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'll apologize in advance if this post turns into a venting session. I had two vp shunt revisions within 5 days of each other at the end of October. I was someone who had incredible success with my vp shunt. I felt amazing, and very rarely had headaches. I was able to be in school, I'm a special education teacher, with no problems. My first "bad" headache resulted in the first revision, and then 5 days later revision #2. I haven't recovered well at all. I've had chronic headaches since the last surgery. I've been to my neuro and neurosurgeon, and been told to give it time. I'm so sick of being sick! I know I'm preaching to the choir about feeling awful, I'm just wondering how people deal.
I am going to see a neuro opth on Friday. My neuro opth was a very pompous man that, didn't dilate my eyes the past two times I saw him, because I was his last appointment. Luckily I have found a neuro opth that has a special interest in "pseudotumor". I've tried the stay in bed, the force yourself to get up, the distract yourself, and I'm just feeling so defeated by this damn disease.
I haven't been able to drive, or go back to work. My job is such a huge part of who I am, I can't imagine that being gone. Unfortunately I think my job is the next thing to go. I'm currently on 100mg of amitriptyline every night, but its not doing the trick. I still have headaches 5-6 days of the week, and that's me trying to be optimistic. I decided to join weight watchers online, thinking hell maybe it is a weight thing. I've battled with weight my whole life, but none of my Dr.s has said that this was a factor in my case, but at this point I will try anything.
Thanks for listening,
Nicole
I am going to see a neuro opth on Friday. My neuro opth was a very pompous man that, didn't dilate my eyes the past two times I saw him, because I was his last appointment. Luckily I have found a neuro opth that has a special interest in "pseudotumor". I've tried the stay in bed, the force yourself to get up, the distract yourself, and I'm just feeling so defeated by this damn disease.
I haven't been able to drive, or go back to work. My job is such a huge part of who I am, I can't imagine that being gone. Unfortunately I think my job is the next thing to go. I'm currently on 100mg of amitriptyline every night, but its not doing the trick. I still have headaches 5-6 days of the week, and that's me trying to be optimistic. I decided to join weight watchers online, thinking hell maybe it is a weight thing. I've battled with weight my whole life, but none of my Dr.s has said that this was a factor in my case, but at this point I will try anything.
Thanks for listening,
Nicole
I'm pretty new to all this so I can't offer much beyond a word of encouragement. One thing I am learning about this thing is everyday is different, some days good, others we don't even want to talk about. I've seen this on Facebook and have considered doing this even for the rough days but every good moment or day write on a piece of paper what was good and place it in a jar, then at the end of the year, or I would suggest on a not good day, take out those papers and read them. We all have junk days here, but sometimes even on our junk days we have a positive moment.
You are not alone and feel free to vent anytime,
Lots of hugs
Kristena
Don't give up hope though on finding something that works for you and good luck trying to lose weight and maybe that will help you it doesn't help everyone but it might help you.
I've found that when I ask the docs more technical questions, they will actually start to think "with me" more. I had one NS change his mind mid-appt after I asked a question that led him to think more on a plan he had for me. "I've been wondering why my shunt would be leaving me with daily headaches and the inability to drive/work since it worked so well for so many years - what do you think could be causing it?"
Maybe?
Know that you're not alone. *hug*