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Users comments and reviews on article Intracranial Hypertension: Pseudotumor Cerebri by SirGan

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Hi everyone i am a patient of this disease seudotumor cerebri. Everything about this article is true because I have to deal with all of the horific pains from the headaches and have to take Diamox every day. It is not easy living with this disease because the numorous spinal taps tend to have a disadvantaging effect on me but I'm glad I'm not the only one who knows my pain and there are other people out there who knows what I'm feeling. So together we can defeat this
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I too have PTC and have had 5 LP shunts and 2 VP shunts. I have had a lap-band in order to lose the weight the doctors seem to think was causing my PTC. I have lost 86 pounds and am a "normal" 140. Interestingly, my shunt seems to be failing despite the weight loss. I am wondering if anyone else has experienced this.
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Hi,
I lost 75 pounds, now weighing in at a 'normal' 147... it's done absolutely nothing for me. My first VP shunt failed, and ny neuro is now considering ONSF. I'm only 23, and have had 30 lumbar punctures so far. I really can't face a future which involves 6 or more punctures a year plus four different medications a day, plus the hospital stays which have so far occurred after EVERY tap because my body reacts so badly to them. The headaches don't really bother me, I've learnt to ignore them and carry on, but I can't face losing my eyesight and the irregular menstruation and hypertension are worrying as well. Just wish that there could be some conclusion to all this.
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dont feel bad, my first shunt failed within 9 days of surgery.. the complications from this c**p is too much to describe in such a small space. i have a very rare and aggressive case if ptc. i just wish it would stop already and i could go back to normal. the ptc was what caused me to gain weight.. i was 150 before. abnormal periods was my first sign. now im over 200 pounds, pregnant, and dont know what to do...
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please help.. my son had an LP shunt.. they took it out and put in a VP shunt.. but he is still having headaches.. is this common?? please help..
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I also have this disease and its not easy to live with it...it really bothers me mentally because I'm a male at the age of 20 and no way near over weight (5" 11, 185 lbs) so it really bothers me when I think about it...so far its just my vision in my left eye that has a blind spot, and I often get pain behind my eyes...I am taking the diamox and it really bothers my taste buds but hopefully we all will get through this and become healthy...god bless all of you...your not alone.
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i've been diagnose with pseudotumor cerebri for the past 14 years it's very painful specially when you have the headaches nights days having taking the diamox it's crazy, but by not taking the diamox you could go blind so you have no choice. you're not alone you have so many people with the same disease as you the most important part of it it's not a deadly disease. thank God
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Guest on 3/19
about two years of hospitalization and i'm still experiencing nearly identical symptoms as you, as well as being 19 and thin..
would you be able to provide me with more insight on your experiences? though i've had no successes whatsoever, i'll attempt to do the same..
email or whatever or nevermind
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hello, i also have it but i dont get it i am young and i get all the pains as someone at the age of 47!
I am skinny and so far havent found anyone like me i am confused
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Hello, I recently, about six months ago was diagnosed with pseudotumor cerebri. I have have extreme headaches, blurred vision, blackouts, nausea and throbbing in my head and behind my eyes. I spent about a month and a half in the hospital when i first found out where they did all the inital testing and found that my eyes weren't quite bad enough to do the surgery with the slits and of course they wanted to try medication before any sort of shunt first. Well, turns out i am highly allergic to the Diamox which is the  main medication used to decrease the pressure. My doctor put me on Topomax 200mg a day. For a while, about a month or two my symptoms got somewhat better but not great and now my headaches and blurred vision have come back just as bad if not worse then they were before. I have read pretty much all that I can find on the internet about it, which is not much and everything points to the next step being a shunt put in which often does not work well for people anyways. Honestly, i am scared of this option. I have heard and read a small amount of research stating that medical marijuana use has been proven to lower some of the pressure. I am not against it but of course it is illegal here. I am somewhat overweight but even after losing 20 lbs my symptoms are getting worse, not better. I am just curious if anyone has any insite or has experienced any of what I am especially with the medical use of marijuana or the allergy to Diamox and use of Topomax in it's place.
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