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...
I haven't done a group like this before, but I figured I'd give it a shot. I was diagnosed with IIH at the beginning of this year. Headaches are really common for me (and I used to get migraines all the time, I was even on topamax when I was younger for them) so I never took that as a symptom until I started seeing double and cloudy vision that was getting worse and worse. The ophthalmologist jumped to IIH right away after looking at me (i'm 5'8" 230) and my swollen optic nerves. MRI was clear and my opening pressure was 45.
After being treated for 2 months, the ophthalmologist says my nerves are doing fine thanks to the diamox and doesn't have an answer about my ears or migraines I still have. The neurologist only looked at me once and said just to see the ophthalmologist. I've begged them to cut down the diamox as it has turned me into a complete zombie. I was on 1000 mg a day and finally convinced them to move it down to 750mg after loosing 12 pounds. I'm so tired all the time all I want to do is sleep. I get out of breath just walking up the stairs (which never would have happened to me before), and I've gone from being a super star at work, who used to put in really long (12+ hr) days, to someone who can barely make it through 4-5 hours at a time without needing to close her eyes. My job and personal life are suffering, even my boyfriend is getting disappointed that I never want to leave the house anymore. I'm still getting migraines about once every two weeks that keep me in bed for a couple days at a time.
The ophthalmologist says he won't lower anything else until I loose more weight but all I want to do is sleep. Has anyone had success getting off of diamox without loosing a lot weight? At this point I would sign up for a lifetime of lumbar punctures if I could just be awake all day.
After being treated for 2 months, the ophthalmologist says my nerves are doing fine thanks to the diamox and doesn't have an answer about my ears or migraines I still have. The neurologist only looked at me once and said just to see the ophthalmologist. I've begged them to cut down the diamox as it has turned me into a complete zombie. I was on 1000 mg a day and finally convinced them to move it down to 750mg after loosing 12 pounds. I'm so tired all the time all I want to do is sleep. I get out of breath just walking up the stairs (which never would have happened to me before), and I've gone from being a super star at work, who used to put in really long (12+ hr) days, to someone who can barely make it through 4-5 hours at a time without needing to close her eyes. My job and personal life are suffering, even my boyfriend is getting disappointed that I never want to leave the house anymore. I'm still getting migraines about once every two weeks that keep me in bed for a couple days at a time.
The ophthalmologist says he won't lower anything else until I loose more weight but all I want to do is sleep. Has anyone had success getting off of diamox without loosing a lot weight? At this point I would sign up for a lifetime of lumbar punctures if I could just be awake all day.
My story is similar, I used to be a superstar at work. Now I can barely leave the house. Today I went to church but left half way through to darkness of my home and ice packs. If this pain doesn't let up I will probably have to work from home again tomorrow or just use FMLA.
Anyway, so my doctor has me on zonisimide it doesn't make me that tired once I got used to it. My vision and PAP is fine now but I continue to have the high pressure headaches and pressure in my ears, etc. I have lost 30 pounds as a side effect of zonsimide is weight loss. Still, it has not helped my condition. If he tries to put me on diamox I will probably refuse it as the side effects I'm reading sound scary and too rough to deal with. Unless it is my last resort. Some people are on Topomax, maybe he can try that?
My Neuro Ophthalmologist is overweight so he hasn't mentioned it except finally I asked him last visit what I can do to make this go away or go into remission. He told me to lose more weight. I really only have about 15 more to lose unless I just don't eat at all. lol but I'm going to try because I'm desperate.
Is there another doctor in your area? Even if you have to travel a little ways it might be worth it. Maybe you can ask him to change to Topomax? Sorry this is such a nightmare but know you are not alone. Hang in there.
Wouldn't it show if Iron was low or is ferritin different? My Iron was a little low but he mentioned it wasn't anything to worry about. But if it's causing worse symptoms then yeah it is. :(