously stocking
up on my iPhone next payday.