hi SG:
I'm going to reply to your other post also, but just quickly: YES
many here have bad ear pain. the clear fluid running out of your ears: if you have perforations in your ear drums, that could be CSF (cerebrospinal fluid) and if you have a CSF leak you need that evaluated ASAP. call your doc and ask about it. if CSF can leak out then bacteria can get in and cause meningitis.
the perilymph in the inner ear is contiguous with cerebrospinal fluid spaces and pressure can be transmitted to the ears.

also, the pressure in the skull can be transmitted down the spinal cord, as a sort of relief valve. this can cause back pain. it can also be related to pressure on nerves with pain felt in the back. I also suspect that there are issues with neck position in IIH and any change in neck position can lead to a change in spinal posture all the way down to the feet, which might cause muscular pain as the body compensates.

more on the other thread in a bit, stay posted.
and hang in there, we'll help you with all this!

If you have clear stuff coming out of your ear(s) it could be melted wax, which would mean your ear is hot. That might mean you have ear infections. Please go see your doctor to rule that out.

It could also be cerebral spinal fluid, but it's not likely it'd be coming out of both ears - but could be. It would mean there is erosion and a hole in your bones, and it would also mean your eardrums are perforated so the fluid could leak out. Your regular doctor could see perforated eardrums. It takes a special MRI (or is it CT?) that measures the thickness of facial bones to uncover a hole in the bones that let the csf leak out.

Back pain is really common in here. I have upper and mid back pain that nothing relieves. For me the key to everything is keeping my csf pressure down as much as I can.

Please do go see your dr. and have your ears looked at.

How are you feeling today?

I forgot to say that I don't know why, a warm hot water bottle or heating pad helps my IH ear pain. Maybe it goes away on its own and the heating pad is just comforting, I don't know.

I'm hoping your pain is better today and you were able to see a doctor yesterday.

I experience severe ear/neck pain however I've never had the clear fluid coming out of my ears. On thing that has really helped me with that is hot showers. I tend to stand directly under a very hot shower with the water hitting me directly on top of my head and running down my face. I think positive thoughts (which is hard to do!) and I concentrate on my slow breathing. Usually 15-20 minutes of that helps a lot.

As for the clear fluid I would definitely check with a doctor about a double ear infection bc my son has had that experience and it sounds similar. Always worth checking to make sure that it's PTC related.

I hope you're feeling better =)

My ear, neck and back pain is all gone away since I had my LP yesterday morning :) :) :)

I get lower back pain and I have the same problem as you. I also used to get sharp ear pains, but then I talked to my doctor about it and found out that it was a really bad ear infection. I highly advise you to see your doctor about your ears. My back pain is still there but my doctor says that it is just a side effect of the excess pressure.

Never mind about my last comment then and congrats on your pain going away I hope you get lots of rest and recover well from your LP

soccergirl, what did the doc think of the clear fluid from your ears? did that stop since the tap? that would be telling.

EVERYONE PAY ATTENTION TO THE MOST IMPORTANT LESSON HERE IN SOCCERGIRL'S LP PROCEDURE:

HER OP WAS ONLY 20!!! AND THE TAP MADE HER FEEL SO MUCH BETTER. AND IMPROVED HER VISION.

THIS MEANS THAT THE "NORMAL" RANGES ARE BUNK!!!!
remember this and don't let the docs push you around if you have low-ish OPs!

It was the spinal fluid build up on my inner ear and it had no where else to go but drain out. It has completely stopped not that I had my LP. No ear pain at all. No back pain, stiff shoulders or stiff neck, I even went to the dentist not to long ago cuz I thought I had a cavity and I didn't I checked out just fine. My jaw and teeth even stopped hurting too!.

Like I told my mom and friends this morning its great to see the sun rays again gleaming onto the shrubs out side. It been awhile. And its great to tell people the sound of the tv is to loud and please turn it down. LOL

What was the opening pressure on your LP? I just had an LP myself on Wednesday it was an emergency one. I thought my head was going to explode and I have a shunt that is open all the way.

My opening pressure was 20 and closing was 13. It has been a lot higher in the past but it was only 20 this time.