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Re: Is what I'm experiencing an Ocular Migraine - I'm quite worried!

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Re: Is what I'm experiencing an Ocular Migraine - I'm quite worried!

Maestro7725 Jan 2007 20:43
A reply to me from the alt.support.headaches.migraine newsgroup:

**************
Hi,
-
I'm intrigued by your post.
-
Don't wait 3 weeks if you suspect stroke:
================
http://www.StrokeAssociation.org/
-
Phone: 1-888-4STROKE
-
Maybe aneurysm?  That is before it goes pop!  I have an info stash to
Yahoo! concerning stroke or hemorrhage.  Email me if you want the url.
-
I think I have experienced migraines a few times over the years, not
knowing they were migraines.  I called them "heat" headaches and I was
near the realm of heat exhaustion every time.  I never realzed they
could be migraine.  They really hurt though.  During one episode I was
so incapicitated on the job putting in below grade swimming pools I
was
fired on the spot!  I couldn't do anything and these guys had no
sympathy what so ever.
-
I was a distance runner since high school to age 50.  One summer day,
1978 or so, doing a 4 mile easy does it run, I overdid it in the heat.
Later that night my right vision got occluded, into tunnel vision,
then
bad headache.  That was 1st visual incident.
-
April 2001 and many 10K races and half marathon races later I got
visual
experience #2.  I was out training for a 10K race, running the course
in
40 degree F. weather.  I was overdressed so that set me up for heat
exhaustion even in relatively cool temps.  At mile 4, my vision was
like
looking backwards through a 3D fresnel lens image.  At mile 6, I was
into a very bad headache.  Runners tend to ignore pain, it's a Zen
thing.  I didn't stop.  A long story, short:  I walked into ER and
passed out.  When I came around into in/out consciousness I was pitch
black blind.  I vomitted while on the gurney.  I remained blind for 18
hours.  That earned me 4 days in the hospital, starting out in an
intensive care unit, and a ton of tests mostly cardiac.  Conclusion?
Nobody could tell me what or why as to what happened except I blew out
my serum potassium right down to zero.  A couple of RN's that were
also
runners said I probably got into heat exhaustion.  Docs called it
ALTERED STATES.  I called it a really surreal place to be and I
realized
what we take as being normal is just a very fine balancing act into
this
surreal realm.  While I was there in pitch black darkness, it was so
relaxing, no fear existed.  They called in a neurologist to ask me
questions.  I heard her talking, I knew what I wanted to say, yet
couldn't speak.  Listening to her was like she was at the end of a
tunnel so far away.  I asked the cardiologist if without hospital
would
I have survived this?  He said doubtful.  I think I was pretty close
to
the edge.  Wife said I had clear bags of solution IV  in each arm to
get
rehydrated.  18 hours later my vision returned.
-
I returned to running but after sunset.
-
December that same year I did brain hemorrhage in my left cerrebelum,
not related to doing exercise.  Something I was probably born with,
popped!  No warning signs.
-
Migraine problems since.  What an ordeal learning to walk again.
-
September 2006 my 1st visual aura migraine with the brilliant white,
flashing, wwwwwwww's.  Everything went blurry.  I couldn't see to dial
the phone.  I was on Toprol XL.  Two days of horrible pain curled up
in
my recliner.
-
My GP put me on Fioricet.  He had me do followup with my eye MD.  I'm
sorry, I don't know the eye exam jargon to tell you exactly the tests
done.  Some kind of computerized retina exam like looking into a fish
bowl and they take photos of the eyes.  Another test to check field of
vision.  He dilated my eyes with drops, did a look/see with a very
bright light.  My eyes were OK.  But, now I gotta' be checked out
every
6 months for my eyes.  Next time a more advance field of vision test
will be done.  I do know I now get times when things go blurry and all
I
can do is give up and go to sleep.  I'm OK when I awake.   I take
25,000
units beta carotene as supplement, just one capsule when I get blurry
and it helps.  I did this on my own, knowing that WW II, B-17 pilots
suffered vision problems on long missions and big doses of vitamin-A
were prescribed for them.
-
All I'm giving you is similar experience.  I'm not a doctor.  I'm on a
journey like you are and I take it day by day and reailze most with
brain bleed episode, die or are really very messed up.  My experience
is
just a minor inconvenience in comparrison to most stroke surviors.  Go
to a stroke recovery group up close and personal to see it.  
-
I asked GOD in ICU to let me survive the bleed and not leave my wife a
widow.  I told Him I'd take whatever He dishes out and I'd try not to
complain about it too much.  You gotta' learn to adapt and go with the
flow.  
-
Out of 6 different neurological practices only one neurologist was
migraine qualified as his exclusive practice and he was also a
psychiatrist.  He did EEG and carotid ultrasound, but I found him very
close minded as Topomax was all he was interested in me taking and not
willing to talk compromise as alternative therapy.
-
I take Toprol XL 50 mg (baby dose) daily to prevent them, or at least
extend my activity range. Fioricet is for the pain when I get them.  I
had to really cut back my once very active life.  Currently I walk a
mile at 7 AM here in NY and 2 miles at 5 PM with my wife at my side.
That probably still sounds more active than most do.  Active to me is
walking 7 miles back to Mt. Marcy in the Adirondacks and back before
sunset.  I'll never get that back.
-
Damndest thing, what a chore in the hospital filling out the daily
menu.
I lost the ability for quite awhile to make decisions.  The other
thing,
visual, like to WalMarts, shelves of multicolored boxes really throw
me
to find a particular item.  I never told a doctor, I just live with
it.
I drive my car OK, but if I ever get aura driving, I'm heading towards
the sholuder quickly.  I make sure I always have my cell phone on me
and
I will dial quickly 911 before I blurr out.  
-
I have a rather sour disposition towards most doctors.  There are a
couple people on this board I'm pretty sure are MD's, good natured,
well
meaning pros.  I liken it to finding a really good car mechanic, you
got
to just keep looking...
*********

<maes_REMOVE-THIS_tro77@rogers.com> wrote:

>Hello all,
>
[quoted text clipped - 58 lines]
>maes_REMOVE-THIS_tro77@rogers.com
>Obviously remove the portion so the name reads maestro77.

Maestro7723 Jan 2007 21:31
Hello all,

I'm experiencing some frightening symptons.  Went to the ER one night
- they referred me to an opthamologist who was stumped - and he
referred me to a specialist neural opthamologist who was stumped - and
he has now referred me to a neurologist at the Stroke Prevention
Clinic.  I'm currently awaiting that appointment.

There are quite a few details, but I'll present the typical episode I
experience.

I have never been an experiencer of migraines.  Out of the blue I'll
now  occasionally bend over to pick something up, and I'll feel a bit
of a head rush sensation.  I'll feel pressure in my eyes and get sort
of star bursts in my left eye (always the left)  Within a few moments,
my vision in that eye will go completely grey (as though looking
through a curtain - totally blind except for perhaps a brighter area
if I look directly at a strong light source.  Within 5-15 minutes,
vision slowly returns.  Initially in patchy grey scale, and eventually
colours come back and all is totally normal.  No pain through any of
this.  Left with a feeling of pressume in the eye that goes away in an
hour or two.

There are a few variations.  Sometimes I have a mild and pressure-like
headache after.  A couple of times an episode has been initiated by
adrenaline rush when I suddenly worry about something.  A few times
I've been able to straighten up or calm down quickly, and the event
doesn't progress beyond just the star bursts for a few minutes.  If
I'm helping the kids and bent over a lot....sometimes I can feel a bit
of a ache developing in my head such that I feel I might have an
episode.....and then if I've not stopped bending over, boom....I'll go
blind a few bend overs later.

Used to happen perhaps once a month beginning maybe 8 months ago.  Now
I'm having some sort of event at least every 2 weeks, and have
frequent headaches resistant to Tylenol.

Have had a blood test, a carotid artery ultrasound, and an orbit
ultrasound.  All normal.  Am otherwise healthy and a 39 year old male.

The neural opthamologis said ocular migraines were his most common
referral and this wasn't it.  Initially he said because 'bending over'
didn't make sense as an initiator.  But when I had episodes without
bending over, he changed to say that an ocular migraine's visual auro
wouldn't resolve in <20 minutes - and it can be as short as 5 miinutes
for me.

Spontaneously going blind is obviously quite terrifying and I'm very
concerned about my health and if all this could be a tumour or lead up
to a stroke.  Am doing all I can through the health system.....but 3
weeks was the quickest the Stroke Prevention Clinic could schedule me.

I'd REALLY appreciate any input from people if you think this may in
fact be an ocular migraine.  And IN PARTICLUAR I'd love any comment if
people have heard of ocular migraine's being initiated by bending
over!!

Thanks so much for any input!

Please reply to the group, or if you like my email address:
maes_REMOVE-THIS_tro77@rogers.com
Obviously remove the portion so the name reads maestro77.

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