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...

761 Members

8,021 Posts

0 Online

Monkeymom3 05/19/2009

I touched on this in KS's posting on Topamax but, I never got a response....so, I'll try again here.

I have been having the neck and shoulder pain we have discussed so often....but, the pain is radiating down my spine and into my lower back. It is uncomfortable to stand for any length of time, bend over, etc. Is this typical with PTC?

I have taken medication but, it barely takes the edge off. Muscle relaxers are helping a little, but, not entirely. Anyone?

- MM3

Monkeymom3 05/22/2009

It almost seems like when I'm experiencing the back and neck pain that I don't really have the HA, although I can feel some head pressure. But, when the back and neck pain is feeling a bit better I typically have a HA. Does that make sense to anyone? Is this possible? Or am I just crazy? (Don't answer that last question.)

MM3

deleted_user 05/22/2009

MM, you are far from crazy, when my back and neck are at their worst, my headaches are very very mild...I actually asked my doc about this and while he had no answers, he said that it would not seem abnormal to him since most of my pressure is actually due to flow abnormalities.

PTC does all sorts of stuff to the CSF flow, and when the pressures are higher in the back and neck it would make sense that its not in the head since the amount of fluid is fairly stable (even when its too much as in our case)

Charlotte

deleted_user 05/26/2009

MM3,

This is usually where I say, "Do you want to know the truth or do you want to feel good?"

But no you are not crazy, (at least not wrt this topic, lol) Although it has been a while I had similar experiences with neck pain vs headache pain and seldom had them both bad at the same time. Same with Tinitus. When it was bad the headache was not and visa versa.

Hope this helps or at least lets you know that there may be other crazies out there.

TJ

Monkeymom3 05/26/2009

LOL...Thanks TJ. Your posts always help.

deleted_user 06/08/2009

I have also had the neck and back pain which was relieved for a while after my shunt placement. I am wondering if I have had PTC for years causing my headaches/back pain and just wasn't diagnosed until this year.
dyminbutterfly, I also get confused, dizzy, and unable to think. I thought I was just going crazy! I am glad to hear I am not the only one.

Join the Conversation