Hi Kristena,

I have had nurses and other hospital staff overdisclose to me in a completely inappropriate way at all of my headache-related hospitalizations. It is NOT cool. I tried to use body language and not ask questions in effort to cut off the conversations, and when I left I sent the hospital and my doctor's office letters about how inappropriate and unprofessional it was.

I do not have any suggestions for you except to drink a lot of water, order coffee with each meal (I swear it helped me!) even if it doesn't taste very good, and remember that you are the patient and you have every right to tell the CNA or other staff that its unprofessional to tell you about their experiences. I have said "Everyone is different, and I'm going to follow the advice of my doctor."

Also, if you are worried about your sight, just keep bringing it up each chance you get. You'll know that you tried your best.

I wish you the best!

Hugs.

If its an assistant tell the main nurse. If that's the culprit, tell the doctor. Very unprofessional.

Ask her to please keep speech to a minimum, as each word is like someone hitting you in the head with a hammer. That is how today has been for me! If THAT is too subtle for her, escalate to her manager and ask that she become educated on the seriousness of your condition. Remember, most people know NOTHING about PTC, so we have to be our own advocates. I'll be praying for you!

Lisa

Thanks for the support! I am proud to say I did not end up injuring anyone, I simply did not talk much beyond what was necessary for proper care when she was there. I have good news sorta kinda - I am out of the hospital. But I still have the hard core pressure headache I went in with, I still have very blurry vision, and a new one fore is my legs feel like I'm trying to lift lead weights when I'm walking. The only thing I went in with that I do not currently experience is the cold stabbing ice pick that went down the back of my head, after a very scary to me occipital nerve block, it became a dull, cold pain down the back of my head. The meds are really messing with my thought processing abilities and slowing down reflexes. But again, I am out of the hospital. I'll be honest after today and his visit yesterday the dr became very convinced this is all stress related and everyone has stayed on the importance of releasing stress and living a stress reduced life - personally I wanted to bop them all to reduce some stress but again I'm not exactly a violent person lol. I realize everyone has stressors in their life and we should look to reduce and minimize whatever we can but good grief, I don't need to hear it from everyone! So I write all this to say I spent the last six days laying on a hospital bed for NOTHING! Ugggg!!!!! Has anyone experienced anything like this what do I do? Please help!

Wow I am so sorry. It definitely sounds like high pressure but I am no doctor. Are you taking any meds for pressure (diamox, topamax?) drink lots of water and try and rest that does help. I keep a journal of good days and bad days and up until a few weeks ago I honestly thought I had it narrowed down to triggers. Then my body went psycho on me so I am not sure what to tell you! keep pressing your doctor about the vision thing, it's to serious not to fight it! I hope you get some relief soon!
Danielle

Sorry you got sent home with no help! I know you probably dont want to go back to the hospital but I know when I was first trying to figure out what was going on and get a diagnosis, this helped me.

I was having horrible headaches and neck pain. When the ER doctor asked me if I was having neck pain and I answered yes, they immediately did and LP, thinking I had meningitis. This offered relief and little did I know then, it was the first sign that I had PTC. Maybe if you went in and told them you had neck pain and they did an LP and measured your opening pressure they would see that it was high?

The only other thing I can think of would be to go to an Ophthalmologist and have your optic nerves checked to see if they are swollen? I know this isn't always the case though. Mine are not swollen but my pressure is always high.

This disease sucks! I am sorry you are having such a hard time with it. I hope you can find a dr that will listen to you. Let us know how it goes.

Emily