The majority of IH/PTC patients do not have shunts and are controlling their IH/PTC with medications (most commonly Diamox, Topamax and/or Lasix). Because...
I suffered from "low pressure" headaches the entire time I was on Diamox. Can your daughter tell the difference between low pressure, high pressure and stress...
75mg is a tremendously small dose. The therapeutic dose (according to my daughter's neuro) is 4000. She says that she doesn't feel like eating most of the...
Yes it’s an extremely small dose. She was started on 500mg extended release after her first lp and that one pill made her feel like dying, I’m sure it was...
I do agree that the 1 week of recovery would be well worth ridding my day of 9 pills. The very first neuro that put me on the Diamox said that the med was a...
Bless your heart! You need a shunt! I can not stand Diamox. Your symptoms don't get better and you have nasty side effects to go along with your misery. I...
I am 31 and have had the PTC diagnosis since I was 14. I have tried Diamox a million times over the years and each time, I have felt worse. The headaches...
I had suffered with PTC for over a year. I have not been on Diamox for 4 years now. I ws taking Diamox and Topomax. The combination seemed to make a big...
Worse headaches and horrible body ache describes her right now. She hasn’t been to school or work this entire week. I talked with the doctors office this...
I agree with Ocean that everyone with PTC is so different no one can base their treatment on "well if it works for so and so, it will work for me". I have 2...
My daughter’s problem with the shunts is that they kept failing on her or would become infected. She lost a shunt, on average, every 6 months. That was a...
Leslie, I am REALLY sorry to hear your sons are not doing well. Hang in there. It's hearbreaking to have to watch your child suffer. I wish I could do...
my mother took depacote for seizures. I guess thats what they give for the PTC anti seizure meds. Why won't she take it. Its better than hurting. Sometimes the...
I I made a comment a few days ago, but I have been so sick with my PTC that I haven't read all the comments, and been able to comment. I live alone so it's...
I was told 4 years ago that I had a pituitary adenoma, now a new doctor at vanderbilt says it's an empty sella, she also thinks i may have PTC, due to constant...
the only test for PTC is a lumbar puncture to see how high the spinal fluid pressure is in your back. The eyes, blackouts, and other side effects are just...
Also remember that your CSF pressure varies during the day, so a normal pressure does not rule out PTC, however an elevated pressure will confirm the ...
Hello, I've never had a shunt placed - been diagnosed with PTC since early 2002 - have done the diamox, topomax, lasix etc - and any number of anti-seizure...
Hello, I took depacote as one of the anti-seizure meds - lost a ton of hair and had tremors so bad I could barely hold a fork to eat. The side affects of both...
Well I did the dimox it did not work for me so i take 500 mil of Tompax and i have spinals every 3 to 4 months but after almost 3 years i have thrown in the...
HI Carol, I don't think you should feel like a quitter - you gave it your best and sometimes our bodies just don't respond the way we have in mind. I learned...
I implore all of you who may have had an abnormal MRV to seek an Interventional Neuro-radiologist to explore this further. We were told that our daughter's...
I am taking Lamictal for seizures and my neuro said it is a good med, even in the long run. I also am on diamox, lasix and a eyedrop to help keep fluid out of...
Wow! It's really disheartening to hear so many issues with the shunts! I'm not the sufferer of PTC, but my best-friend is. She is allergic to sulfa, a main...
Hello everyone- Hope all is well with everybody. It has been a while since I have posted on here. I had a vp shunt revision done on January 20th 2009. In...
Hey Beth, Long time no hear. I am so sorry that things are not going well for you. If there is anything I can do for you please let me know. You can email me...
chdblwinnr@...
Nov 11, 2009 3:15 pm
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Beth, I may not be in Maine or even close to where you are, but you are in my prayers and I hope that this will be the FINAL revision. Janine/Texas ... From:...
My heart and prayers go out to you Beth. I also pray for all of you suffering from this cruel illness. Love, Ken ... Beth, I may not be in Maine or even close...
HELLO ALL AM IN NEED OF INFORMATION ON SHUNTS. AM IN MY SECOND ROUND OF THIS TERRIBLE DISEASE. AM TO THE PT WHERE MY NEUROGLIST WANTS TO SEND ME TO A NEURO...
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