Discussions By Condition: I cannot get a diagnosis.

Living with symptoms for two yrs

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: indycakelady
  • December 26, 2008
  • 01:27 AM

Dec 28 2006 I woke up with a horrible headache, nausea, and very dizzy. I never suffered from migraines or even had headaches on a regular basis before this day.
These symptoms lasted for about three days to the point I could not walk, so my husband took me the ER - they gave me some meds to stop the symptoms (and did a CAT Scan said it was fine) and referred me to a neurologist if the dizziness persisted.
The dizziness and headache returned and I saw a neurologist (January 07) who said I was to young and healthy to be exhibiting these symptoms (I was 33) and ran full MRI's including ones of my spine. They came back fine except, one of the techs, thought they saw something in my reproductive area and thought I should follow up with my gynecologist (Feb 07). Meanwhile, all my neurologist can do is put me on a migraine diet. I see my gyno and tell him whats going on and I haven't had a menstrual cycle since Dec 07 but probably because of stress - not pregnant verifies w a test and sees nothing w an ultrasound or on the MRI that the tech may have seen. But says my blood work showed high levels of prolactin and said I had a prolactin producing brain tumor (gave me Dostinex)
Make a long story short, my neurologist sent me to her endocronologist who kept me on the Dostinex - I told them both this is NOT working, I am still having problems with the dizziness! I asked if the 'prolactin brain tumor' caused the dizziness feeling I was having and all I would get was I dont know. Also, they NEVER found a tumor on the MRI's or CAT Scans or EEG's.
By this July 2008 I had had it, I wasn't getting better, so I found a new neurologist...I explained my symptoms, told her I can feel when the dizziness is coming, kind of feels like an out of body experience, lasts about 10-15 seconds, ect and she tells me that this whole time I have been having seizures! Now I take Topomax 100mg at night (she just increased my dosage to include 20mg in the am and 20mg in the afternoon trying to control them) But we still don't know what is causing the seizures. I just had an EEG with her, and it came back fine. I don't fall out when I have them, but I do have to stop and sit or sometimes if its bad lay down, just start to feel funny - kinda outta body/ deja vu, then dizzy in my head and it lasts about 10-15 seconds and thats it. I've been researching seizures and I haven't found any that sound like mine - so now I'm not even sure if I have seizures, I know there are a lot of different types of seizures, but I would like to put a name to mine to start coming up either a treatment or heck if I have, find a way to live with them because right now I'm having them about 3 or more a week. And if it's not seizures I want to know what it is.
Thank you - sorry so it was so long! lol

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