Head pressure/ Head pain - please help!!!
Posted: 29 March 2018 04:01 PM   [ Ignore ]  
Total Posts:  2
Joined  2018-03-29

Hi. My name is Lisette and I’m 43 years old from Indiana. I’m desperate for help and any advice I can get.

3 years ago I developed head pressure and head pain that has never gone away. Everyday I deal with this horrific pain and all the neurologists I’ve seen call it a migraine or daily chronic headache. Most of the time I wake up with an average 5 pain scale and by evening it’s an 8 or higher.
2 years ago I had a spinal tap and it showed nothing. My opening pressure was 20 but according to Drs I don’t have intracranial hypertension.  I’ve seen numerous eye Drs for blurry vision and they don’t seem to see anything wrong with my eyes.
My brain mri has been read as normal and a chiari expert said no chiari but diagnosed me with craniocervical instability.  He suggested I wear a hard collar and do Physical therapy but those suggestions did absolutely nothing for me.
I’ve recently been diagnosed with pots as well.
Leak expert said he’s not convinced I have a spinal leak either.
I’m desperate for help.  I’m mostly homebound now because of this head pain. I can’t seem to find any Drs that believe something is wrong with me.
Any suggestions would be greatly appreciated

Posted: 06 April 2018 12:23 PM   [ Ignore ]   [ # 1 ]  
Total Posts:  1421
Joined  2011-04-19

Hi Lisette, I’m so sorry to hear how you are suffering! The majority of patients we see at POTS Care suffer with high intracranial pressure, and most do well with Diamox. Has your doctor considered that with you? All of this is explained in my book “The Driscoll Theory”. Do you have a copy? Hang in, my friend.


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese