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...
After a year of being stable on Diamox, it appears I'm having a relapse. The paps are back. Optho said it's mild, no hemmorhaging and my field vision test was normal. Nonetheless, it's back, along with the familiar ear whooshing and brain squeeze. Have an appointment with neuro in a few weeks. I know it'll be ok and tomorrow I'll get back to the business of kicking ass and taking names. But tonight I'm gonna cry, eat ice cream and feel sorry for myself.
But, I do know how you are feeling, been there a few times myself.
This wretched illness just keeps giving us curve balls
I recently got the all clear, from paps and stuff to the very next day, to discover my blood pressure problem is back full force." Unstable" high blood pressure it is now being called. What the hell!?
Any way, as disappointed as you feel, try to focus on a positive, that the Diomax simply needs some tweaking.(?) Its merely a blip, just to remind you, us, we are never in charge here, IIH is.
But I m sure, as you having been doing so well it will correct it self quickly.Try not to panic, be strong as you always have been, and meet with your neuro. It could be you just need a new game plan, after a year.
And! Thank goodness, you keep up your apt with your Optht! No time for any damage to set in.
Its the glass half full day dear girl.You will get beyond this, have no worries.
But, I do feel for you, and send warming , caring hugs to you. Cath
Lots of good thoughts coming your way - hopefully, your neuro will be able to get you back on track so you can continue to kick ass and take names!!!
Hugs -
Chris
sorry that this disease has no rules; just as we think we're doing great and are stable with taking medications or whatever, it still pops up with silent demages...guess tha'st why they say it has not cure only treatments and I even question if it has any remission especially when it hits with these curves balls ...Take care, be strong and stay encouraged
I know that LPs are not the best option. However, my neuro is amazing and has always done an awesome job. I have had 3 and had good results. I always get such relief and it seems to last for me. I'm wondering if he would consider giving me an LP and holding off on the med increase to see if that will help. We'll see what he says in a couple of weeks.
Personally I am pretty fed up with all my docs. This last one even had the balls (sorry ladies, although the doc was a she) to say that she is not sure that a LP Is even a valid theriputic procedure due to the placebo effect. I was ready to punch or spit, maybe both.
I'm sorry to hear this! But we are here for you none the less to support you and it is okay to have your moment of frustration with the ice cream and such I totally get it...been there, done that :) This too shall pass and you will get it into remission again I am confident.
TJ, placebo effect from an LP - ? WTF? UH doctors lately are soooo frustrating!!! That is the first I have ever heard of that. They should all through one of those and realize we don't get them for the fun of it, we are wanting relief!
Hugs to all
:) Mandy
"Paps" is short hand for papilledema or swelling of the optic nerves. We just think we're cool for saying it like that (and also it's hard to spell). Haha.