I just read an article about low CSF pressure. It fits quite a bit of my symptoms. I'm wondering if this could be a possibility and if so, would the chiari be causing this. The nuerosurgeon didn't seem to think there would be any issues with CSF flow, but I have to wonder since there is crowding due to the Chiari.
Rese, usually low CSF is due to a CSF leak or just a persons low production. The production CSF happens in the brain. Low CSF can actually cause a Chiari malformation, but I don’t think it works the other way around…? I think the way to diagnose low pressure is with a lumbar puncture- the can get a reading on the pressures that way. I’m interested to see what others say. Have you ever tried hydrating yourself with electrolytes? Adequate salt intake can sometimes help us with the headache and duzziness. Dysautonomia can also cause some of these same issues.
Jenn 
Hi Rese:
I have had some experience with CSF leak repairs assisted by CT myelogram. My repairs were done by a neuroradiologist--twice with blood patches and once with fibrin glue. Unfortunately, they did not seem to help me with headaches and other neurological issues.
I have read the Hopkins webpage article before and after you posted a link to it I re-read it. It is consistent with the symptoms I experience as well. My headaches start shortly after I get up out of bed in the AM. For the longest time, I was convinced that I had a cervical or intracranial CSF leak after trauma that I suffered in 2010. In searching for an answer, I contacted one of the neurosurgeons in the US who specializes in epidural CSF leak repairs. He did an intrathecal saline infusion on me in August 2013. A lumbar puncture was done and a catheter inserted to infuse saline into my spinal canal. The goal of this procedure was to increase the CSF volume/pressure to see if this would alleviate my headache symptoms.
The procedure did not help me. In fact, if anything, it made me feel worse--my symptoms were magnified. The headache pain was so bad that I began to get nauseous and I rarely have that problem. I was discharged from the hospital feeling terrible and it took me a good two days to recover.
This experience made me think that perhaps my headaches were being caused by a CSF obstruction and not a leak. My understanding is that one of the problems with trying to diagnose whether headaches are caused by CSF hypertension vs. hypotension is that the symptoms are often similar. So unless a lumbar puncture pressure reading shows that the pressure is abnormally low or high, it is difficult to determine if the headaches may be due to a CSF leak or obstruction.
If you have any other questions, I would be happy to try and answer them.
Regards,
MC
Thanks MC, that is very helpful advice.
Hi, They diagnosed my diminished CSF flow with an MRI CINE (?) study. My neuro said that with Chiari you should not have any spinal taps or lumbar injections which explains why when they tried to of the spinal epidurals after my accident I had horrific spinal headaches. The neuro was surprised how diminished the flow is since the tonsil swelling has not increased.
Wish everyone well!