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opps, i think my comment came out wrong. i most certainly don't like ptc. i think the name living with PTC / IH is a good name for the new site.

Brandie Leehy <brandieleehy@yahoo.com> wrote:

Yes we have to learn to live with it, but I don't think ANYONE likes it at all !!!!!

Nicole Wargo <black_panther_nikky@yahoo.com> wrote:

I LIKE LIVING WITH PTC / IH.

 

THAT IS WHAT WE ALL HAVE TO LEARN HOW TO DO.

kiki <kikijrfan8@verizon.net> wrote:

Here are a few names that I have come up with for the new site tell me what you all think if you would please.

 

 

 

Benign Intracranial Hypertension (Pseudotumor Cerebri)       

 

I.H /PTC Forum or support board

 

PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.

 

Welcome to the new home of PTC guidance forum or group.

 

Life with PTC or Pseudotumor Cerebri

 

Living with PTC / IH

 

 

 

Thanks

Kiki

  Nikky

---

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

---

We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

  Nikky

---

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

Yes we have to learn to live with it, but I don't think ANYONE likes it at all !!!!!

Nicole Wargo <black_panther_nikky@yahoo.com> wrote:

I LIKE LIVING WITH PTC / IH.

 

THAT IS WHAT WE ALL HAVE TO LEARN HOW TO DO.

kiki <kikijrfan8@verizon.net> wrote:

Here are a few names that I have come up with for the new site tell me what you all think if you would please.

 

 

 

Benign Intracranial Hypertension (Pseudotumor Cerebri)       

 

I.H /PTC Forum or support board

 

PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.

 

Welcome to the new home of PTC guidance forum or group.

 

Life with PTC or Pseudotumor Cerebri

 

Living with PTC / IH

 

 

 

Thanks

Kiki

  Nikky

---

Looking for earth-friendly autos?
Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center.

---

We won't tell. Get more on shows you hate to love
(and love to hate): Yahoo! TV's Guilty Pleasures list.

  Nikky

Yes i have went through the same thing for 4 months i had lp's done once a week or once every two weeks.  it is hard.  I even knew were to tell the doctor to put the needle.  now i have a vp shunt put in i had the surgery on aug06 it helps but i still get headachs but not as bad as they were. but still get pretty bad.  I am also 15 weeks pregnet right now and and i have a 16 month old daughter.  it is hard do to i am getting real bad headachs.  Some times i can't left my head off the bed  and now i am working full time i had been in and out of work i was hospitalize in dec06 for two weeks for pain management and some times i still end up in the ER for help with the pain i  have

francesreneeamos <francesreneeamos@yahoo.com> wrote:

Hi everyone, I hope everyone is doing well!! It's been a while
since I've been on the computer. I was having lp's done every other
week for quite some time. My doctor had me on all the meds and
everything for over a year now. I was almost at the giving up point
because from what I hear is it never really goes away.
A couple of months ago I stopped taking all the meds to do a
little trial to see what my pressure was before and after I quite
taking them. Nothing changed!! Can you believe this? here I am
taking all these meds and they are making no difference!!
I finally got a second opinion. I was told there is NO reason
I should be on all these meds, and getting these lp's done so
frequently if there is no change. I even tried something else, I
waited 2 months before I went back for another LP. Still no change!
Then I got an appointment with a Neurosurgeon. He also
said "There is no reason for this much torture to your body" I can't
believe my ears!!! Next week I am going to see a Neuro-
optimologist. Almost a year and a half and I've never even heard of
one of these docs. He said this doc will determine whether or not I
really do have ptc. Have any of you been through this??? I'd
really like to know if I'm not the only one going through this total
shock!! Please let me know that ther really is HOPE. Maybe I've
been misdiagnosed or something.
Ffrances in K.C.

---

Don't get soaked. Take a quick peak at the forecast
with theYahoo! Search weather shortcut.

my name is karey baker from ohio i am on meds called diomox 500 mg and the are working good for me my site is good , no headaches,or any other symptoms my neralogist is excelent he actually wrote a section on ptc in a medical book he is great... his name is dr korsmorsky out of cleveland clinic  only had to do the one lp and that was at diagnosing.

francesreneeamos <francesreneeamos@yahoo.com> wrote:

Hi everyone, I hope everyone is doing well!! It's been a while
since I've been on the computer. I was having lp's done every other
week for quite some time. My doctor had me on all the meds and
everything for over a year now. I was almost at the giving up point
because from what I hear is it never really goes away.
A couple of months ago I stopped taking all the meds to do a
little trial to see what my pressure was before and after I quite
taking them. Nothing changed!! Can you believe this? here I am
taking all these meds and they are making no difference!!
I finally got a second opinion. I was told there is NO reason
I should be on all these meds, and getting these lp's done so
frequently if there is no change. I even tried something else, I
waited 2 months before I went back for another LP. Still no change!
Then I got an appointment with a Neurosurgeon. He also
said "There is no reason for this much torture to your body" I can't
believe my ears!!! Next week I am going to see a Neuro-
optimologist. Almost a year and a half and I've never even heard of
one of these docs. He said this doc will determine whether or not I
really do have ptc. Have any of you been through this??? I'd
really like to know if I'm not the only one going through this total
shock!! Please let me know that ther really is HOPE. Maybe I've
been misdiagnosed or something.
Ffrances in K.C.

---

Expecting? Get great news right away with email Auto-Check.
Try the Yahoo! Mail Beta.

Well, I can relate to all of you (unfortunately).  I was just
diagnosed with PTC in January.  I've suffered with headaches and all
the "classic symptoms" for what seems like forever, and it was like
pulling teeth to get a doctor to believe me.  It got to a point where
I figured that I was meant to suffer, and that I'd just have to deal
with it.  I went to the opthamologist because my vision was so blurry
that my doctor referred me (I think she was just "passing the
buck").  Fortunately for me, I saw the right eye doctor who took one
look inside my eyes and said out loud "OH GOD!"  It was really bad -
I had already lost some vision in my right eye . . . ANyway, after a
few very uncaring appointments with a neurologist in town (she wanted
me to have LP's EVERY OTHER DAY), I opted to get a second opinion at
Mayo Clinic in Rochester, MN>  I am so pleased with my care.  We have
a definate Plan of Care now.  I am being followed by a neurologist, a
neurosurgeon, a neuro-opthamologist and a massage
therapist/reflexologist.  My Opening Pressures have been very high,
and unfortunately, a VP shunt looks like it is going to be
inevitable, but at least I have doctors who believe me and care about
my well being.  On a side note:  Don't be afraid to get a second (or
3rd or 4th ) opinion.  No one knows your body and your symptoms
better than YOU.
Best of luck to you all.  I'm glad that I found a wonderful support
group.  This is not a fun disorder to suffer from.  ~Joanne


ptc@yahoogroups.com, "jasmine.here" <jasmine.here@...> wrote:
>
> I don't know much about the VP shunt as I don't have one myself,
not
> yet anyway.  I do however know about filing for disability.  I have
> been attempting to get disability myself for well over a year now.
> It is a long and tedious process and not something that happens
> quickly (which is what one needs considering your bills don't stop
> just because your sick and unable to work).  I have been denied
twice
> (which I am told is normal) and I have just completed the paper
work
> for filing for a hearing where I must go before the judge.  No
> attorney or lawyer will help me with my case either *until* I have
a
> court date set which I am told will take another 30 to 60 days.  In
> the meantime, things are very difficult as are yours.  The best I
can
> tell you is to take the advice on filing for disability and start
> NOW.  If you do, don't give up on it even though it is extremely
> frustrating (as is most of the things we deal with when having
> IH/PTC).  Look to friends and family and people *here* for support
> and feel free to vent.  I know and realize that most of the time it
> is difficult for the people you live with on a daily basis to
> understand how you feel and what you are going through.  But they
do
> love you and the people *here* care as well.  Please take extra
> special care of you and your children.  And most importantly, don't
> give up!  Hope this has helped in some small way.
>
> Wishing you the best,
> Jasmine
>
> --- In ptc@yahoogroups.com, mary kadak <maylove143@> wrote:
> >
> > My Doctor is good but there is not much he can do for is just
when
> the headaches get so bad and i start to vomit all the time he puts
me
> in the hospital for pain management i don't know if i would have
been
> worse with out the VP shunt but i don't want to find out.  But
right
> now it  is real hard for me due to being pregnant i some times feel
> like i am not going to make it through this pregnancy.  i have a
> young daughter who needs my time and i am working full time due to
i
> need to pay off bills since i have been out of work in the past 6
> months i have only work 2 months.
> >   But my doctor told me to go on permanent disability but we have
> rent and other bill i don't think we would make it on my husband
> check and the state disability money with 1 young child and another
> one on the way.
> >   It has also been taking a total on my marriage too. do to me
not
> feeling go and pain and he get upset and we start to fight.
> >   all i do is live my life day by day.  I always tell my self
when
> i wake up in the morning i say let see were today will take me.
Most
> of the time i have a hard time getting out of bed due to i wake up
> with a headache and also my shunt are has been hurting a lot
> >   please give any ideas you might have
> >
> > jwtooblsd blessed <jwtooblsd@> wrote:
> >           Hello, Iam sorry that ya'll are having so much pain. I
> > had a VP shunt put in back in December and have no
> > headaches. The neurosurgery group is listed #2 in the
> > nation. I do have vision loss in my left eye, but I
> > had that before the shunt.
> > --- Brandie Leehy <brandieleehy@> wrote:
> >
> > > I went through the same things. I have a VP shunt as
> > > well. Still have horrible headaches sometimes. The
> > > ER refuses to give me anything and calls me a drug
> > > addict. I am so fed up with all this. I can't find a
> > > doc who will give me anything stronger than vicodin
> > > 5/500 and those make me vomit and do little for my
> > > headaches. I asked my pain management doc for
> > > something stronger and he started going off on me
> > > threatning to take my vicodin away and leave me with
> > > nothing because he doesn't prescribe anything else.
> > > Real big asshole. Excuse the language. Just stressed
> > > and fed up. I don't recommend a VP shunt. Some
> > > might, but I don't. I am still just as misrable and
> > > now I have a huge lump on my head, that I can't
> > > sleep on, a tube going down my stomach that
> > > shows(which prevents me from bending or stretching
> > > backwards--it pulls), my hair is like 20 different
> > > links from being shaved so many times and I am just
> > > plain uncomfortable. I would take an LP over this
> > > anyday. Also, all the meds
> > > they give you for this have a tendency to give you
> > > kidney stones and I already had past occurences and
> > > I am a frequent maker, but they made me take them
> > > anyway saying they would help(they only made it
> > > worse and made me sound and act delusional and could
> > > no longer taste carbonated beverages). After 17
> > > lithotripsies and 6 stone retrievals, I now have
> > > medular sponge kidney. So that is the path I have
> > > traveled. Not saying you will but giving the heads
> > > up just in case.
> > >
> > > Brandi- Illinois
> > >
> > > mary kadak <maylove143@> wrote:
> > > Yes i have went through the same thing for
> > > 4 months i had lp's done once a week or once every
> > > two weeks. it is hard. I even knew were to tell
> > > the doctor to put the needle. now i have a vp shunt
> > > put in i had the surgery on aug06 it helps but i
> > > still get headachs but not as bad as they were. but
> > > still get pretty bad. I am also 15 weeks pregnet
> > > right now and and i have a 16 month old daughter.
> > > it is hard do to i am getting real bad headachs.
> > > Some times i can't left my head off the bed and now
> > > i am working full time i had been in and out of work
> > > i was hospitalize in dec06 for two weeks for pain
> > > management and some times i still end up in the ER
> > > for help with the pain i have
> > >
> > > francesreneeamos <francesreneeamos@> wrote:
> > > Hi everyone, I hope everyone is doing well!!
> > > It's been a while
> > > since I've been on the computer. I was having lp's
> > > done every other
> > > week for quite some time. My doctor had me on all
> > > the meds and
> > > everything for over a year now. I was almost at the
> > > giving up point
> > > because from what I hear is it never really goes
> > > away.
> > > A couple of months ago I stopped taking all the meds
> > > to do a
> > > little trial to see what my pressure was before and
> > > after I quite
> > > taking them. Nothing changed!! Can you believe this?
> > > here I am
> > > taking all these meds and they are making no
> > > difference!!
> > > I finally got a second opinion. I was told there is
> > > NO reason
> > > I should be on all these meds, and getting these
> > > lp's done so
> > > frequently if there is no change. I even tried
> > > something else, I
> > > waited 2 months before I went back for another LP.
> > > Still no change!
> > > Then I got an appointment with a Neurosurgeon. He
> > > also
> > > said "There is no reason for this much torture to
> > > your body" I can't
> > > believe my ears!!! Next week I am going to see a
> > > Neuro-
> > > optimologist. Almost a year and a half and I've
> > > never even heard of
> > > one of these docs. He said this doc will determine
> > > whether or not I
> > > really do have ptc. Have any of you been through
> > > this??? I'd
> > > really like to know if I'm not the only one going
> > > through this total
> > > shock!! Please let me know that ther really is HOPE.
> > > Maybe I've
> > > been misdiagnosed or something.
> > > Ffrances in K.C.
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Don't get soaked. Take a quick peak at the
> > > forecast
> > > with theYahoo! Search weather shortcut.
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Want to start your own business? Learn how on Yahoo!
> > > Small Business.
> >
> > __________________________________________________________
> > Do you Yahoo!?
> > Everyone is raving about the all-new Yahoo! Mail beta.
> > http://new.mail.yahoo.com
> >
> >
> >
> >
> >
> > ---------------------------------
> > Don't get soaked.  Take a quick peak at the forecast
> >  with theYahoo! Search weather shortcut.
> >
>

I can appreciate that reply.  Every time a doctor opens their mouth -
  I am shocked and appalled at what comes out.  This doc seems to
think that millions of people have this condition.  I then have to
ask....."why don't you have a better treatment/cure plan?"  that one
always stumps them.
It's very frustrating!
My husband and I were watching Discovery Health channel last night.
He asked 'why don't they do a series on PTC?; -- like on mystery
diagnosis.  I said - 'maybe i should write in and suggest it - cause
it sure is a mystery to all".
ugh!




--- In ptc@yahoogroups.com, Daniel Mcneill <de_mcneill@...> wrote:
>
> I can only reply - because they are clueless!! You do not have to
have papilledema to have high pressure - I would say that your body
has adjusted to the dosage of diamox and my no longer be working as
well - My neuro put me through all kinds of migraine/headache/anti-
seizure drugs to try to help alleviate the headaches but guess what-
nothing worked! At least not for the long term - some would work for
a couple of weeks and then stop - the majority I saw no improvement
with at all! Good luck -
>   Denia
>
> Brenda <bkmobes@...> wrote:
>           Sorry I've been away so long - just busy with life and
not feeling too
> badly. Until this past week - which has prompted this question. I
> have been on the same dosage of Diamox now for 3 months. During
the 3
> months - my pain level stayed around a 2. Now for the past week -
my
> headache seems to be worsening. Could it be that my body has
adjusted
> to this dosage of Diamox - and is now needing more? I don't know -
> just grasping here.
> On another note - I saw my Neuro-optho last week - and she said
since
> the 'papilladema' is gone in my eyes - that she can now refer me
to a
> headache specialist. I'm like WHAT????? What part of this are they
> not understanding. I don't have a migrane. I have a condition that
> is causing me to have severe pain in my head. I've tried two
> different migrane meds and they did nothing. Why would I need to
see
> a headache specialist?
> Brenda
>
>
>
>
>
>
> ---------------------------------
> Never miss an email again!
> Yahoo! Toolbar alerts you the instant new Mail arrives. Check it
out.
>

I need help on this question my daughter is 13 and has had ptc for some
time. She was now tols her insulin levels are high and ast levels are
low. Something that was never there. She also has sever ear infectionsa
dn partial earing loss in the ear of the same side that they saw a
problem for ptc. My question is does anyone have articles or
information regarding ptc and ear infections they are related somehow
and I need the article for that.

HELPPPPPPPPPPPPPPPPPPPPPP

Erin

Sorry I've been away so long - just busy with life and not feeling too
badly. Until this past week - which has prompted this question. I
have been on the same dosage of Diamox now for 3 months. During the 3
months - my pain level stayed around a 2. Now for the past week - my
headache seems to be worsening. Could it be that my body has adjusted
to this dosage of Diamox - and is now needing more? I don't know -
just grasping here.
On another note - I saw my Neuro-optho last week - and she said since
the 'papilladema' is gone in my eyes - that she can now refer me to a
headache specialist. I'm like WHAT????? What part of this are they
not understanding. I don't have a migrane. I have a condition that
is causing me to have severe pain in my head. I've tried two
different migrane meds and they did nothing. Why would I need to see
a headache specialist?
Brenda

Ok! First ! ALL I was doing was trying to help and second I am
developing a site that is more than just a group forum it will have a
lot more info attached to it. I have been here since I was diagnosed
in 2000 this is my new user name. I will quit posting in here about
the new site and those of you that wish to be informed of it please
send me an email at kikijrfan8@...

Sorry to have upset anyone that is not what I had intended. I was
just trying to start something that would hopefully take off. I guess
this is what I considered my part of trying to help and raise
awareness, and I also have spoken with IHRF and have told them what I
was doing and they told me to send it to them when I was finished and
they would add to their site.

I really didn't think that I was doing any harm by posting in here. I
guess I learned my lesson on trying to help!

As far as the moderators in here the email addys are all boucing is
the reason I started all of this. So to conclude. I will quit posting
here.


Thank you all for your info I appreciate it.




--- In ptc@yahoogroups.com, Anji <anjihar@...> wrote:
>
> I agree with Glen.  I don't post much but i read all the time and
have for overr 4 years now.  The biggest problem with this illness is
we are all ready spread out all over the internet.  I can think of at
least 5 other IH/ PTC boards off the top of my head.  When I started
a site for awareness (www.ihawareness.com) I thought about adding a
forum but decided there were already plenty of them.  If we ever ALL
get together and brain storm we might actually get some where in at
least raising awareness and maybe even money for research.  And I
hate to tell you but all the groups I have visited get spam, even
those moderated.  Even my awareness site gets email spam.  Its there,
just live with it and delete.  Angie H.
>
> chdblwinnr@... wrote:            Hi All,
>
>   Just my $0.02 worth.
>
>   With all the emails (and there have been many hundreds of them)
regarding the spam we have been receiving recently (I've been here
since 1999 and things have been much worse in the past and we've all
managed to move along just fine); I find that the endless emailing
about how horrible the situation is and the drastic measures that
need to be taken and how the moderators have disappeared (to my
knowledge they are still here by the way) and how a new site is
needed.........that this is WORSE than the piddly little spam problem
we've had. We know what the spam is (the titles are usually a dead
giveaway) and the handy dandy delete button works really well to keep
our computers free from it. I admit I don't who the people are who
have decided to break off and start their own site but the one thing
I DO know is that you are trampling the people who are staying behind
at this site. It would have been nice for you folk(s) to consider how
annoying it is for us to deal with the
>  barrage of emails you've generated.
>
>   I'm sure I've ruffled a few feathers but please don't bother
hitting me with the personal emails. I won't read or respond to them.
>
>   Glen  (the guy who appreciates everything that SheLi and Tracy,
et al. have done over the last 8 or 9 years)
>
>
>
>
> ---------------------------------
>   AOL now offers free email to everyone. Find out more about what's
free from AOL at AOL.com.
>
>
> **************************************
> AOL now offers free email to everyone. Find out more about what's
free from AOL at http://www.aol.com.
>
>
>
>
> I GoodSearch for Intracranial Hypertension!
>
>   Raise money for your favorite charity or school just by searching
the Internet with GoodSearch - www.goodsearch.com - powered by Yahoo!
> Be sure and put Intracranial Hypertension in the box as the charity
you want picked.  Thanks, Angie
>

I need help on this question my daughter is 13 and has had ptc for some
time.  She was now tols her insulin levels are high and ast levels are
low. Something that was never there. She also has sever ear infectionsa
dn partial earing loss in the ear of the same side that they saw a
problem for ptc.  My question is does anyone have articles or
information regarding ptc and ear infections they are related somehow
and I need the article for that.


HELPPPPPPPPPPPPPPPPPPPPPP

Erin

I agree with Glen.  I don't post much but i read all the time and have for overr 4 years now.  The biggest problem with this illness is we are all ready spread out all over the internet.  I can think of at least 5 other IH/ PTC boards off the top of my head.  When I started a site for awareness (www.ihawareness.com) I thought about adding a forum but decided there were already plenty of them.  If we ever ALL get together and brain storm we might actually get some where in at least raising awareness and maybe even money for research.  And I hate to tell you but all the groups I have visited get spam, even those moderated.  Even my awareness site gets email spam.  Its there, just live with it and delete.  Angie H.

chdblwinnr@aol.com wrote:

Hi All,

 

Just my $0.02 worth.

 

With all the emails (and there have been many hundreds of them) regarding the spam we have been receiving recently (I've been here since 1999 and things have been much worse in the past and we've all managed to move along just fine); I find that the endless emailing about how horrible the situation is and the drastic measures that need to be taken and how the moderators have disappeared (to my knowledge they are still here by the way) and how a new site is needed.........that this is WORSE than the piddly little spam problem we've had. We know what the spam is (the titles are usually a dead giveaway) and the handy dandy delete button works really well to keep our computers free from it. I admit I don't who the people are who have decided to break off and start their own site but the one thing I DO know is that you are trampling the people who are staying behind at this site. It would have been nice for you folk(s) to consider how annoying it is for us to deal with the barrage of emails you've generated.

 

I'm sure I've ruffled a few feathers but please don't bother hitting me with the personal emails. I won't read or respond to them.

 

Glen  (the guy who appreciates everything that SheLi and Tracy, et al. have done over the last 8 or 9 years)

---

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.


**************************************
AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

I GoodSearch for Intracranial Hypertension!

Raise money for your favorite charity or school just by searching the Internet with GoodSearch - www.goodsearch.com - powered by Yahoo!
Be sure and put Intracranial Hypertension in the box as the charity you want picked.  Thanks, Angie

Hi All,

 

Just my $0.02 worth.

 

With all the emails (and there have been many hundreds of them) regarding the spam we have been receiving recently (I've been here since 1999 and things have been much worse in the past and we've all managed to move along just fine); I find that the endless emailing about how horrible the situation is and the drastic measures that need to be taken and how the moderators have disappeared (to my knowledge they are still here by the way) and how a new site is needed.........that this is WORSE than the piddly little spam problem we've had. We know what the spam is (the titles are usually a dead giveaway) and the handy dandy delete button works really well to keep our computers free from it. I admit I don't who the people are who have decided to break off and start their own site but the one thing I DO know is that you are trampling the people who are staying behind at this site. It would have been nice for you folk(s) to consider how annoying it is for us to deal with the barrage of emails you've generated.

 

I'm sure I've ruffled a few feathers but please don't bother hitting me with the personal emails. I won't read or respond to them.

 

Glen  (the guy who appreciates everything that SheLi and Tracy, et al. have done over the last 8 or 9 years)

---

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.


**************************************
AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

that name works for me.  Because apparently that's all we will do -
is live with it -- I don't see any cures racing around any corners
any time soon!






--- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:
>
> I am fine with that.
> --- kiki <kikijrfan8@...> wrote:
>
> > livinwith-PTC-IH.COM
> >
> >
> > This is the new site name IS this ok-- cus I will
> > register it and go on
> >
> >
>
>
>
>
>
>
>
_____________________________________________________________________
_______________
> Finding fabulous fares is fun.
> Let Yahoo! FareChase search your favorite travel sites to find
flight and hotel bargains.
> http://farechase.yahoo.com/promo-generic-14795097
>

Sorry I've been away so long - just busy with life and not feeling too
badly.  Until this past week - which has prompted this question.  I
have been on the same dosage of Diamox now for 3 months.  During the 3
months - my pain level stayed around a 2.  Now for the past week - my
headache seems to be worsening.  Could it be that my body has adjusted
to this dosage of Diamox - and is now needing more?  I don't know -
just grasping here.
On another note - I saw my Neuro-optho last week - and she said since
the 'papilladema' is gone in my eyes - that she can now refer me to a
headache specialist.  I'm like WHAT?????  What part of this are they
not understanding.  I don't have a migrane.  I have a condition that
is causing me to have severe pain in my head.  I've tried two
different migrane meds and they did nothing.  Why would I need to see
a headache specialist?
Brenda

I am fine with that.
--- kiki <kikijrfan8@...> wrote:

> livinwith-PTC-IH.COM
>
>
> This is the new site name IS this ok-- cus I will
> register it and go on
>
>






________________________________________________________________________________\
____
Finding fabulous fares is fun.
Let Yahoo! FareChase search your favorite travel sites to find flight and hotel
bargains.
http://farechase.yahoo.com/promo-generic-14795097

livinwith-PTC-IH.COM


This is the new site name IS this ok-- cus I will register it and go on

Enter your vote today! A new poll has been created for the
ptc group:

NEW Site NAMES

o www.ihptcsupport.com
o www.ihptcguidanceforum.com
o www.livingwithptcih.com
o www.PTCIHliving.com

To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2446842

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups - Join or create groups, clubs, forums &amp; communities.
web site listed above.

Thanks!

Here are a few names that I have come up with for the new site tell me what you all think if you would please.

 

 

 

Benign Intracranial Hypertension (Pseudotumor Cerebri)       

 

I.H /PTC Forum or support board

 

PTC Learning to live with PTC or Pseudotumor Cerebri a forum for support and guidance.

 

Welcome to the new home of PTC guidance forum or group.

 

Life with PTC or Pseudotumor Cerebri

 

Living with PTC / IH

 

 

 

Thanks

Kiki

Hello everyone,

 

I would like to introduce myself! I am Kiki, The reason for my message is that I would like to make a suggestion. I have done some digging and have found that the groups that are on yahoo the following groups are [PTC]  [ ptc-support-group] & [Pseudotumorcerebri] that are related to PTC all of the moderators have no working emails and it seems that no one is managing them and spammers are taking over.

 

I would like to start a new group that also has a website with it. I would like to get everyone's input on this. I don't want to do anything to hurt anyone's feelings. I just would like to keep a nice space for all of us to communicate! I really enjoy being able to talk to everyone.

 

So if everyone would send me an email back and let me know there thought I would appreciate it and I will get started on this right away and hope to have something in the next week ready to go.

 

this will be a site that WILL be monitored and managed!

 

Thanks and I wish all a pain free day.

 

Kiki

 

 

Enter your vote today! A new poll has been created for the
ptc group:

How would you like to see a NEW Group= Messageboard that has a site attached to it? I am considering starting a new site name PTC or similar with a messageboard right in it.


o Yes
o No
o Just new group
o Group on Yahoo
o Group on Google
o Group on Site with board

To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2441936

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

Enter your vote today!  A new poll has been created for the
ptc group:

NEW Site NAMES

   o www.ihptcsupport.com
   o www.ihptcguidanceforum.com
   o www.livingwithptcih.com
   o www.PTCIHliving.com


To vote, please visit the following web page:
http://groups.yahoo.com/group/ptc/surveys?id=2446842

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups - Join or
create groups, clubs, forums & communities.
web site listed above.

Thanks!

I don't know much about the VP shunt as I don't have one myself, not
yet anyway.  I do however know about filing for disability.  I have
been attempting to get disability myself for well over a year now.
It is a long and tedious process and not something that happens
quickly (which is what one needs considering your bills don't stop
just because your sick and unable to work).  I have been denied twice
(which I am told is normal) and I have just completed the paper work
for filing for a hearing where I must go before the judge.  No
attorney or lawyer will help me with my case either *until* I have a
court date set which I am told will take another 30 to 60 days.  In
the meantime, things are very difficult as are yours.  The best I can
tell you is to take the advice on filing for disability and start
NOW.  If you do, don't give up on it even though it is extremely
frustrating (as is most of the things we deal with when having
IH/PTC).  Look to friends and family and people *here* for support
and feel free to vent.  I know and realize that most of the time it
is difficult for the people you live with on a daily basis to
understand how you feel and what you are going through.  But they do
love you and the people *here* care as well.  Please take extra
special care of you and your children.  And most importantly, don't
give up!  Hope this has helped in some small way.

Wishing you the best,
Jasmine

--- In ptc@yahoogroups.com, mary kadak <maylove143@...> wrote:
>
> My Doctor is good but there is not much he can do for is just when
the headaches get so bad and i start to vomit all the time he puts me
in the hospital for pain management i don't know if i would have been
worse with out the VP shunt but i don't want to find out.  But right
now it  is real hard for me due to being pregnant i some times feel
like i am not going to make it through this pregnancy.  i have a
young daughter who needs my time and i am working full time due to i
need to pay off bills since i have been out of work in the past 6
months i have only work 2 months.
>   But my doctor told me to go on permanent disability but we have
rent and other bill i don't think we would make it on my husband
check and the state disability money with 1 young child and another
one on the way.
>   It has also been taking a total on my marriage too. do to me not
feeling go and pain and he get upset and we start to fight.
>   all i do is live my life day by day.  I always tell my self when
i wake up in the morning i say let see were today will take me.  Most
of the time i have a hard time getting out of bed due to i wake up
with a headache and also my shunt are has been hurting a lot
>   please give any ideas you might have
>
> jwtooblsd blessed <jwtooblsd@...> wrote:
>           Hello, Iam sorry that ya'll are having so much pain. I
> had a VP shunt put in back in December and have no
> headaches. The neurosurgery group is listed #2 in the
> nation. I do have vision loss in my left eye, but I
> had that before the shunt.
> --- Brandie Leehy <brandieleehy@...> wrote:
>
> > I went through the same things. I have a VP shunt as
> > well. Still have horrible headaches sometimes. The
> > ER refuses to give me anything and calls me a drug
> > addict. I am so fed up with all this. I can't find a
> > doc who will give me anything stronger than vicodin
> > 5/500 and those make me vomit and do little for my
> > headaches. I asked my pain management doc for
> > something stronger and he started going off on me
> > threatning to take my vicodin away and leave me with
> > nothing because he doesn't prescribe anything else.
> > Real big asshole. Excuse the language. Just stressed
> > and fed up. I don't recommend a VP shunt. Some
> > might, but I don't. I am still just as misrable and
> > now I have a huge lump on my head, that I can't
> > sleep on, a tube going down my stomach that
> > shows(which prevents me from bending or stretching
> > backwards--it pulls), my hair is like 20 different
> > links from being shaved so many times and I am just
> > plain uncomfortable. I would take an LP over this
> > anyday. Also, all the meds
> > they give you for this have a tendency to give you
> > kidney stones and I already had past occurences and
> > I am a frequent maker, but they made me take them
> > anyway saying they would help(they only made it
> > worse and made me sound and act delusional and could
> > no longer taste carbonated beverages). After 17
> > lithotripsies and 6 stone retrievals, I now have
> > medular sponge kidney. So that is the path I have
> > traveled. Not saying you will but giving the heads
> > up just in case.
> >
> > Brandi- Illinois
> >
> > mary kadak <maylove143@...> wrote:
> > Yes i have went through the same thing for
> > 4 months i had lp's done once a week or once every
> > two weeks. it is hard. I even knew were to tell
> > the doctor to put the needle. now i have a vp shunt
> > put in i had the surgery on aug06 it helps but i
> > still get headachs but not as bad as they were. but
> > still get pretty bad. I am also 15 weeks pregnet
> > right now and and i have a 16 month old daughter.
> > it is hard do to i am getting real bad headachs.
> > Some times i can't left my head off the bed and now
> > i am working full time i had been in and out of work
> > i was hospitalize in dec06 for two weeks for pain
> > management and some times i still end up in the ER
> > for help with the pain i have
> >
> > francesreneeamos <francesreneeamos@...> wrote:
> > Hi everyone, I hope everyone is doing well!!
> > It's been a while
> > since I've been on the computer. I was having lp's
> > done every other
> > week for quite some time. My doctor had me on all
> > the meds and
> > everything for over a year now. I was almost at the
> > giving up point
> > because from what I hear is it never really goes
> > away.
> > A couple of months ago I stopped taking all the meds
> > to do a
> > little trial to see what my pressure was before and
> > after I quite
> > taking them. Nothing changed!! Can you believe this?
> > here I am
> > taking all these meds and they are making no
> > difference!!
> > I finally got a second opinion. I was told there is
> > NO reason
> > I should be on all these meds, and getting these
> > lp's done so
> > frequently if there is no change. I even tried
> > something else, I
> > waited 2 months before I went back for another LP.
> > Still no change!
> > Then I got an appointment with a Neurosurgeon. He
> > also
> > said "There is no reason for this much torture to
> > your body" I can't
> > believe my ears!!! Next week I am going to see a
> > Neuro-
> > optimologist. Almost a year and a half and I've
> > never even heard of
> > one of these docs. He said this doc will determine
> > whether or not I
> > really do have ptc. Have any of you been through
> > this??? I'd
> > really like to know if I'm not the only one going
> > through this total
> > shock!! Please let me know that ther really is HOPE.
> > Maybe I've
> > been misdiagnosed or something.
> > Ffrances in K.C.
> >
> >
> >
> >
> >
> > ---------------------------------
> > Don't get soaked. Take a quick peak at the
> > forecast
> > with theYahoo! Search weather shortcut.
> >
> >
> >
> >
> > ---------------------------------
> > Want to start your own business? Learn how on Yahoo!
> > Small Business.
>
> __________________________________________________________
> Do you Yahoo!?
> Everyone is raving about the all-new Yahoo! Mail beta.
> http://new.mail.yahoo.com
>
>
>
>
>
> ---------------------------------
> Don't get soaked.  Take a quick peak at the forecast
>  with theYahoo! Search weather shortcut.
>

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

From: kiki

To: ptc@yahoogroups.com ; ptc-support-group@yahoogroups.com ; Psuedotumorcerebri@yahoogroups.com

Sent: Thursday, February 22, 2007 11:17 AM

Subject: [ptc] *****UPDATE****** ON site

Hello All,

 

I hope everyone is having a good day!

 

I am still moving along on the new site.

 

Thank you all for the thoughts I have narrowed it down to this list

 

• www.livingwithPTC.com  or .org
• or
• www.livingwithIHorPTCsupport.com
• or
• www.ihptcsupport.com

 

Then the title of the board will be

 

• Living with PTC/ IH support forum
• or
• Welcome to the new home of Living with PTC guidance forum.

 

Please send me your input I really appreciate it!

 

I am really hopeing to get the site up and working by the end of the week!

 

this is if all goes well!

 

Thanks again

 

Kiki

• I like Living with PTC/ IH support forum
• I also likewww.livingwithPTC.com  or .org

Is there anyway you can add”/IH” to it?  IH is the “new” mostly used term for those diagnosed now.  I think it would be easier for them to find when they’re diagnosed that way.  I do really love the “living with” thing.  Because we really want to support helping people to “live” with this.  Unfortunately it’s not a short term thing!  IH is a lifestyle.  “Welcome to our world!  “L

You are doing an awesome job!

Christine

---

From: ptc@yahoogroups.com [mailto:ptc@yahoogroups.com] On Behalf Of kiki
Sent: Thursday, February 22, 2007 11:17 AM
To: ptc@yahoogroups.com; ptc-support-group@yahoogroups.com; Psuedotumorcerebri@yahoogroups.com
Subject: [ptc] *****UPDATE****** ON site
Importance: High

Hello All,

I hope everyone is having a good day!

I am still moving along on the new site.

Thank you all for the thoughts I have narrowed it down to this list

• www.livingwithPTC.com  or .org
• or
• www.livingwithIHorPTCsupport.com
• or
• www.ihptcsupport.com

Then the title of the board will be

• Living with PTC/ IH support forum
• or
• Welcome to the new home of Living with PTC guidance forum.

Please send me your input I really appreciate it!

I am really hopeing to get the site up and working by the end of the week!

this is if all goes well!

Thanks again

Kiki

• I like Living with PTC/ IH support forum
• I also likewww.livingwithPTC.com  or .org

Is there anyway you can add”/IH” to it?  IH is the “new” mostly used term for those diagnosed now.  I think it would be easier for them to find when they’re diagnosed that way.  I do really love the “living with” thing.  Because we really want to support helping people to “live” with this.  Unfortunately it’s not a short term thing!  IH is a lifestyle.  “Welcome to our world!  “L

You are doing an awesome job!

Christine

---

From: ptc@yahoogroups.com [mailto:ptc@yahoogroups.com] On Behalf Of kiki
Sent: Thursday, February 22, 2007 11:17 AM
To: ptc@yahoogroups.com; ptc-support-group@yahoogroups.com; Psuedotumorcerebri@yahoogroups.com
Subject: [ptc] *****UPDATE****** ON site
Importance: High

Hello All,

I hope everyone is having a good day!

I am still moving along on the new site.

Thank you all for the thoughts I have narrowed it down to this list

• www.livingwithPTC.com  or .org
• or
• www.livingwithIHorPTCsupport.com
• or
• www.ihptcsupport.com

Then the title of the board will be

• Living with PTC/ IH support forum
• or
• Welcome to the new home of Living with PTC guidance forum.

Please send me your input I really appreciate it!

I am really hopeing to get the site up and working by the end of the week!

this is if all goes well!

Thanks again

Kiki