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...

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loveyalots143 02/01/2013

Ok, so some know a little of my background others not so much. I do not say this to be conceited but I'm not a stranger to pain, I've had 14 surgeries on my feet. And truthfully, I know the pattern and how to make it better. I don't with this. Am I being impatient to think I should not have this squeezing vise on ky head all the time? Is it unreasonable to not want to cry after I sneeze? I'm not trying to play a poor me song here but I'm working on understanding and everyone is telling me these medicines should be taking away these pains and things like falling down or the inability to feel the piano keys at times (and on and on) and they aren't. I guess my main question is, I am used to a certain pattern. I hurt my foot, wrap it, wait six weeks, it's better. Am I so used to that I am being impatient with this? Sorry to be a downer, just trying to be real and understand what in the world I'm battling against.

Kristena

deleted_user 02/01/2013

I am newly diagnosed though I have been dealing with symptoms for many months. I also feel impatient. I was so relieved to finally get a diagnosis because I thought the doctor would fix it and I would move on with life.

I hope there are better days ahead for you... for all of us.

~Nichole

HHugel 02/02/2013

I would love to tell you it won't be long. That's what I thought too. I was dx 2 yrs ago and had a shunt put in a yr and half ago. It still hurts to laugh, sneeze, etc...along with constant daily headaches and photophobia. Everyone reacts differently though, for some its months and others years. One day they will figure it out and we can all have our lives back, that's what I try to keep telling myself.

loveyalots143 02/04/2013

There does come a point though that we have to be real, well at least I do. I am so sorry for all the whining in this post, gee whiz! Truth is, none of us know whether or not we will be able to walk across the floor without falling in a day. And that is with or without IIH. So even though I hurt like crazy and am not sure how I'm going to get to the living room, I am still awake on a Monday morning and that's good enough for me.

Thanks as always for the encouragement,
Kristena

deleted_user 02/07/2013

I was just wondering about this today myself. After the LP, I did have about 3 weeks of 'happiness', but then the pressure started to build again, a little at first, then progressivly more. I think the Diamox is keeping it from going to a full blown level 10 pain, but I have the level 2 to 3 creaping up higher and higher headache every day and was wondering if this is what life will be like.
Will life always be a headache?
Will life always be earplugs?
Will life always be sunglasses?
Will life always be pharmacy trips and multiple meds?
Will life always be . . . um I forgot . . . short term memory loss?

deleted_user 02/17/2013

hang in there. with the right therapy it will get better. Every one is different in how long and how much better. I wish you the best.

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