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378112 tn?1199897215

Mini stroke? Pseudotumor cerebri? Bad migraine? What is this?

I've always had headaches and nausea etc and never paid any attention to it. I always though it was a sinus problem and ignored it. My true problem that worried me started out 2 years ago when waking and seeing dark spots covering my eyes. Not knowing any better I went to a regular eye dr.  He sent me to specialist after specialist to find papilledema and hemorrhaging in there.  After a CT scan  they ruled out a tumor and told me it was pseudotumor cerebri.  They started me on diamox and topamax, eyes cleared up but headaches never went away.  In fact, they got worse.  All they did was give me pain pills to ease them. Now my eyes are still proven to be fine, and I'm still on the meds but new symptoms have started:  pain behind my eyes, weakness of my right arm and leg and now I have dizzy spells (more like going from sober to full drunken state in a matter of ten seconds) to the point where I can't pick up my head or move at all.  My words become stuttered and/or slurred as if I'm in the middle of a stroke!  No dr believed me this was going on until he seen it with his eyes (my neurologist, mind you)  So again, he has no clue what's going on and has just given me more pain pills to ease my troubles!!!!!  So here I am with more headaches, more eye pain (which are now getting to the point of me waking up with pink rings around my iris and bloodshot eyes???) and the weakness is continuing and the drunken spells went from one every week to  now almost everyday lasting from 5-10 minutes each spell.  Is this really from this pseudotumor cerebri????  What is going on with me?  Someone please help.  I'm young and no one in my family has ever had these types of problems.  I'm desperate!!  
15 Responses
Avatar universal
my daughter has pseudotumor and she had a shunt put in and that saved her from going blind. She still has many many problems from it. If you want to know more just let me know. I can tell you all about it. Some of your symptoms seem like what would have happened to my daughter if she didn't have the shunt in right away. Has anyone mentioned this to you? I think it saved her but it sure did cause some other trouble. write back if you want to know more, I have been through all of this for 3 years now. Good luck
378112 tn?1199897215
Any help you can give would be greatly appreciated.  My email is ***@****
378112 tn?1199897215
Sorry lol same screenname as here but at Y a hoo
Avatar universal
Hey there- just checking in. have you had a shunt put in?
Avatar universal
I will try to write you an email tomorrow. I have to get my dad to the hospital for his post aneurysm angiogram at 7am so I'll write all about pseudotumor tomorrow.I'll send it to your email @yahoo
Avatar universal
Dear Jackie,

I had pseudotumer cerebri in 1994, it usually happens to overweight women before the age of 50.  I can't say I was that overweight at the time, in fact I was on an exercise regimen and losing weight, the PTC was a complete mystery. Like you I had black spots in front of my visual field. The docs found papilledema. At first they thought I had a brain tumor but the MRI didn't find any tumors - did find a couple of white spots - presumably from migraines. I went on Diamox for about 8 weeks. However I also have a hx of dizzy spells, migraines, etc. but it was not from PTC that I know of. You have some really strange symptoms, like the pink rings around the iris?! That sounds like iritis.  Have you gone to an internist or rheumatologist and done some bloodwork, like an ESR, ANA, etc.? You have to rule out some kind of autoimmune disorder like lupus also that could affect the brain and eyes. If thats all normal then your neurologist should keep close tabs on you and your symptoms and follow up with -...I know..sigh...more tests.
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