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Pseudo tumor cerebri and migraines

I am still a ways away from conclusive diagnosis. Thus far, my migraines have been diagnosed by seven different physicians, neurologists and GCPs alike, as MS, just migraines, obesity (I’ve since lost weight), pseudo tumor cerebri, a pituitary tumor, and not migraines at all. I have the hallmark symptoms of chronic migraines; with and without aura, extremity numbness, the sensitivities, the pain, the fatigue, the wanting it to end. I had a stroke in 2016 at the age of 24 affecting my left frontal lobe with no residual damage. They couldn’t connect it back to my migraines, but I awoke that morning with a banger. I took my diclofenac as prescribed later in the day to no avail. Through trial and error, prescription after prescription, I am on a sufficient dosage of Topamax, Elavil, and Depakote. However, I’ve never gotten my for sure diagnosis. I love my life at a consistent 3-4 on my pain tolerance scale. If I forget even one dose at night, I wake up at a 7-8. I feel my body becoming accustomed to the medication and it’s max doses, but fear the withdrawals that trial and error bear. Chronic fatigue and depression have become my normalcy. I’m hoping someone out there may have a similar story or symptoms and has had success with their provider. I’m at my wits end.

  1. Hi bfacio1023,

    Thank you for sharing your difficult journey with us. I can tell you you're not alone in having a hard time getting an accurate diagnosis.

    The first thing that comes to mind is seeing a true migraine/headache expert, even though you've seen multiple doctors. These doctors may be different from neurologists in that they are board certified in headache medicine, which is different than being certified in neurology. I'm currently seeing my 5th true expert and finally getting somewhere. When you get a moment take a look at these articles about how these doctors are different and how to find one; and

    Let me know what you think!

    or create an account to reply.