Hello... I sent you an email not too long ago. I forgot to tell you. If you would like more info about PTC (pseudotumor cerebri), go to http://groups.msn.com/pseudotumorcerebri
This MSN site has lots of info and there are many of people there that would be willing to answer your questions.

http://groups.msn.com/pseudotumorcerebri

Hi, I too have just been diaganosed with PTC as of August of this year. In the beginning I was very tired, and nothing seem to help my headache. My primary care doc first thought it was a migraine until, i started getting the halo effect with my eyes, my doctor then sent me to neuro opthamologist who prescribed diomax and that has helped, i am now looking into getting the gastric bypass surgery cause the only way for this to go away is too lose weight, im going to be honest i weigh 345 and am 30 years old and do not want to go blind. ask your pcp if he can give you something for the headache like a migraine medicine now i only take iburprophen 2 times a day and that seems to help me. I hope this has been some help to you.

I completely agree when I was diagnosed with this condition my cranial pressure was so high I was in a coma and it is the most frightening thing i have ever had to come to terms with.
I have had 64 Spinal Taps/Lumbarpunctures and I am only 19. As well as this I am not overweight or was I on the pill when I was first diagnosed with the condition.
I was on steroids and other medications to try and combat the damage to my eyes as the condition had actually made me completely blind in my left eye and partially so in my right. However, I am now living my life as a 'normal person', if there is such a thing!
The best thing I found to combat the fatigue, the deafness, the blindness and the feeling that I was not actually alive is to loose weight. I stuck to a fruit and veg only diet for a while, to be honest though feeling as I did I didn't want to eat anyway. I was not overweight but it still worked. I found a dairy free diet helped with the migraines as well.
Unfortunately the spinal taps have damaged my back so I now see an osteopath but I am still unable to excercise due to the pain. I have had the condition for four years now and everyday it gets a little bit easier and a little less scary. Yes it will never completely go and the migraines often come back and my sight gets blurry agin but I have only missed 15 days off College/Work in the last two years.
For all those out there.... take a deep breath, it will get easier. If anyone wants any directly personal advice fel free to contact me as I have been through it all and had numerous arguments with doctors about what I thought was best in comparison to what they felt. Remember they may have the medical experience but you know your body better than them, don't let them boss you around, instead listen and discuss ideas and options.
Take Care.
xxSarahxx

Hi Nekota. When you were diagnosed with PTC, did the Dr.'s perscribe you a medication? What medication, and how much? Did you have the severe fatigue before you started the meds? If you were perscribed acetezolamide, it's possible that it's causing the fatigue. It's a strong diuretic and you need to make sure that your electrolytes are balanced. The medication depletes your body of electrolytes. I drink LOTS of water and gatorade. You should also be sure that your Dr. is monitoring your liver and kidney function regularly. (they do this through blood draw)I would recommend that you keep a journal of your symptoms. Times, severity, and what may have triggered them. It's quite possible that your fatigue is due to you simply being dehydrated. Water and liquids are key when taking acetezolamide. As far as not being able to get many answers from your Dr., you're not alone. This condition has not be widely researched. Treatments are minimum. You should take as much time as you have and research the internet about PTC. It will help you better understand what you are going through, and how to communicate with your doc. Other known names which you will find more info under, are Intracranial hypertension, benign intracranial hypertension, and idiopathic intracranial hypertension. Best of luck to you, and I hope you get some answers.