Kristena,

You sound miserable. I relate. I'm going through a rough patch myself right now. All I have to offer is the list of old tricks. Don't lay flat - recline. Hold still and relax. Stay in a cool, dark quiet room with ice on your head and neck and a nice warm blanket if you need it. Think beautiful thoughts. Stay away from caffeine and alcohol. Eat on time. Drink water - dehydration headaches are just as bad as IH headaches, though being just a little dehydrated seems to help me. A cool washcloth feels good over painful eyes.

If the pain is the worst you've ever had or a new kind of headache call your neuro or go in to the ER.

ACTUALLY..... have your visual fields been checked lately? I have blurry vision with cloudy spots sometimes but no paps. So vision junk can happen without a swollen optic nerve.

I wish there was a way to calm all this down. Actually, now I know a way. A sympathetic doctor at urgent care gave me prednisone when I came in with a month-long headache that had been an 8-10, with no end in sight. The relief I got from Prednisone was bliss. I didn't hurt anyplace for three weeks. Then I had to go off. Prednisone is bad stuff. My doctor won't put me back on.

Theraputic LPs aren't recommended for people with IH. It can cause problems, like brain herniation. But an LP might give some relief.

My pain pills don't take the pain away, but they make me sleep through the pain. Okay for a day or two, but no more.

Unsteady and weak. When I feel that way I tend not to pick up stuff I drop, kick off my shoes in the foyer, not straighten out the corner of the area rug. One big trip and fall hazard. Please see large bruise on my left thigh. I'm trying to do better as a result. Please be safe and don't let that be you, okay? Trust me when I say a fall makes a headache much worse.

I have gotten that way in the past but not since my jaw surgery. in retrospect I wish I would have gone in to ER and had my pressure measured when I was that sick. now, it would generally respond to Ibuprofen and/or Vicodin and sleeping it off. if you have been getting steadily worse for 4 days with no response to pain meds, I would definitely go to ER. your neuro sounds clueless. "just" high pressure? hello? does he think the risk of blindness is unimportant? beyond your discomfort, the visual symptoms necessitate doing something to lower your pressure soon.

My neuro Is clueless....let me explain. Mon thru Wed I called and left a voicemail asking questions and requesting a call back, Wednesday I called again pressed 0 for the receptionist and talked to him and found out vision stuff was "just high pressure" Thursday morning I woke up in more pain and able to see less so my husband took me to the ER. Once there had to argue past the I'm not trying to get drugs part (of course) and that I had already talked with the dr and things had gotten worse. Six hours later I'm getting pumped full of drugs and told to come back the next morning for an lp.
Lp goes better than the one before, opening pressure was 24 though. Drs office calls and says please come in at noon to meet with dr. So I wait my 2 hours and go over there and wait another hour to see him. Only to get the royal brush off and told that PTC level is actually 25.
Today, I can see better but my right eye is still killing me when I try to move it too much and as long as I'm laying still or standing I'm somewhat ok on my head but sitting is out of the question because of waves of pain and nausea. Help?

sooo.....did anyone look in your eyes? have you seen the ophthalmologist lately? you need to. actually, borderline PTC is 20-25, and you are in that range. the pressure affects different people differently. the question is how do you feel after having your pressure reduced after the LP? tell me they drained you to below 20? what was your closing pressure? if you feel better with a significant reduction in ICP, that's PTC, so sorry Mr. clueless neuro.
take a look at this thread:
http://www.ihaveiih.com/t1160-hello-it-looks-as-though-i-have-iih-waiting-for-lp
she has papilledema and her opening pressure was 25. sorry that's not a whole lot different from 24. if you are having visual symptoms, go to the ophthalmologist. and you definitely need a new neuro. ugh!

Listen to sopiasmoms advice I had grade3 paps with opening pressure of 11, now figure thar one out! I cant other than botched lp.

Well the good news is my vision has cleared up since the tap, mostly. The bad news is I can't sit up or walk without excruciating pain knocking me to my knees, and this is after a blood patch on Sunday... So I can see but I can't walk or sit or anything else or I can't see but I can walk....sorry poor me moment. The last eye dr visit was when they told me I have to get pressure under control consistently or risk losing vision permanently (and that was less than a month ago? And was main catalyst for finding new neuro) dr clueless (new neuro) said if eyes were still blurry this week after tap then needed to go back and get eyes rechecked for pressures. They didn't do a closing pressure, just an opening and truthfully I don't even know how much they drained off.

Thanks to all,
Kristena