So last night, I was down and out with the usual headache. So I went into the ER. And they decided to give me a spinal tap...

they did it blind at first, no flouro team, or X ray....so they did the LP 4 TIMES :afraid: !!!! ..... ouch...

Then finally they decided to send me down to flouro, who did it right the first time with no pain. my reading was 139, btw.

so now, i am laying flat in bed, but i have a horrid neck ache. And I feel a little dizzy. Is that a LP headache?? Or the starts of one? Or am I being a worry wort? The areas of entry arent leaking or anything, so thats good.

PLEASE TELL ME IM FINE...ugh, no more needles...no.more.... :Angry:

I hope someone reads this quickly...

...............................................and then tells me Im okay. lol

NO MORE HOSPITALS! That was ridiculous. The doctor didnt see any swelling on my optic discs or nerves or whatever, so he thought it was meningitis...what a jerk. He didnt listen to me. I knew what was going on the entire time. He didnt understand that I had the flu, and was still getting over my symptoms. Yes, I have a cough. And we all know that having a flu with IIH is like having crazy aunt Ester visit. woooo....

So I really don't want to go back to the hospital. No more.


Oh and happy new years everyone|!!!

Well, good news, bad news. The good news is that according to your lp reading, you do not have IIH. The bad news is, that you have LOW pressure. A reading of 139 (13.9 cm) is lower than "normal" and could certainly account for your increased issues. Because the docs didn't use a fluoroscope, they probably injured the dura (lining of the spinal column) creating leaks. The leaks are probably internal and minute. Do you find that you feel better if you lay flat? Does drinking a lot of caffeine help? If you haven't tried these two, you may want to. Sometimes the holes heal on their own, sometimes you may need a blood or glue patch. Speak to your doc about it. By the way, there isn't optic nerve swelling when you have low pressure.

hm odd...The neurologist on call said it was my IIH, and that I was right....So pretty sure its my IIH. It was higher my first reading. I knew it was getting up there because of the gross headache, and dizziness.

Its not an LP headache...just a sore neck from laying flat for almost 24 hours. And the flu. I feel great today...just stiff from the LPs.

Thanks for responding

hi Wylee;
I was confused too, but Jenn is in Canada and I don't know if they are using different units but the doc who did the tap told her the reading was really high. it's hard for me to imagine anyone could be alive with an ICP of 139 CM H2O but I think that's what it was. NOT 139 mm H2O. and since she feels better after the tap, it had to be high beforehand.
Deb

Thanks Deb, glad to see I wasn't the only one confused at the numbers!! Maybe the reading was actually 39??

Jenn, the best thing to do is follow your docs orders and do what makes you feel better. As we have said so many times, everyone feels the IIH just a bit differently. Do be sure to keep an ongoing log to keep track of what is going on. Makes it so much easier to stay "on track".

the doctor on call at the hospital was actually surprised I wasnt in a coma, he said it was that high. Funny thing is, a week before I was doing GREAT.

I had very little for a headache, no dizziness, nothing really. I started on my yoga again, and my routine was falling back into place. I felt amazing. Inside, and out. It was amazing!! Even my fiancee said I was just...happier. And I even started looking for jobs.

And then back to all of this. Its like a major slap in the face. To be doing so well, and be getting back on track to this? I feel absolutely ready to give up again. I have never been fond of rollercoasters...metaphorical or physical.. And I dont intend to start now.

Is there really any hope with this disease??

I have to make a correction. I talked to my neuro yesterday...my ICP was 42, it was my BP that was 139, then 140. My apologies for any confusion. I knew it sounded high, but apparently being drugged up will do that to ya. Sorry

[You must be registered and logged in to see this image.] I've never been so glad to hear someone had an op of 42!!

So proud of you for double checking and letting us know the results. Thx.

AND...more great news!...The new neurologists office called today!! I have an appointment on the 8th!!!!! And its perfect because my neuro-ophthalmologist appointment is that day too!!!! WOOOO!

And I have heard GREAT things about this neurologist. My doctor speaks VERY highly of him. keep your fingers crossed ladies and gents...Lets hope this all gets sorted out, and I can finally go on to live my life!

btw...Not sure if I told you all, my other neuro wanted me to get botox shots in my neck...because it wasnt my IIH, it was migraine...BULLSHARK. I've never been one to be "textbook", and my latest LP proves that.

that's fantastic!!!