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...
28632
mandasager@...
mandasager
Oct 22, 2009 6:47 pm
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...
28633
lpriestly@...
kettra
Oct 23, 2009 12:39 am
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...
28634
Wendy Lameira
gypsydog14
Oct 23, 2009 3:07 am
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...
28635
Janet Kniep
jkkniep...
Oct 23, 2009 4:47 am
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...
28636
tecjb
Oct 23, 2009 2:17 pm
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...
28637
Shannan Bridgewater
shannanh1
Oct 23, 2009 3:03 pm
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...
28638
SherylRB@...
sheryl.busch
Oct 23, 2009 7:04 pm
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...
28639
Wendy Lameira
gypsydog14
Oct 23, 2009 9:44 pm
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...
28640
softndark2
Oct 25, 2009 5:30 am
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...
28641
cannon
pompom37307
Oct 26, 2009 8:51 pm
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...
28642
shgray76103
Oct 27, 2009 11:38 am
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...
28643
SherylRB@...
sheryl.busch
Oct 27, 2009 4:02 pm
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 ...
28644
Daniel Mcneill
DE_McNeill
Oct 28, 2009 11:17 pm
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...
28645
Daniel Mcneill
DE_McNeill
Oct 28, 2009 11:26 pm
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...
28646
Carol Goodness
cagoodness
Oct 29, 2009 2:49 am
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...
28647
Daniel Mcneill
DE_McNeill
Oct 29, 2009 3:45 am
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...
28648
SherylRB@...
sheryl.busch
Oct 29, 2009 3:58 am
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...
28649
jwtooblsd blessed
jwtooblsd
Oct 29, 2009 4:47 am
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...
28650
starrieangel03
Oct 29, 2009 12:06 pm
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...
28651
Kenyon Smith
kenmuf
Nov 5, 2009 1:29 pm
Hiya ptc family, I ran across a devotion for today that is helpful to any of us ptc'ers who are spiritual; Here's the link: ...
28652
bbailey1804924
Nov 11, 2009 1:32 am
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...
28653
chdblwinnr@...
Nov 11, 2009 3:15 pm
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...
28654
jwtooblsd blessed
jwtooblsd
Nov 13, 2009 1:45 am
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:...
28655
Kenyon Smith
kenmuf
Nov 13, 2009 1:22 pm
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...
28656
Dee
msdelite143
Nov 17, 2009 2:45 am
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...
28657
mwsimms@...
mwsimms
Nov 25, 2009 7:53 pm
I have a lumbar shunt in the base of my spine since 1991 and it still works well ... From: "Dee" <msdreamylatina@...> To: ptc@yahoogroups.com Sent: Monday,...
28658
Anji
anjihar
Nov 26, 2009 2:32 am
Answers to anything on the go, for free! Text 242242 Call 1.800.2chacha (224-2242) ... From: IHRF eList Manager <contactus@...> To:...
28659
msdreamylatina@...
msdelite143
Nov 26, 2009 3:42 am
HELLO AND TY FOR RESPONDING I WILL BE GOING TO THE NEURO SURGEON ON MON AND WILL HOPEFULLY GET SOME ANSWERS. THANK U ... From: mwsimms@... To:...
28660
Amy Denton
tripgirlsand1
Nov 26, 2009 3:44 am
I have a VP shunt and have had ti since Jan 2003...
