So I have a very similar problem. I have symptoms of low CSF pressure/volume that have been chronic for at least 5 years and are getting much worse recently. I have constant numbness and tingling in my forehead, worsens to pain and stiffness in my neck, pain at the back of my head, tingling and pain in the top of my head, and numbness and tingling in my hands, legs, and feet as soon as I stand up in the morning. The symptoms increase over the day, and I can notice some relief of symptoms by lying down. Exercise makes things much much worse, and will generally trigger a “worst headache ever” migraine within a few hours. Also triggered by weather, altitude, and hormones. As the symptoms worsen, I get a distinct feeling of suction inside my head basically behind my sinuses. When it is really bad, I can sometimes feel the “bubbles” when I lie down and some of the areas equalize in pressure. It is just like when you clear your ears for altitude, but behind the sinuses.
At first I was unsure if my symptoms were more indicative of low or high CSF pressure. I have distinct worsening of symptoms with bending over and with any Valsalva maneuvers, which is supposed to be more for high pressure. I got my PA at my neurologist to let me test Diamox, and I got distinctly worse feelings of suction, so I’m fairly sure I have low CSF pressure, possibly with a leak. I have quite a few instances of trauma and car accidents over the years starting with passing out on a driveway chin first at age 13, and headaches first started in my teens, so there is the possibility of a trauma induced CSF leak. I have also had tinnitus that worsens when the headaches get bad as long as I can remember.
I have done extensive research on CSF leaks and low pressure symptoms, and it is interesting that the longer the symptoms have been chronic the less likely it is to be associated with positional worsening, meaning that the distinct worsening to very severe symptoms when standing is lost. I was able to reduce the daily symptoms by strictly limiting exertion for a few months, but they returned full force the first day I added any exercise back in, and have remained back at the severe daily level since, which to me also indicates a possible leak. I had a MRI with contrast done again in December 2014 with nothing notable for CSF pressure low or high, but according to my research there are a significant percentage of patients that show nothing on MRI especially when the leak is chronic for extended times. There is a study out there that actually shows that the imaging is distinctly different depending on the time since the leak began, and shows how easy it is to miss the “window” when you might see something on imaging. I also had a lumbar puncture to test pressure in January 2015 with no notable results. This is also known to be possible to be in normal range but still have a leak or low pressure/volume.
I have been diagnosed with MCAS, mostly evidenced by a sensitivity to many medications like opiates and NSAIDs as well as insect venom. I started daily antihistamine treatment summer of 2013, winding up on a particularly high dose of hydroxyzine daily and noticing an improvement in the daily facial numbness and headaches. I started taking the mast cell stabilizer cromolyn sodium August 2014, and had an additional improvement in numbness and headache control. I have no real idea of how these medications are impacting my low CSF symptoms other than possibly lessening the nerve reactions?
I recently found out that EDS likely runs in my family. I probably had enough signs as a kid to be diagnosed, but due to limited activity over the past number of years I’ve become quite stiff. My mom and daughter have pretty classic signs of EDS, though. This is important because connective tissue disorders are implicated in increasing possibility of CSF leaks through tears in a weakened dura. Also important because “brain sagging” is more likely from the reduced pressure/volume with EDS, putting more pressure on cranial nerves.
I also now have several endocrine issues, which tracks with CSF pressure issues causing pituitary dysfunction. Of course, when I consult with “real” endocrinologists I get laughed out of the office because my test results just don’t indicate things like full adrenal failure. I am fortunate to have an integrative doc who is willing to treat my hypothyroid with compounded t4 (I react to synthroid, armor, and tyrosint). He also diagnosed my critically low cortisol via saliva tests and I’ve at least improved the deathly fatigue with cortisone replacement treatment. I have had a high result on prolactin, which I’ve seen mentioned in research on CSF leaks/low CSF pressure. I also had a very low in normal range ADH (anti-diuretic hormone) which could be increasing the problems by keeping me more dehydrated because I immediately pee out everything I drink. I even have times where my skin dents from just momentary pressure. I’ve been diagnosed with Hashimoto’s hypothyroid for 15 yrs.
I am getting my neurologist to order a full spine and cervical myelogram, which is supposed to be the best chance of seeing a leak on imaging. If nothing is visible from that, I plan to have my imaging records sent to Dr. Linda Gray-Leithe at Duke who is a neuroradiologist that specializes in detecting CSF leaks. Apparently she is able to see things on imaging that are missed by most everyone else. She performs mainly epidural blood patches for repairs I think. Another option is Dr. Schievink at Cedars Sinai, who is also very experienced with leaks and does surgical repairs.
I am basically driving this bus myself to try to get a definite diagnosis and possibly attempt a repair. It is exhausting and frustrating, and really difficult to constantly go up against disbelieving doctors to get what is necessary. I am putting this info up here hoping that my research and experience might help others.