today the pain has been unbearable the diamox doesn't seem to be working and I'm on 2000mg a day now they have started tompax 25mg (this was added last week) I have tried taking the pain killers they gave to me but they are not working and my pain level is up to a 8 out of 10 with the pain killer which is dilliudad. (not sure if I spelled it right) I'm not sure what to do tonight but the pain keeps getting worse.

So sorry to hear that you're struggling right now..I would definitely follow up w/ your prescribing physician asap. If you're not able to reach anyone, go to the ER. They usually call in my neurologist and he's able to respond more immediately. It seems like they'd be able to do a spinal tap or something to relieve the pressure.

I know everyone is different, so it's difficult to make suggestions. I have a 'sweet spot'..I know that sometimes the pain is just unbearable and there isn't much that helps, but if I lay on my side somewhere between a 45 and 60 degree angle it relieves some pressure. Some times moist heat helps too..at least my muscles relax and I'm able to rest a little.

I hope you were able to find some relief..you'll be in my thoughts and prayers.

I have to agree with this too. It cold be that your pressure needs reviewing and dealing with. If things are getting to the point where it is this unbearable then going to the ER is definitely worth considering.

For the time being, I too think that lying at an angle of those proportions should help, and also a cold washcloth over your eyes and forehead and the back of your neck can help too. It's trial and error whether the cold works for you, or like for medmisfit, moist heat.

I do hope that you manage between your painkillers, laying at an angle with either moist heat or a cold cloth help you until you can be attended to. Please let us know how you get on, and I'll be thinking of you.

The pain has calmed down some. I have made two ER trips since then and they haven't helped there at all. The local hospital doesn't even know what IIH is or how to treat it in the ER. My Neurologist came back from vacation and has scheduled me for a lumbar puncture next week and has an appointment for me in June to see a Neuro Ophthalmologist. So things are looking a little better since my neurologist came back.

Melody

I'm glad things have settled down..hopefully you'll get some relief w/ LP. The neuro-ophthalmologist will be able to check your vision/optic nerves too, so it sounds like you're on the right path..good luck w/ everything, and keep us posted!!

Julie

so pleased things are easing for you, and hopefully the LP will give you some relief. My fingers are crossed for you

I wish someone had told me a year ago about that "sweet spot!"

I discovered it by accident, and WOW it's my saving grace. Of course I can't cook dinner or grocery shop or pick up the kids when I'm in my bed on my side with a pillow between my legs in a relaxed fetal position.

But ya gotta do what ya gotta do!

Hope you find relief soon! In the meantime, experiment and see if you have your own sweet spot?

Had my LP last week and the pressure was up to 300 now the neurologist is sending me to a neurosurgeon on Monday 5/23/11 to talk about putting a shunt in. Not sure what questions to ask once I get there though. Any thoughts on what I should ask? I have been very anxious all day since I got the doctors call about seeing the neurosurgeon.

We have prepared guide sheets that we have created to help members be able to talk to their Doctors and Neurosurgeons, we have also included questions that you can ask them. Here are the links;

Thanks Heidi for the printout they were very helpful. I saw the neurosurgeon today and he is going to schedule me to have a shunt put in. The only draw back is that it won't be until July because his office is booked up until then. He said I was a very good candidate for the procedure considering medication and LP's aren't lasting very long for me at all. His secretary did say she was going to try and work me in sooner than July if she could find me a spot.I am looking forward to hopefully being pain free after getting the shunt put in.