DaShaunda,

Your sister needs a new neurologist NOW. Lasix can be used to treat IH (PTC) but
not at that low of a doseage. When you say the Diamox made her sick, how did it
make her sick? Did is make her skin tingle? tired? stomach ache? queasy? If so
those are normal and mostly it goes away over time, or you just get used to it.
The benefit of Diamox far outweighs the negative side effects. Also, if
she's allergic to Diamox (which can happen if she's allergic to sulfa
drugs) there is also Topamax, which can also be combined with Lasix (furosemide)
aka "water pill" just as the Diamox can, to be more effective. Also,
LP's can be very helpful, but frequently the help is only temporary, and
many times brief, not to mention repeated LP's can cause scar tissue to
build up around the spinal column and puts her at risk for infection and dermoid
cysts, which is the last thing she needs. Personally, I've been on a very
high dose of both Diamox
and Lasix (at ever increasing doses) for over a year now. I've also had
repeated LP's (over 50 now) and the relief I get from LP's last less
than 20 hours. The relief during that 20 hours is utter bliss, but the crash
back into excruciating pain is only amplified by the previous bliss. Most
doctors don't recommend serial (repeated) LP's anymore because the
relief being temporary, and because of the other risks associated with repeated
LP's.

Jumping into getting a shunt would be a bad idea, unless your sister is
experiencing profound vision loss. She needs to be aggressively treated
medically before going the surgical route, and even then perhaps an ONSF/ONSD
(cutting a small hole into the membrane around the optic nerve to allow fluid to
drain so it doesn't squeeze the nerve) would be a better first surgical
course of action if she's experiencing visual loss, which would allow her to
get her medication adjusted appropriately.

Surgical treatments should be left as a last resort.. especially shunts. Shunts
are not always effective, and many times the shunt doesn't resolve the
headaches.. it may even cause more headaches. Plus, shunts are notorious for
failing and needing to be replaced.

As for being on Medi-Cal or Medicaid, there's no reason she shouldn't
have decent treatment. I have Medi-Cal, and I see a pretty decent neurologist, a
wonderful ophthalmologist, and a top notch neuro-ophthalmologist (which my
medical group begrudgingly allowed me to see). Your sister has the right to
request to see a different neurologist, and I would recommend traveling to the
largest town around in order to get the most qualified person to see her. Also,
contact the Intracranial Hypertension Research Foundation (IHRF) at:
http://www.ihrfoundation.org to get a referral to a neurologist in her area that
is familiar with IH/PTC. This is important!

If she doesn't get aggressive medical treatment she could lose part or all
of her vision. Trust me, I speak from experience, and it sucks to have only a
tiny bit of vision left and to know it will never come back.

Also, tell your sister to check out a wonderful support site for people with
IH/PTC at: http://www.findmemyhouse.com/ptc/ptc_forum/index.php

There's a wealth of information available there, plus the support and
friendship of other people with IH/PTC is invalueable. And those ladies (and
men) over there really do care and are super supportive. It's frequently
very hard for family members and other people in our lives to understand what
we're going through, especially with how internal and invisible the pain and
emotions of this syndrome are.. not to mention it's rarity. It's not
like Multiple Sclerosis or Cancer where there are a bunch of people that have it
all over the place, so you can meet lots of other people with it where ever you
go. IH/PTC isn't like that. Places like this list and messageboards like the
link I gave you, are frequently our only link to others with this syndrome. I
hope you will encourage her (and your family) to read up and get a real feeling
for what she's going through, and what things to possibly expect.

IH/PTC is a very individualized syndrome, so not everyone has the same
experiences. Some have headaches, others don't. Some have vision issues,
others don't. Some people are treated easily with medication, others
don't respond. My point is, only through trial and error will things
improve, and sometimes those trial times take time and effort, and your sister
will need encouragement not to give up, and to learn to be her own advocate for
her care.

I wish your sister, and you and your family, all the very best. Please use the
links I've given you.. I promise you won't regret it!

Ocean McIntyre

DaShaunda wrote:
> Thank you for the response. She does see an opthamologist
probably
> once a month to check on her papalledema. ..right now she has it and
> when she told her neuro he said to increase her lasix to 90mg a day.
> He seems to be a quack but we live in a small town and there's no
> other doctors - plus she's on state medical so she doesn't get much
> coverage.
> As far as Diamox goes she did take it in the beginning but it made
> her sick. She also takes valium, percocet, and tramadol.
> She's only had one LP - I've heard that this is a treatment that a
> lot of patients use but they don't seem to want to do that here. The
> one she did have seemed to help a lot.
> We're looking into getting the shunt but again because of her medical
> we have to wait until she's accepted which will be a few more
> months. Can anyone tell me how the shunt works? Is it a good
> improvement? She's very scared about having the surgery and wants to
> know if it's worth it.
> --- In ptc@yahoogroups. com , "Jennifer Stark" <jenniferstark1976@ ...>
> wrote:
>>
>> --- In ptc@yahoogroups. com , "DaShaunda" <dashaunda_h@ > wrote:
>> >
>> > I found this website trying to found out more information about
>> PTC.
>> > My sister was diagnosed in November 2007 so we're pretty
> unfamiliar
>> > with the disease and it seems like the doctors are too. It just
>> seems
>> > odd to me that she can be so sick that she can't move from the
> couch
>> > and when she calls the doctor he says to up the water pills - it
>> seems
>> > that's his answer to everything (She's taking 80mg of Lasix...is
>> that
>> > normal?) Our family has a lot of unanswered questions and I'm
>> hoping
>> > to find some answers here...
>> >
>>
>> Hello,
>>
>> First thing is I am glad that you found this group. Secondly
> your
>> sister needs to get to a doctor who knows about PTC. Is she seeing
> a
>> neuro Dr? Even if she is she needs another one. Did the Dr. mention
>> Diamox, that is what a lot of us take and it is around 1000mgs a
> day
>> others also take things for pain if needed a lot of people do need
> the
>> pain meds. It can come and go some people have found relief with
>> loosing weight and some it doesn;t do anything for. It is very very
>> important that she had a dr who can fully understand the importance
> of
>> getting her fluid levels down. I am in by no way tring to scare you
>> but this is a seriouse disease and with out proper treatment she
> can
>> loose part or all of her vision. She also needs to be followed by a
>> opthamologist preferably a neuro opthamologist who can really check
>> her vision and check her optic nerve to see if there is any
> sweeling.
>> It is important to understand that this disease effects people
>> differently. For instance a lot of people have the migranes, I
> however
>> do not have them. Some have no vision problems and some have a lot.
>> Ther is not enough info about this diseas but this is a great group
>> and they are very helpfull here. Please feel free to write me with
> any
>> questions you have God bless
>> Jennifer
>>
>