pseudo -tumor questions

[7thStranger]

After several tests over 3 years and many doctors and diagnosis i was told i have a pseudo-tumor. I was given Diamox which i have taken for 3 weeks,. its seemed to make it worse to be honest. I have been losing some weight and taking Lisinopril and HCTZ. What else can i do? Should i ask for a shunt when i go back in 4 months.?

[Dr. A. Srivastava]

Hi, Thank you for your question. Most common symptoms in Pseudotumor cerebri could be headache, nausea & vomiting, and vision loss due to the raised intracranial pressure. However, obesity and other diseases could be additive factors in raising the intracranial fluid, therefore it is essential to get these factors evaluated with the doctor. Few medications may be used to reduce fluid buildup in brain and to relieve pressure. Weight loss and cessation of other drugs especially steroids may lead to improvement in your symptoms. Surgery such as therapeutic shunting to lower down CSF pressure may be required in few of the cases. Hope this information proves helpful to you. Take Care & Regards!!!

[Cath278]

Hi.Sorry to hear that you have been on the merrygoround that goes with the diagnoses of IIH/PTC.Its new name is Idopathic Intracranial Hypertention.It is a  rare illness and not all drs are up to date with it and its findings.
Can I ask , how did they decide you had IIH? Did you have a lumber pucture? What was your opening pressure?Do you know if you have Papillodema? That is, swelling of the optic nerve?

Diamox, the demon drug.....Yes, I know all about it. Im afraid to say, that what you are feeling is normal, when you take Diamox. It really does make you feel like crap but it does help at keeping the pressure down. Its a necessary evil. Stick with it, it does get easier to deal with.usually about 6 weeks.
Think very carefully about getting a shunt! it is not always the cure you hope it will be.I have a VP shunt , still have headaches and high pressure.Now, it does work for most people but there are quite a few for who it didnt.

If I can help you in anyway, please just pm me.I have this illness for a few years now and know a lot about it and would be happy to help if I can. Good luck! Cath278