Discussions that mention tylenol

Brain & Nervous System Disorders board

Hi littleck,

Welcome to the boards. I'm sorry to hear you have this and know it is quite frightening in the beginning. My daughter also has this condition. How long have you been on the diamox? Keep taking it and drink lots and lots of water. If the diamox doesn't work, they might want to put a shunk in your spine to remove the fluid weekly or bi weekly. That is really something you want to avoid.

My daugther was 10 when she was diagnosed and it was really rough. Her grandfather died from a brain tumor so when we first heard the term, we freaked until they explained it to us. We initially went to Nemours children hospital but they treated her like a guinea pig and I got her moved to a private Neurosurgeon that is specialized in teens. She is a giant so she has to have doctors that are used to adult sized patients. The diamox works pretty well most of the time. She has been on it 3 years now and still gets horrible headaches and has to take Tylenol 3. That is the only thing that will work that we have found so far. Another doctor tried Maltrex which is a migraine medicine and it didn't work at all. Another doctor told us it wasn't the right med for pseudotumor cerebri anyway. She sees yet another new doctor next Tuesday due to her last one retiring unexpectedly.

The best news is, you will outgrow this. Her optic nerves are far less swollen now so we are hopeful. Her vision is improving. If the doc tells you to take the diamox 2 times a day, DO IT! That has been the hardest for her, remembering to take it later in the day.

After some time you should be able to reduce it some. You really do need something that works for the horrible headaches though. Don't be afraid to go to a new doctor if you aren't happy with the one you have. You have to be able to talk to them and tell them everything and know they are listening and educating you at the same time.

Good luck and keep us posted. Feel free to ask any other questions. You are the only other person we have ever known that has it.