i am abit confused, so i just wonder if someone has experienced the same, or know why it is like this.
I had an LP 3 months ago with opening pressure 22. since it was`nt very high they did`nt drain any fluid. on my eye exam, my blind spot on the right eye was slightly larger, but i had no papilleoedema. so everything looked good.

so why did I still have severe headaches? I know the pressure was borderline, but I am used to higher pressure. And most of all, why is my vision still blurry, and disappears now and then. when i have no pap?
When I asked, they sad it was irreversible damage on my optic nerve and would allways be there. Can that be true? And if that is the case why is my vision changing from day to day?

Is it possible that it can come from my neck or shoulders? Sometimes when I touch my neck where it hurts the most , I can`t see... everything turns white.

so i am wondering is this symptoms from my iih or just a stiff neck?

Linda, when a lp is done, it merely captures what the ICP (intracranial pressure) is at that exact moment. It may not be representative of what your pressure actually is. Also, 22 cm, although it doesn't sound high, is in that gray zone (20 - 25 cm). It may be that 22 for your body is WAY high!! My opening pressure has always been between 22 and 24 cm. It appears that my "normal" is closer to 10. My last o.p., when I was miserable due to high pressure symptoms, was 13.5 (I have a lp shunt!!).
I hope you can convince your docs to work with you, and if not, find one that will!! If you are having high pressure symptoms, even without pap (I never developed pap but my vision is worse when my ICP is high),
then you need relief!!
Neck pain is a common symptom of IIH.

I have

Sorry, I'm typing on my phone. Accidentally hit send. :Angry:


I have neck pain too. Also, my opening pressure was 28 and my neuro said she couldn't understand why I was in so much pain, because "other" people's pressure was much higher and they were handling the pain better than me! What the heck kind of response is that?

But, yes, your pressure may be high for YOU.

and your pressure may vary considerably from day to day. it increases during sleep due to hypoventilation. I had "ocular migraine" symptoms that were present before I started treating my sleep apnea, then they went away. they always occurred in the morning, which is always when my brain fog is worst. so it may be that when you have eye symptoms it does correlate with higher pressures than what they got on LP. my pressures on LP were only 220 and 230, but I have been incapacitated with my illness, mostly by the brain fog.

from what I have learned about the etiologies of IIH, for you to suddenly lose vision related to a change in neck posture, implies to me that the neck posture is compressing venous outflow from your skull, creating a sudden increase in ICP. I seem to wake up clearer if I wear a cervical collar at night. (available at the drugstore) maybe that would stabilize you into a better neck position? of course stop immediately if it made anything worse. I would definitely find a doc who understands these relationships. most docs are not very good, unfortunately.

Deb

thanks for your answers it is helpful to know it is so individual. my highest pressure was 39 , i hear its common to have a much higher pressure, but on 39 i just wanted to die. :ill
they also took an lp once when i had no symptoms because of a treatment i was going to start on for my bipolar disorder. then my pressure was 9, and i had no low pressure symptoms. so maybe that`s my normal pressure?

wylee: was it worth it for you to get a shunt? do you still have to take medication, when you have a shunt?

My pressures weren't so bad-- 26 and 29. My biggest issue is double vision. How many of you have double vision/diplopia?

I've had episodes of double vision, but tends to depend on my headache pain. I know a lot of specialists focus on the opening pressure numbers, but I've had symptoms when opening pressures were as low as 20 to so high the needle popped out and they couldn't measure it. ICP is in constant flux and the main focus should be your symptoms. If you're still struggling with vision issues after treatment has started, make sure you're notifying or seeing a neuro-ophthalmologist.