Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Hey all so i seen my neuro today due to the fact that my headaches are getting very frequent. Well the first thing that i gotta tell u all is that i was told by the nurse practioner (i see her most) that my neuro feels its safe to take diamox up to 5,000mg a day....WTF...she does not agree with him and kept me at my 3,000mg a day but added Topamax...and advice on topamax out there for me?
Then I found out that they just recieved a new patient that was in a car accident a while back and put on alot of weight and was later diagnosed with IH because of her weight....i thought it was awesome (but very bitter sweet) to know im not the only one around here.
I am finding myself getting angry when i think to much of my IH, i start to realize how much it has taken from my life. But i am very happy i found this place to vent and share and learn. HAHA it like Cheers (everybody knows ur name) lol im wierd.
Another thing bothering me is that they brought up SHUNTS today...not saying i need one actually telling me how they try very hard not to do that to their patient. But the fact that it is being talked about worries me.....but im probably over-reacting.
Well, i hope everyone is doing great..have a great pain free day all.
Then I found out that they just recieved a new patient that was in a car accident a while back and put on alot of weight and was later diagnosed with IH because of her weight....i thought it was awesome (but very bitter sweet) to know im not the only one around here.
I am finding myself getting angry when i think to much of my IH, i start to realize how much it has taken from my life. But i am very happy i found this place to vent and share and learn. HAHA it like Cheers (everybody knows ur name) lol im wierd.
Another thing bothering me is that they brought up SHUNTS today...not saying i need one actually telling me how they try very hard not to do that to their patient. But the fact that it is being talked about worries me.....but im probably over-reacting.
Well, i hope everyone is doing great..have a great pain free day all.
Advice? Make sure you are on birth control as it is a category X drug, and just make sure you are still getting enough nutrition -- fruit/veggies, water.. as it really cuts down on your appetite and causes a lot of weight loss.
It never made me tired, the entire time I was on it, and I went up to 600 mg at one point, however, my neuro reccomended taking it at night if it made me feel tired. That way it also works as a sleep aide.
You can play with the dosing times, just talk to your doctor. If you find you cant eat at all during the day-- then take 2 at night and 1 during the day. or when you go the 100mg -- take 1 pill at night, before bed.
The numbness and tingling comes and goes as you get into the higher dosages ( 100 and up) but not everyone gets it. Its more annoying than anything. The bad taste thing, applies to more than just soda-- its pretty much any food.. its kinda a metalic taste.
I agree with the Nurse-- 5,000 mg is way to high. If you call and talk to a pharmacist, They will tell you I believe the highest reccomended dosing for a day is 3grams, which is 3,000mg.. anything higher than that can do some serious damage to your kidneys and cause kidney stones plus the possible side effects from Vit. K deficeincy.
Hope you feel better soon !