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

loveyalots143 12/02/2013

I am having trouble remembering, or making sense of, head pain. As I've been whining on here about, I've got a doozy and can NOT get rid of it. With Thanksgiving (hope everyone had a great one) and family I tried to just push through it (bad idea). I've done all the normal tricks - even the ones we aren't supposed to like drink coffee, to no improvement. Last night I even broke down and took one of my strong pain pills to push it out - only to wake up this morning and it is getting steadily worse as I type. I am trying to wait until tomorrow to call the neurosurgeon because there's also some swelling in my abdomen and I'm having vision and balance problems, and he won't be in until tomorrow.

Enough whining from me though - my question is, are typical IIH pains positional - different from laying down to standing up? This thing isn't changing, except in severity, and is waking me up at night, but I remember one of my doctors saying something about the difference between IIH pain and a migraine is positional but I can't remember which...

Thanks for any input,
Kristena

magnatomamma 12/02/2013

Hmmm, well for me IIH pain was worse after laying down. I usually slept a little propped up. And would get better about mid day after being upright. But I also got severe pain while laying on the back of my head, especially to the right. I didn't find out until many months later that I had an inflamed occipital nerve. My headache definitely got worse in certain positions. I think the occipital pain is an effect of the constant headache, and tightening of the muscles around the shoulders and neck from stress. It still flares up.
Anyway, migraine is probably not positional. Do call your doctor tomorrow. If you have pain medication you should probably take it and at least try to make yourself comfortable until you can see the doctor. I really feel that the longer he pain continues the harder is is to tamp down. Also try a nice pack to the temples, or wherever your pain is the worst, and the back of the head.
Try to sleep.
Amy

SeaSprite 12/02/2013

My headaches get worse laying flat. Half sitting up and holding really still works best for me, head pointed straight not left or right. My back and neck need to be pretty straight and aligned. I need a better solution because pillows piled up and/or a wedge thing isn't doing it.

One of the ways I can tell between a migraine and an IH headache is what coffee does to it. Better, migraine. Worse, IH. And then there are the times I have both headaches at the same time.

Do you have an emergency pain management plan with your neuro? Anything for self-management at home? (other than narcotics) Please take care of yourself and I hope you feel much better tomorrow.

loveyalots143 12/04/2013

Well, here's the update...I am in the hospital. The good news is all the Ct's came in good - there's a small pocket of fluid in my abdomen but everything is attached like its supposed to be. My head is still Killing me, I am way off balance, and have ridiculous brain fog. I'm not sure what to expect tomorrow, other than another dr coming in for a consult - any suggestions, ideas for me to ask about would be greatly appreciated. I don't understand how I was doing so well and now everything has tanked...

Kristena

mary1973 12/04/2013

You have shunt? If you do push em to check, check, re-check.

deleted_user 12/05/2013

While I was in the hospital getting my diagnosis, one of my nurses explained that lying at an angle of 20-45 degrees is optimum to minimize positional pressure.

Once I let her adjust my bed, I was finally able to get some sleep! And bending over always messes me up, still.

loveyalots143 12/05/2013

Good (?) news - I'm home!!! Apparently my brain cells are wiggling out which is causing a return of IIH symptoms. Between shunt surgery, medication changes, and such my brain is on overload - at least that's the way I understand it. What does this mean? That even though I have been all checked out, it's just going to hurt and I'm going to have odd neurological symptoms for the next three to four weeks. I was given narcotic pain meds to take as needed, and told to try Not to over stimulate my brain with activity as this will only cause more brain fog. Anyone ever heard of any of this?

Thanks a bazillion,
Kristena

Taleema 12/06/2013

Wow.. .well I am not diagnosed with IIH, but I can definitely relate to sleeping reclined as the most beneficial thing I can do and avoid stimulation (loud noises, visual, people, etc.)
Good luck! I hope you are on the mend soon!!

Join the Conversation