there has to be soemthing to kill these headaches. im gunna go insane
before im 30 for crying out loud!
--- In hydrocephalus@yahoogroups.com, "elana_schwartz"
<elana_schwartz@...> wrote:
>
> Thanks Jenny for the suggestion. I've actually already tried
Topomax
> but stopped it after a year - it made me too tired to the point
that i
> felt "doopey" which is one of the side effects. At that time it was
> difficult for me - as i was a full-time grad student then and i
would
> have a hard time concentrating in class. Now, my neurologist has me
> trying neurontin - which from what i understand can also make you
> tired but not nearly as bad as the Topomax.
>
> Elana
>
> --- In hydrocephalus@yahoogroups.com, "malachitemomof2"
> <malachitemomof2@> wrote:
> >
> > --- In hydrocephalus@yahoogroups.com, "elana_schwartz"
> > <elana_schwartz@> wrote:
> > >
> > > Diana & Laura,
> > >
> > > I have been to my neurosurgeon (last appointment was last
August)
> > and
> > > he confirmed that it is difficult for me to tell when i am
getting
> > > migraines and when I'm having a shunt-related headache - until
it
> > gets
> > > to a certain point then i know it's malfunctioning/clogged.
This is
> > > why he sent me to the neurologist. I am just frustrated because
i'm
> > > still in pain and my last appointment with the neurologist 2
months
> > > ago he said that it was chronic headaches and while the shunt is
> > > working he does believe it's connected to the hydro (but that
you
> > cant
> > > always tweak a shunt unless it's really a big problem). My
last MRI
> > > which i took last month seemed ok ... I just get concerned
because
> > > I've had CT scans and shunt series which show everything is
fine
> > when
> > > it's been clogged or malfunctioned and my neurosurgeon knew my
scans
> > > can seem fine and sent me for another test which proved it
wasn't
> > > working. I have to have faith that an MRI will show a problem
since
> > > it shows a clearer picture.
> > > Fortunately, my neurologist works with my neurosurgeon --
that's
> > why
> > > I go to him because the nsg recommended him and i know the 2
> > consult.
> > > And, he seems knowledgeable with hydrocephalus
> > > What is ICP monitoring - I've never had that nor has it ever
been
> > > mentioned to me by either doctor. At the moment i'm still
searching
> > > for a good general practitioner that i can keep as my internist
but
> > > have yet to find and someone who is closer to where i work.
> > >
> > > Elana
> > >
> > >
> > > --- In hydrocephalus@yahoogroups.com, "Laura Monahan"
<lmripple@>
> > > wrote:
> > > >
> > > > hi Diana,
> > > >
> > > > That is what my ns told me that i was having migraines. But
when i
> > > had an icp motoring study my icp went up to 60 at times and
while
> > > laying flat it raised to 20. and sometimes spiked to 40 in
different
> > > positions like laying on my shunted side. but my ns says that
that
> > was
> > > normal and did not do a revision. I Keep calling his office and
> > > telling him that i am having problems and he says that they are
> > > migraines and to go and see your neurologist. i do not think
after
> > > that icp test that they are migraines. and he has no notes of
that
> > > ttest to send to my family practice doctor to get a second
opinion.
> > > except normal test no opening pressure nothing.
> > > >
> > > > Laura
> > > > ----- Original Message -----
> > > > From: Diana Pozzi
> > > > To: hydrocephalus@yahoogroups.com
> > > > Sent: Tuesday, May 27, 2008 4:58 PM
> > > > Subject: Re: [hydrocephalus] Re: Migranes! Need to Vent!
> > > >
> > > >
> > > > Elana:
> > > >
> > > > First, I would make sure that these are migranes. Quite
often
> > > members of the support group I belong to have had hydro related
> > > headaches misdiagnosed as migranes. Sometimes the symptoms can
be
> > > similiar--light & hearing sensitivity, nautiousness, etc. I've
also
> > > had that happen, but I don't have migranes, so I knew that
wasn't
> > what
> > > it was. But I've had medical professionals refer to them as
> > migranes
> > > when they should know better.
> > > >
> > > > You might also want to find a neurologist who specializes in
> > > migranes. My former neurologist had a lot of clients who DID
have
> > > severe migranes. But I was fortunate, he knew the difference.
> > > >
> > > > Hydropr61
> > > >
> > > > elana_schwartz <elana_schwartz@> wrote:
> > > > Thanks Joel for your email. Yes, they are very annoying
(and
> > painful
> > > > at times) yet I have continued to go about my life. I've
> > always had
> > > > headaches somewhat - and I'm not sure if I've just paid
more
> > > attention
> > > > to them since my last revision 2 years ago (I had 2
within a
> > 3 week
> > > > span) or if they've gotten worse in terms of migraine
> > symptoms. The
> > > > last time I was at the neurologist he said that i was
> > suffering from
> > > > chronic headaches with the key of trying to make me more
> > > comfortable -
> > > > which some days I don't find easy.
> > > > I have had a total of 7 revisions since my shunt was first
> > > placed when
> > > > I was 3 weeks old... I have had 1 infection - which was
why of
> > > all my
> > > > revisions i had 4 within a year and a half span. Still,
I've
> > managed
> > > > to graduate college, graduate school and now work full
time.
> > > >
> > > > Elana
> > > >
> > > > --- In hydrocephalus@yahoogroups.com, "Joel Hug" <joel@>
> > wrote:
> > > > >
> > > > > Elana,
> > > > >
> > > > > I sympathize with your migraines. I had one that lasted
for
> > > almost 4
> > > > years when God
> > > > > healed them one night almost 3 years ago. Without
knowing
> > your
> > > > beliefs, can I pray for
> > > > > your healing? I have congenital hydro and went through
3
> > surgeries
> > > > during a 2 year period
> > > > > while I had the migraines.
> > > > >
> > > > > Joel
> > > > >
> > > > > --- In hydrocephalus@yahoogroups.com, "elana_schwartz"
> > > > <elana_schwartz@> wrote:
> > > > > >
> > > > > > Sorry guys but i decided for once I need to vent ....
> > > > > >
> > > > > > I've had such a hard 3 weeks with really bad
headaches -
> > > where I've
> > > > > > had periods at work where I've had a hard time
> > > concentrating. After
> > > > > > seeing my neurologist yesterday he decided to
increase the
> > > Neurontin i
> > > > > > am taking as a "preventative" medication to try and
cut
> > the
> > > cycle of
> > > > > > getting these really bad headaches on a daily basis.
These
> > > headaches
> > > > > > had gotten so bad that i left work 2 hours early one
day
> > and
> > > took off
> > > > > > another day. Luckily, they are really understanding
at my
> > > new job and
> > > > > > my chief of staff actually know a bit about
hydrocephalus
> > > and shunts
> > > > > > when i told her.
> > > > > >
> > > > > > My appointment at the neurologist yesterday, made me
feel
> > a
> > > little
> > > > > > better in that he said that my shunt seems to me
working
> > and
> > > the key
> > > > > > is to try and minimize my headache pain... but he
does
> > feel
> > > that the
> > > > > > chronic headaches are related to the hydrocephalus
but
> > you don't
> > > > > > always want to play with the shunt he said (unless
it's
> > > clogged or
> > > > > > malfunctioning). In the meantime, we've increased my
> > > headache pills
> > > > > > as i said before and i go back for a follow up in 6
weeks
> > > and have to
> > > > > > get a dreaded MRI again beforehand (just to make sure
that
> > > the fluid
> > > > > > in my neck is no longer congested).
> > > > > >
> > > > > > Still i hate the headaches and they have kinda put a
> > damper
> > > on my mood
> > > > > > and willingness to be as active (when these headache
hit)
> > > > > >
> > > > > > Thanks for the vent!
> > > > > > Elana
> > > > > >
> > > > >
> > > >
> > >
> > Elana, ask your neuro about Topamax. My son takes it for
headaches
> > and it helps a lot. There are a lot of side effects...so I have
been
> > told....my son has never had any side effects (he is 1.5 yrs old
> > though) I hope that you get to feeling better. Jenny in IL
> >
>