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!
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.
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
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?
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.
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