Patient Comments: Pseudotumor Cerebri - Treatment

What kinds of treatment, including medication, did you receive for pseudotumor cerebri (idiopathic intracranial hypertension)?

Comment from: lotus1979, 35-44 Female (Patient) Published: April 29

I too was diagnosed with pseudotumor cerebri back in 2006. I was put on a strict diet of only 800 calories a day to drop the weight. I was told if it doesn"t swim or doesn"t fly, don"t eat it because your system cannot handle it. Plus I was put on Topamax and Diamox plus a steroid. I keep reading Neurontin, I was told this is a big no-no for us pseudotumor patients, for one of the side effects is weight gain. They put me on this and I gained 12 pounds in a month. I was on 400 mg 3 times a day for nerve pain. I cannot express to you how much weight this made me gain over a period of time. I would seriously speak to your health providers about this and your pain specialist. Always check your labels about what side effect the medications they are giving you have. If any medicines say weight gain, speak with your health providers.

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Comment from: ajatch, 25-34 Female (Patient) Published: January 23

I was diagnosed with PTC (pseudotumor cerebri) back in July 2013. Soon afterwards a blood clot was found in my brain. I take 1050 mg of Diamox every day (500 mg 3 times a day). I don't have many headaches anymore, and if I do, they're muscle tension headaches. However, the lower peripheral vision in my left eye gets blurry and distorted.

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Comment from: Elizabeth, 25-34 Female (Patient) Published: January 14

I take Topamax 100 mg, 1 in the morning and 2 in the evening. I also have tramadol for my headaches during the day. I just found out that that I have papilledema that is caused by a pseudotumor cerebri, in November of 2013. I started having changes in my vision when I went to my family doctor. She sent me to an ophthalmologist, who then sent me to a neurologist. Their main concern is keeping me from losing my eye sight.

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Comment from: ryansmaminina, 25-34 Female (Patient) Published: November 04

I take Dilaudid, Flexeril and gabapentin for pain. It's really painful. It affects everything I do. The pressure on my head and left eye are horrible. Trying to eat healthy and lose weight to no avail. Wondering if there is an option of weight loss surgery to achieve faster results.

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Comment from: Liz, 25-34 Female (Patient) Published: September 25

I take Topamax 25 mg 2x a day, Neurontin 300 mg 6x a day, and Amitriptyline 25 mg 2x a day. This is every day, if I have symptoms or not. My first episode of the disease damaged my optic nerve and I had some permanent vision loss.

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Pseudotumor Cerebri - Symptoms Question: What were your symptoms associated with pseudotumor cerebri (idiopathic intracranial hypertension)?

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