Discussions By Condition: Brain conditions

Pseudotumor Cerebri

Posted In: Brain conditions 37 Replies
  • Posted By: Anonymous
  • September 7, 2006
  • 06:58 PM

My name is Jane and I was recenty diagnosed with PTC in January of this year 2006. If there is anyone out there with the same condition as meit really would be nice to talk and get to know eachother a little.

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37 Replies:

  • Hi, I was also diagnosed with PTC
    Anonymous 42789 Replies
    • September 15, 2006
    • 01:25 AM
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  • I was diagnosed this past May, while I was 3 months pregnant.
    Anonymous 42789 Replies
    • September 15, 2006
    • 01:26 AM
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  • I was diagnosed with PTC in 2002 while I was 7 weeks pregnant. It has gone away, but I still suffer from headaches. I would love to talk to you.
    streffy 1 Replies
    • October 2, 2006
    • 02:16 PM
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  • My name is Jane and I was recenty diagnosed with PTC in January of this year 2006. If there is anyone out there with the same condition as meit really would be nice to talk and get to know eachother a little.Hi! My name is Jackie and I have just bee diagnosed with PTC (Oct. 2006). How are you doing now?
    Anonymous 42789 Replies
    • October 15, 2006
    • 09:49 PM
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  • Hello, My name is Brenda, and I was diagnosed last May with PTC. Am currently on medication and my vision is just about back to normal. I'll be happy to talk too.Brenda
    Anonymous 42789 Replies
    • January 29, 2007
    • 07:12 PM
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  • Hi...I have been surviving with Pseudotumor Cerebri (also known as Intracranial Hypertension) for 7 years now. Being well informed and pro active has been the best medicine for me.Also would like all to know, there is a research foundation in Portland, OR for this disease. They would love to have any and all who have been diagnosed with the disease join the patient registry. It helps them get government support to fund research so maybe eventually we can find the cause, cure, or proper treatment for our suffering!! See their website www.ihrfoundation.org
    Anonymous 42789 Replies
    • January 31, 2007
    • 05:57 AM
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  • I Have Had Pseudotumor Cerebri Since October Of 2005. I Have Had Several Spinal Tabs, Mri's, Mra's, Three Eye Doctors And I Have Changed Neorolgist Twice. Treatment Is Hard To Get And To Keep. My Pressures Always Come Back High. I Take Diamox Daily And Still Suffer Symptoms. Is Anyone Else Having Problems With Treatment Of Their Pseudotumor Cerebri? I Feel Very Alone In This Fight. I Know No One Else With This. Please If You Have Any Insight Reply Back...
    Anonymous 42789 Replies
    • February 20, 2007
    • 04:17 PM
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  • IH/PTC is very difficult to treat. Doctors like to pretend they know everything about it and that it is benign but it is not. Keep on your doctors and try to find a medicine that works! Diamox, lasix, and topamax are the drugs of choice. If they don't work and/or if your vision is threatened you may want to start talking about surgical options.
    Anonymous 42789 Replies
    • February 28, 2007
    • 09:43 PM
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  • Hi I was also diaganosed with pseudotumor cerebri this past January 2007!
    Anonymous 42789 Replies Flag this Response
  • I was dignosed with pseudotumor cerebri in Oct 05 after about 6 weeks of test and an mri's and various doc visits to figure out what was wrong with me.I had became very ill.I had a spinal tap, and was put on diamox and lasix. Now i am taking Diamox(l daily) and topamax(2 daily) and have been fine for almost 2 years.I was only 21 years old when i was became sick and i am a other wise very healty person so it was a shock to my family and i when i was dignosed with Pseudotumor Cerebri.There is hope,it can never be cured but it can be mantained!
    Anonymous 42789 Replies Flag this Response
  • Hi my name is Karen and I was dx'ed with IH/ptc two yrs ago. I run a IH/ptc message board here is the linkwww.ihsupport.proboards98.comPlease stop by the members on my board are my second family we all support one another through this rare illness.
    Anonymous 42789 Replies Flag this Response
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  • had it for 10 months now i fell like a pawn here in illinois anyone know a good doctor here.
    Anonymous 42789 Replies Flag this Response
  • Hi! My name is Jackie and I have just bee diagnosed with PTC (Oct. 2006). How are you doing now?heloow my name is luis i live in peru i haver intractable headache and nauseai had a rmi but i still do not know the results this friday i will get them my mail is amigolucho@hotmail.com please write to me and tell me how you have handled this disease. i will be greatful bye
    Anonymous 42789 Replies
    • August 22, 2007
    • 05:43 PM
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  • hi! my name is Cathy and I was diagnosed with ptc back when I was 18. I am 29 now. I have dealt with the headaches forever now. I have had 3 healthy children during this time. I have gained and lost weight. The doctors all said if I lost weight it would help but so far it hasnt. My eyesight is the same as it was when I was 18. That's how I found out was when I thought my contacts were in but found out I could see without them basically overnight. I went to my eye dr. and she started asking me all of these questions like have I been in a car accident or hit on the head. Well, I hadnt and she ended up sending me to someone else and he sent me to a neuroligist and he ended up doing test after test and could not really find anything so I was diagnosed with ptc. I have had many spinal taps and they suggested doing the shunt but at 18 i was scared and refused. So here I am now 29 and healthy but still have headaches and strange feelings in my head when I'm around alot of noise. I also still get tingling feelings in my face, fingers and feet. It's strange. But after 11 years of this I have gotten used to it. I would love to hear from other's with these issues.
    piko29 1 Replies Flag this Response
  • I've been diagnosed for quite a while, I want to say 4 years. I was diagnosed when having a routine eye exam for contacts and my optic nerves were swollen. I was immediately sent to a neurologist and he did an mri, and we tried an mra, but the machine went down. I've had several LP's and they are the best relief for me. I have been asymptomatic all this time, but after my first LP my head was so much lighter, and my neck was loose, I didn't realize how stiff it was before. Then I was put on Diamox, but way too much, I could feel everything. It hurt to walk without socks on my feet. I lowered my meds and got much better. THEN I got pregnant w/ twins. I had an LP at about 12 weeks to make sure we stayed on top of it during the pregnancy, and that was my last one. My boys are now 15 months and I've had no treatment since that last LP. But now I feel pressure in the back of my head and neck, so I've requested to be put on Diamox again. I have not seen a neuro or opthomologist for about over a year now. Hope I don't blow my eye out!!! LOL
    CIRUSH2 3 Replies Flag this Response
  • Diagnosed with Pseudotumor February 2008 My complications from this are to the exteme and my medications either didnt work or had difficulties because im allergic to sulfur. Its getting to the point that they are talking about a shunt going from brain to abdomen. My pressure readings from taps have been 390 to 450. Would love to talk with others that have same diaognosis...
    Anonymous 42789 Replies Flag this Response
  • Hi,I was disgnosed in July of 2000 almost blind by the time Dr's finally figured out with was wrong. after dozens of taps medicine allergies and 2 shunts I can now say i lead a pretty normal life aside from many side effects, Dr did not know much about this disease most of what I now know i learned VIA long nights of searching & reading, You have the best tool right in front of you. your computer , I will be glad to answer any questions or just lend an ear..
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed with PTC on Feb 8, 2008 on my daughters second birthday it is now April and i have had five LP's and am on the max diomox i can take i have been refered to a neuro sugerin and a nero opthamologist at Emrey in Atlanta. A shut has been strongly suggested but im not sure any feed back would be great.
    Anonymous 42789 Replies Flag this Response
  • I went to Emory for a second opinion, and they had me on a huge amount of diamox, and I had every nerve in my body working overdrive. Still, when I take my diamox my face goes numb and my hands and feet tingle. They were talking about doing a surgery to open my optic nerve opening more, to decrease the swelling, but I'm one of those people who don't like things in their eyes, especially surgically! After trying the massive amount of diamox (I want to say 1500mg) I went back to my neuro locally and we dicided to ween down, so I did and my side effects got a lot better. Good luck!
    CIRUSH2 3 Replies Flag this Response
  • :DI had my eyes checked a few days ago to monitor my papilledema, and suprise! My optic nerves are near normal levels. When I was initially diagnosed they were off the charts, and the Docs were suprised I wasn't already blind. I have been untreated for about 2 years, and it's resolved. I'm so happy! I still have some pain behind my eyes sometimes, but I think it might be the nerves receeding back to place, or maybe a migraine. I'll go to the neurologist in a few days to make sure I don't have to undergo any treatments or anything.
    CIRUSH2 3 Replies Flag this Response
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