Pseudotumor Cerebri?

[Jeangles]

My neurologist thinks my chronic daily headache that has lasted since Oct of 2006!! is due to Limbically Augmented Pain Disorder whereas I can FEEL the PRESSURE in my head and I feel that it is more likely I either have Pseudotumor Cerebri or some form of hydrocephalus - who do you think is right? I have major visual disturbances, if not permanent vision loss, double-vision, nausea, severe pain that is worse upon awakening, bending or stooping. Thanks for your help!  

[amylynn445]

My was diagnosed with PTC in '99. He was 7 and did not fit the typical patient with PTC. He was and still is thin. My first sign of trouble was when he suddenly went "cross-eyed" and I rushed him into the ER. In hindsight, the neurologist realized that his migraines that started 3 months earlier and were responding poorly to meds was an early indication of PTC.  He had to have corrective eye surgery because his eyes never corrected themselves. He had 2 recurrences. But has been fine since 2000 (knock on wood). He is autistic, seizure disorder, and diagnosed with Mitochondrial Myopathy with a Complex III Deficiency (gotta love the names of some of these diagnosis! That last one is a mouthful!). After his corrective eye surgery he has had 20/20 vision ever since. He also gets MRI's every 6 months for his Chiari I Malformation.

[kiele]

Hi- I just read your note to Jeangles--I am 35 yrs old and could stand to lose wt too! I went to eye md for check up-no complaints--and was told my optice nerves where swollen and had a MRI which was Normal and a lumbar puncture that had a opening pressure of 22-(which one doc says is ok and another says is high?) I had tons of blood work which thank God is all ok! I do have some headaches but usually advil will take care of them, I have a 1 yr old and 4 yr old and do not want to go blind!!! what treatment are you on? and how is your vision?
thanks Marsha

[Susie1978]

I decided to post because I was diagnosed with PTC about 3 years ago. I had sever pressure in my head and permanent vision loss due to it going undiagnosed for so long. I am a 29 year old female who suffered for years with debilating head pain before an er doctor diagnosed me. I just wanted to let you know you are not alone and if you need someone to talk to about PTC or have questions I'll help as much as I can.  Although it is true that most that suffer with PTC are very overweight  I am not...I can stand to lose some weight but a number of doctors have told me that I am not "fat" like most PTC patients. That was their words. So you do not have to be extremly over weight to have PTC. I hope that you begin to feel better soon.               Susie

[Vanessa Lacuesta]

Hi,

Pseudotumor cerebri is usually associated with obesity especially in young women. Do you have any weight problems?

I suggest you seek second opinion.If the headaches are associated with straining , coughing and are aggravated by position such as stooping or bending then you may need further assessment.Was a lumbar puncture indicated? Were your eyes assessed?

I also suggest you seek an opthalmologic consult. Increased intracranial pressure may present with visual symptoms and this may be seen in funduscopy ( examination of deeper eye structures).

Pseudotumor cerebri is given as a diagnosis when all other possible causes have been ruled out.