Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Good morning to all!
My husband was recently diagnosed with pseudotumor cerebri although several doctors have told him that this is probably not the case, mainly due to the fact that pseudotumor is rare in men, especially men that are not overweight. I was wanting to know if there are any men here with this disease and if you could tell me about your early symptoms. I am also looking to find a good doctor that may specialize in this disease, no matter where the doctor is. I am willing to travel wherever I need to in order to help my husband get the help that he needs. thanks in advance!
My husband was recently diagnosed with pseudotumor cerebri although several doctors have told him that this is probably not the case, mainly due to the fact that pseudotumor is rare in men, especially men that are not overweight. I was wanting to know if there are any men here with this disease and if you could tell me about your early symptoms. I am also looking to find a good doctor that may specialize in this disease, no matter where the doctor is. I am willing to travel wherever I need to in order to help my husband get the help that he needs. thanks in advance!
Does his head hurt worse when lying down? History of frequent migraines or other headaches? New onset of tinnitus in one or both ears? Sensitivity to light or sound? Change in vision? What led him to the doctor - headache? What kind of doctor made the diagnosis? Hope he finds some relief soon.
Others should be along soon and may be able to recommend a good doctor; in which state do you reside?
It seems we live in the same area; I am in the Knoxville area. First, I am a 45 year old non-obese male who was diagnosed in 2012 with PTC. At the time, I was 175 lbs at 5'10" tall - not obese. After diagnosis, I eventually wasted away down to 155 lbs; I was so sick and nauseated I could not eat. First, let me say that you have access to a couple of really good neuro-ophthalmologists at Vanderbilt. I saw John Bond personally and had correspondence with Patrick Lavin, who was very interested in hearing from a male with PTC. Also, Johns Hopkins has a CSF disorders group. I contacted Dr. Moghekar (http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/hydrocephalus/team.html) via email and spent several days at JH. Anyway, in my case, the IH was caused by a round of Levaquin, an antibiotic. Fluoroquinolones (Cipro, Levaquin), Accutane, Doxycycline, and any drug that can mess with hormones (Propecia, for instance) have been implicated in causing IH. I can give medical journal references if you are interested. For me, my first symptom was a testosterone crash, although I suspect that that was caused by the Levaquin and resulted in the IH. That is speculation based on research.My second major symptom was visual disturbances. Acuity is not usually affected, and for me it was a lot of floaters, dim vision, color abnormalities, and a bunch of other stuff. I call it visual garbage. For males, headaches are not usually a presenting symptom, which causes doctors to dismiss PTC as a diagnosis. You can only ever diagnose this with a lumbar puncture. Be persistent if you truly believe this is what is causing your husband's problems. I will be happy to answer any questions and give you more information. This has been a three year journey for me, and I spent many hours researching this. Make sure your husband gets any sleep disordered breathing treated. My bipap machine has been my best friend!!!!!!!!!!!! Make sure it is a bipap and not a CPAP. Breathing out against pressure is exacerbating, not helpful. Sleep apnea, on the other hand, is a killer. Diet is huge. Since you live close to me, I would be more than willing to meet your husband and talk as well. That is a comfort level thing for you all to decide, and I am totally willing to answer what I can on the boards or through email. I just wanted to let you know your husband is not alone. Non-obese males with IH are out here suffering, too.