I have been diagnosed with Pseudo Tumor Cerebi roughly 2 years ago (due to my weight and being on bith control). I had an MRI (which was normal) and a spinal tap(which they said was in the higher, normal range). I was prescribed Diamox 500mg. They worked wonders (but the manufacturer has since discontinued Diamox in Canada). Since then I have changed specialists. The Doctor I am seeing now, seemed a bit hesitant that I do actually have this condition. She has not scheduled any tests, other than a field vision, which I have done 3 times. It showed that my left eye is the worst. I was put on Acetazolamide 250mg. It took my body a long time to adjust to the amount I was taking in one day. I’m now taking them 5 times a day, and feel that they aren’t doing much to help me.
The past few days I have felt very tired, can’t think straight and have had reoccurring migraines that range in intensity. I am worried that these migraines are part of this condition. That is how it all started for me, I was very sensitive to light and could hear swishing in my ears that wouldn’t go away. I don’t get the swishing anymore (thank goodness)
I am so confused. The medications aren’t working much and have been getting migraines. Also, when the new specialist seemed doubtful that I have this condition. Could it actually be something else?
Dr.Sinuhe Answers:
Pseudotumor cerebri, or idiopathic intracranial hypertension (IIH) in brief, is a condition in which causes symptoms of elevated intracranial pressure but because of no obvious reason. It thus mimics symptoms classically caused by big intracranial tumors, therefore the name “pseudo”tumor. The diagnosis is not always easy and not always even crystal clear.
IIH most often affects obese women in their 3rd decade. It is frequently self limiting but relapse is common. The major danger from IIH is visual loss (which may occur early or late, may be sudden or gradually progressive). Treatment is therefore directed towards preventing and detecting this. This is the reason you’ve repeatedly had and will/should have vision field tests.
Typical treatments include Acetazolamide is the drug of choice (Diamox is the same thing, but possibly the one you initially were having was a slow-acting version). If it does not help, furosemide and steroids can be helpful. Also, it seems that losing weight is effective, although it is, in general, seldom accomplished or sustained, even when vision loss is the option.
In cases refractory to means mentioned above, surgery (often a shunt) should be considered. It is impossible for me to try to second guess your doctors but possibly the second one was hesitant about your diagnosis, because you’re lacking one of the hallmarks of IIH: elevated intracranial pressure (measured through spinal tap), which should be above 20cm H2O.
So, can it be something else? Although IIH first comes to my mind also, yes, it can be something else. The options are numerous, although even rarer. Although it is a relief the MRI was normal, sometimes MRI is done again to rule out occult tumor (which might not have been visible in the first MRI).
As a self - treatment, you should give your best shot to try to lose weight but also discuss again with your doctor about the diagnosis - which may well be the right one.
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