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 apologize in advance for sounding like Debbie Downer, but I'm having a tough few days. I'm starting to have fewer and fewer good days now. I was on a bit of a roll a few months ago actually making it about 2-3 months with weekly or biweekly (pretty manageable) headaches before needing a spinal tap. Now I'm struggling with having disabling headaches pretty much weekly. My neurologist is starting to come to the realization that upping my Diamox is not working. At my last appointment in January he finally mentioned referring me to a neurosurgeon for a shunt if my pressure continued to rise. So like clockwork was in excruciating pain the beginning in February and low and behold my neuro is out on medical leave, with no one covering for him!! So I went off to the emergency room and got a spinal tap with OP of 25. I'm hoping this will convince my neuro that my pressure has risen again and it's time to send me to a neurosurgeon,
In the meantime I'm missing sooo much work. I'm a special ed teacher, and it is next to impossible to be out as much as I am. I've tried to be in school with my really bad high pressure headaches, and I'm useless. I feel so overwhelmed between the pain, and how slow my brain feels. I feel like my brain functions so slowly and I'm so easily distracted and overwhelmed when my pressure is high.
In the meantime I'm missing sooo much work. I'm a special ed teacher, and it is next to impossible to be out as much as I am. I've tried to be in school with my really bad high pressure headaches, and I'm useless. I feel so overwhelmed between the pain, and how slow my brain feels. I feel like my brain functions so slowly and I'm so easily distracted and overwhelmed when my pressure is high.
Hang in there! Let us know what the neuro says is the next step for you -
Like Reply #1, I work with computers. So, I have to focus and read all day when my pressure is high and that is not easy on the eyes or brain. Plus, I think Diamox also makes the brain slow anyway. I am on Topomax for headaches too (a.k.a. "dopomax" because it makes you feel so dumb).
But you know what? I thank the Lord for all the blessings that I do have and know I could be in far worse shape than this. So, I try not to complain too much, I am trying to stay on the path to lose weight (stress the word trying - my neuro's swear you can rid yourself of a lot of this problem if you lose) take my meds, and pray every day. That's how I'm getting through.
Moving on, I am very sorry your experiencing this, hope, hugs, and prayers your way for quick relief. The cognitive symptoms are the pits, I would take the HA over the brain drain.
Mary
Aunie how's it going today, any relief at all.
Lisa, I am with you! I know this stinks but I thank God I'm not worse off. I know the Topamax plays hell on your cognition, I couldn't tolerate it at all. We all know that IH causes cognition issues as well. I'm sorry you're missing so much work Annie. One thing I am grateful for is that lately I am working, despite pain and the other issues. Today I was off , beautiful day in Buffalo and I spent half of it in bed :(...Hate it! Wasted. Time that I'll never get back....
Nancy
Did u see amf2 post on Hopkins, I'm going.
I did. I'm considering JH as well. Nice to hear from You!
Nicole