Psuedo Tumor Cerebri... Who's Got it??

Top 125. May 30, 2006 4:29 PM

» nikkiwkhotmail - Surgery for PTC

In response to Surgery for PTC posted by Goddesslight2002:

Hello I am just seeing if you are still on here and if you are all right???? I recently was diagnoseed with this scary PTC too... and am going to go through Natural Healing....if you know what I mean>>>>hollistic healing please try it in the community there should be someone who can help you find them ...without meds or surgery you have been through total hell....in my case I have taken my power back from the MEDICAL DOC"S QUACKS and found another resource in which they can tooo help....Kevin Trudeau...is a good author he can assist the situation.....there is help out there hang in there and do not let them butcher you any longer..... Sarah please email me if you are still here

-- posted by nikkiwkhotmail

Top 126. May 30, 2006 4:36 PM

» nikkiwkhotmail - I Have PTC Too

In response to I Have PTC Too posted by Divinesin:

Oh wow the meds that they give you to say you are BI POLARmakes the pressure higher get off the meds immediately...You need to get your power back as I am and get a Natural Healer...Hollistic healer is what I am going to see very very very soon he says he can fix this....and has seen it a lot......Get the books by Kevin Trudeau there is too hope out there the doc's we have gone to are the QUACKS>>>>>>!!!! They are nothing but butchers that is what I have seen so far...unwilling to help to find out what the heck causes this PTC....Go to a YOGA place anyone in there will be able to help you find a healer...okay...and think about taking YOGA to help you too I do and it does help....I am soo sorry you are too going through this haneaous abuse by what they call DOCTORS YEAH RIGHT>>>!!! They are bad not all but welll am learning greedy not caring etc,,,,..If you want to talk on the phone I would love to be there for you and vice a versa you are not alone in this okay please email me at Nikkiwk@hotmail.com and we can trade numbers and figure this hell out okay.... hang in there okay

Sarah

-- posted by nikkiwkhotmail

Top 127. Jun 1, 2006 10:49 AM

» dania32 - i have PSEUDO TUMOR CEREBRI 25 yrs old VERY depressed :(

In response to i have PSEUDO TUMOR CEREBRI 25 yrs old VERY depressed sad

posted by nikkiwkhotmail:

I was dx as having PTC last August by one of the best neurosurgeons. I was having constant headaches and having black-out spells were I could not see but could hear. I was taking 60mg of prednisone a day, which did help some but their is alot of serious side effects to the medication. In September I had the shunt placement done from my spinal cord to my perioneal(stomach) cavity. I could not have it run from brain to my heart due to having too small ventricals in my brain--I would not have wanted this done,its too risky.

-- posted by dania32

Top 128. Jun 2, 2006 3:49 PM

» nikkiwkhotmail - ALTERNATIVE HELP EVERYBODY !

Please out there there is too help seek other medical attention such as ACCUPUNCTURISTS there have been good results on that for this condition for crying out loud there is a lady that had this and it was gone with the direction the accupuncturist put her in just found this out today!!!!!! It is not too late just find a good one ask around at your LOCAL YOGA PLACE They should help recommend one and call around until one has treated this condition I too have this and have FAITH that there is too a CURE!!!! The one told this women no more meat and only raw fruits and veggies stay away from restaurants and any anay any any processed foods.....Seriously it is a LIFESTYLE CHANGE TO get rid of this maddness and believe me once I go too I will change do anything including eat dirty socks jusst kiddin to get this out of my life and stay away from drugs and surgery yes that is stay away from drugs and surgery!!! Please anyone out that that has this take this message seriously and seal it in your heart there is TOO help out there....

U are not alone

-- posted by nikkiwkhotmail

Top 129. Jun 2, 2006 4:01 PM

» nikkiwkhotmail - U dont't have to be afraid anymore okay!

Dania and u out there please listen to me it is okay my mom today phoned me and told me of a miracle w a woman that had this 9 years ago and an accupuncturist helped her also back in Nove of 05 she knew she was having a stroke and her hubby wanted to rush her to the E.R. she in return refused to go there she phoned her Accupuncturist and guess what you gals and guys she is fine she was paralyzed on the left side WAS is the word with the help from him in change of diet or and SPECIAL herbs she is fine you would never know she had had a stroke NEVER know mom says she is fine ....Please I know this is tough too but do as i say AND phone accupuncturists in your area and simply talk to them see if they have TREATED this condition....they of course can not say cured which is crazxy but you will be ! by someone who has this sacred heart and practice! I can not wait to be in that statistic range and for all of you out there too be tooo.....!God Speed us and all out there who needs help!

-- posted by nikkiwkhotmail

Top 130. Jun 7, 2006 2:00 PM

» dania32 - U dont't have to be afraid anymore okay!

In response to U dont't have to be afraid anymore okay! posted by nikkiwkhotmail:

What freaks me out the worst about PTC is going
blind--I am an avid book reader and I have decided
to learn how to read braille. Having these
headaches though ,alot of times I just cannot sit
down and read like I used to could. My headaches
have improved somewhat since I had the shunt and
regulator placed from my spine to my peritoneal
cavity and I haven't had a blackout spell since
I had put in. I know alot of people have thought
it sounds scary but I have a wonderful neurosurgeon that I trust (I have had to have 4
sugeries for the shunt since last September-2005,
I've learned that I have limitations to what I can
do-not much bending or heavy lifting, it has
pulled out of my spine and has gotten kinked up.)
When it is working properly, my pressure headaches
aren't constant. Thank goodness!! I had tried
everything recommended by the doctors prior to
having the shunt put in and nothing worked. I
had to do this, it was a last resort, but I have
3 small children at home and I couldnot function
as a mother with the headaches. Dania

-- posted by dania32

Top 131. Jul 5, 2006 2:54 PM

» NC79 - U dont't have to be afraid anymore okay!

In response to U dont't have to be afraid anymore okay! posted by dania32:
I am a mother with 2 small children. I have been battling PTC for 8 years. I have taken diamox and topamax. I am currently on diamox. Does anyone know what causes this disease? I have been wanting to know this for years. I also couldn't fuction with the headaches.

-- posted by NC79

Top 132. Jul 19, 2006 4:28 PM

» NC79 - Dealing with PTC

In response to Dealing with PTC posted by bugtippin:

Hi I am a 27 year od female from NC. I have been batteling PTC for 7 years. It had recently gone away. Now, it is back again. My neuro. doesn't give me much hope. I have been on topamax. I did not like it. I gave me memory trouble and confusion. I started doing research on the drug topamax and I stumbled on to a site that was titled "Topamax makes you dumb as a box of rocks" So that was the end of me taking that med. I am not back on diamox. the noise in my ears drives me crazy. Also light. I have always kept my house dim and wondered why I perferred i that way. Now i know. Have you heard of any alternatives?

-- posted by NC79

Top 133. Jul 19, 2006 4:33 PM

» NC79 - I Have PTC Too

In response to I Have PTC Too posted by Divinesin:
Hi, I was diagnosed with PTC in 1998. I was 19 years old. My biggest symptom was the headaches. they were terrible. I mean terrible! then i started to lose vision in my eye. that is when i finally went to the doctor. My doctor tells me to lose weight. But< I only weigh 174. I have been smaller and still suffered the headaches. My doctor always said eventually it would burn itself out (PTC)> Here it is almost 9 years later. PTC has times when it goes away. Then it will come back full blast. Keep the faith!!

-- posted by NC79