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Oh my god, and you are just now able to get into your doctor? That's
just not right. I will say a prayer tonight that your pain will go
away. And talk to the doc about a med that can help maybe suggest
Topamax and see what the doc says. Worked for me, maybe it'll work for
you...I'm so sorry you've been suffering like that...

does anybody have another group to talk to out there? This one is looks
pretty defunk...

Wow, I'm not quite that bad although i do have a big problem with
movemant. I can't watch things go by me quickly, or come at me fast.
I can't watch trains go past anymore, the cars I mean. Heavy traffic
gives me nausea. I have a problem with extreme light, sunlight
bothers me and I wear a special sunglass that bends the sunlight
differently than normal uv. I can't think of the name when I do I'll
let you know. Fishermen wear them to see under the water, they're
pretty neat actually. And come in some nice styles. Saves me some
killer headaches. Um...I also have problem with flashing lights,
can't do them, video games are out. Some types of movies I have a
problem watching if they go from light to dark alot or if they have
alot of flashing in them... I have to dim the screen on my
computer...it was suggested I get a special filter screen but they
are expensive and i don't spend that much time on it anyhow to make
it worth my while to spend the money. Oh yeah, it's called a
polarized lense...the sunglasses. Look for those if you have problems
with sun or driving glare. They are the best. I also have a big
problem driving at night with the car glare. Haven't quite figured
out a solution to that one yet except to avoid it as much as
possible. LOL. Bending over for long periods of time makes me dizzy
so I try to avoid doing that and looking upwards does to which is
something you do alot when you are short like me. But I've gotten
used to the feelings i get and it doesn't bother me too much anymore.
I usually get dizzy for a minute or two and snap out of it and get
back to business. Used to be pretty scary...

Luckily they haven't in the past 2 years. my job knows what is going on
and they have been pretty supportive. But the Topamax has everthing
pretty much under control at the moment so I've been lucky there too.
Do you have any problems working?

I wasn't told that one. But to take them in moderation of course. I was
hooked on the Advil, so I def have to stay away from that one. But as
far as taking for aches and pains on occasion I was told that was okay.
Funny how all docs don't agree huh?

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

From: Patricia BEERS

To: neurovascular@yahoogroups.com

Sent: Monday, February 26, 2007 7:57 PM

Subject: RE: [neurovascular] Re: benign angiomas

My blood pressure was taken at the dentist's office a few years ago when I was still terrified of the dentist.  I was shocked to find out that my blood pressure was fine even then. 

I have a question about anicoagulants.  My doc said don't take them.  I know that aspirin is an anticoagulant and that Excedrine has Aspirin.  Are there any other over the counter meds that I should avoid? 

---

From: "Vicky" <vmcnierney8743@charter.net>
Reply-To: neurovascular@yahoogroups.com
To: neurovascular@yahoogroups.com
Subject: [neurovascular] Re: benign angiomas
Date: Mon, 26 Feb 2007 23:57:52 -0000

yeah stress has alot to do with my symptoms.Of course stress raises
your blood pressure also so that's probably what does it...maybe?

Ya know? I'm not sure? I usually just check with the pharmacist and
tell him what I'm not supposed to take and ask if it's okay and they
are usually very helpful. They will also tell me if I'm apt to have an
interaction with my other med. Although we live in a small city so my
pharmacist knows me now which helps. I son't like to take anything that
mat cause dizziness and that rules out a wide aray of meds. Especially
cold medications. So I suffer colds through. Anything with
Benzodiazopines I stay away from. And like you the blood thinners as
they make the blood flow through the brain too fast. It can cause the
blood to hit those vein walls too hard as my neuro doc says. Better
safe than sorry. And my BP tends to run on the low side so that is good
too. Although I have had a few really high ones. The contrast for MRI
will send me over the edge for a short period of time so I have to be
watched. But on a normal basis I do okay.

yeah stress has alot to do with my symptoms.Of course stress raises
your blood pressure also so that's probably what does it...maybe?

the benign and the angiomas are the same I think but thats okay...it's
nice to see some one actually posting on this site again...anyhow I've
never had a bleed(thank god) and I haven't experienced the paralysis.
It must have been very frighteneing. The vertigo was scary enough. I
was "off" my feet for about 4 weeks the first time and 3 weeks the
second before I went on the med. I am pretty nervous when my neuro doc
talks about cutting my med back. All I can think of is the vertigo
coming back. And the headaches were terrible. I was actually addicted
to advil for years and was bringing on headaches by taking it. I was
given Indomethacin which is an antiinflammatory med to take for
headaches along with the Topamax until we could get the dosages right.
I don't have to use it anymore. No one really took the headaches
seriosly and didn't look into the reason why I was having them...I got
my reason when the second bout of vertigo started. After many tests.
Thanks for posting...

Amazing..I have the same thing on the right ventricle deep in white
matter with vertigo and paresthesia on opposite side. I had a slight
bleed almost 10 years ago. I am glad that now after 10 years I've
found others with a similiar issue. The neurosurgeons weren't much
impressed..this is more common than I thought. Unfortunately, when I
am tired and stressed, the symptoms can be very scary. The bleed
debilitated me for days (I was only in my 20s, and I was very dizzy
with poor communication..unable to move my leg on left side after
having a work meeting). I definitely take time to get MRI yearly.

--- In neurovascular@yahoogroups.com, "kimchoiniere"
<kimchoiniere@...> wrote:
>
> I have the same thing at left lateral ventricle; I have bouts of
> extreme vertigo and paresthesia on opposite side (numbness). I
> definitely have spells of extreme dizziness and balance issues that
> I've had since early 20s; I saw two neurosurgeons that told me to
> live with these symptoms (said it could be caused by large
angioma);
> mine cannot be operated on no matter what (it is deep in white
> matter). It is not cavernous and has not changed for 11 years (11
> years ago I had a slight bleed; It was similiar to a small stroke;
> although this is very rare with angiomas that are not cavernous). I
> have an MRI every year. Good luck with symptoms. On dizzy days, I
try
> not to drive too much; I rest.
>
>
>
> --- In neurovascular@yahoogroups.com, "mamapoulette"
> <vmcnierney8743@> wrote:
> >
> > I was diagnosed with a venous angioma in the front left temporal
> lobe
> > of my brain about three years ago now. Doctors in my area have
told
> me
> > that it probably wouldn't have been found as these things don't
> have
> > symptoms as a rule but mine did. It's not cavernous at this point
> and
> > my neurologist monitors it with yearly MRIs but after years of
> > intolerable headaches which were written off as migrains I came
> down
> > with a month long bout of vertigo with no cure, followed by
another
> one
> > three months later. It took many months of playing with the right
> meds
> > and many many tests to rule out every known thing known to cause
> > balance failure the doctors could come up with and the doctors
are
> > still not ready to say that this unusual vein pattern in my head
> could
> > have caused it. To this day if I try to back off the medication
> which
> > is now 100mg of Topamax (which thankfully controls the headaches
> and
> > keeps me on my feet upright)I will still lose my balance and spin
> like
> > a top. Does anyone else out there have a similar story? Because
> from
> > what I've learned the neurologists really don't know too much
about
> > this type of thing except that it's better off left alone unless
it
> > becomes cavernous.And then a person pretty much is left to feel
as
> > though they have a time bomb ticking away inside their head.
> >
>

I am so glad that others have ahd the same experiences. I saw two
neurosurgeons re: surgery due to a small bleed and symptoms. I had a
venous angioma (it was not diagnosed as a cavernous angioma). I had one
day where I lost all sensation in one leg during a meeting at work. The
bleed was slight but I had trouble communicating for a few days, and I
feel down a flight  of stairs. It has been almost ten years since then
with no bleeds (mine is inoperable due to its location, and the angioma
has not changed. I deal with the symptoms by trying to decrease stress
and resting. My doctors recommended an MRI at least every two years
(every year if possible). It is important to follow.





-- In neurovascular@yahoogroups.com, "Vicky" <vmcnierney8743@...> wrote:
>
> My neuro doc put me on Topamax which has done wonders for my migrain
> headaches. We had to adjust the dosages to get me to the right one
and
> it also helped me get back on my feet as far as the vertigo was
> concerned as mine was severe. I still have a little problem with
being
> off balance occasionally and I can't put my head back very far as
that
> throws me backwards but for the most part it does pretty good.
>

My neuro doc put me on Topamax which has done wonders for my migrain
headaches. We had to adjust the dosages to get me to the right one and
it also helped me get back on my feet as far as the vertigo was
concerned as mine was severe. I still have a little problem with being
off balance occasionally and I can't put my head back very far as that
throws me backwards but for the most part it does pretty good.

See what I mean? The old school Neurologists aren't willing to admit
that angiomas are responsible for your symptoms even though they can's
scientifically or medically determine what else may be causing them.