When is enough, enough with Psuedotumor Cerebri?

[Nichole79]

My sister has been diagnosed in January with Psuedotumor Cerebri with Intercranial Hypertension. She is 21 years old and lives daily with a headache. It feels like a lot of pressure on the back of her head. She has been to 3 different neurologists and no one seems to be able to help her. She ends up having a spinal tap (she has had 4 since January of this year 2008) and it may relieve the pressure but, it never makes the headache go away. Do you have any suggestions on what she should do? She has been taking topomax (topamax) until a week ago and now they put her on Diamox 500mg twice a day, Phernergan 25mg to take with the diamox 2 times a day, and kilonopin(spelled wrong) to help her sleep at night. She rarely gets sleep. Only if she breaks down and goes to the ER to get a shot of Newbain. It is the only drug that will allow even some of the pain to go away. We are begging for someone to help us.

[angelbabydoll]

I also have psudotumor ceriberi. I have had it for several years now. My nerologist gives me topamax and Diamox too. When I get a headache I immediately take either a hydrocodone 7.5. or a Ibuprofen 800mg. the Ibuprofen seems to work the best and the fastest for me. If she can take it as soon as one startsit will help even better and faster. Its not easy going through it. tell her she should also see about maybe a shunt? a Nerosergion is the best person to talk to about that.

I hate spinal taps. but they help for a little bit anyways. try those two meds. I hope they work and hope she gets better!

[DrNoopurMD]

Hi,

Thanks for writing in.
The treatment of pseudotumor cerebri is by taking medications like diamox and repeated drainage of fluid by LP. However in most of the cases the symptoms do not subside by medications alone. Sometimes it may take several months to couple to years to completely resolve the condition.
It is important to remember however if the vision is getting impaired, patients may require shunts to lower the CSF pressure.

[anc8469]

Hi, my name is Ashley and I was diagnosed with Pseudotumor Cerebri  when I was 12. I'm 15 now and I've had 15 shunt surgeries since then and 30 something spinal taps. I'm not overweight and I don't fit into anything about why I got this disease. I was on diamox for awhile and I was on 500mg twice a day. I lost like 20 pounds from it also. It helped but it doesn't help if I don't have my shunt working.

[random_girl]

Hi,
   I also have PTC and have for about 2-3 years now. I am now 17 and I just recently have been getting daily headaches that keep me down constantly. I was on Diamox and that did nothing and now I am going to Topamax to see if that helps. I know it's hard aving this and it must be horrible for your sister. The only thing that works for my headaches is Vicoden but then I get really dizzy and tired. If they get too bad though I have to go to the ER and get morphine but I don't like how that makes me feel either. Is anything working for her now or is she still in pain?