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...

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auniecoley 05/03/2011

Ok so I was just on and 8 day round of Prendisone, while they switched me from Propranolol to Amyltriptoline. While I had some "speedy" side effects from the steroids, my HA was almost completely gone. I had my first 4 pain free days since the end of January. Steroids ended yesterday and today I'm wiped out. I feel the HA slowly coming back. I'm freaking out. Anyone ever have this happen?

Thanks,
Nicole

Cath278 05/03/2011

Oh dear Nicole. Yes, I was on steroids as well, but not , initially, for IIH. It was first thought I had TA( Temporal Arteritis, inflammation of the arteries in the brain) and started the with Prednisone, 60mgs. Magic! My hd was gone for the first time in months.
Only problem, was, steroids are a short term solution. They carry so many risks and eat the calcium in your bones as well.. ( I know have osteopenia in ALL my bones as a result.)
It took over 6 months to wean me off them . My neuro said , it was like a missing piece of the puzzle, steroids, for me. I was fine on them. But over time, we realized, I was going to have to up the dose.
I also put on 65lbs! which , I had to lose thru hard work.

Its an experience I would not go thru again, even with the promise of no more hds. The price was too high. Cath

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