Empty Sella Syndrome

Hi,
After a follow up appointment I'm left wondering why they bothered. They came across as totally uninterested in taking this further. No information or help. I keep getting all these diagnosis and left to figure it out myself. I wonder if they really know what they are doing, it seems to be a trend to make a diagnosis and leave it there as they think they have done their job. Or could it be beyond their capabilitie to try and help. I'm surprised they didn't play the psychological card when they have no idea. Anyway the alternative is to figure it out myself and manage the situation as best I can. Likely head in the sand ignoring everything and plough on with life while I can, for as long as I can.
Cheers

Does it cause low cortisol. On HC. Doing more tests. Scared since it’s rare. No headaches. Sailboat feeling. Shaking.

Low AM cortisol. On hydrocortisone. For 8 years had internal shaking. No one knew a thing. 4 MRI’s last showed empty sella then I find out my previous three MRIs showed it in my neural Nuero. He said my symptoms do not correlate with the MRI. I don’t know who to believe. I’m on hydrocortisone. I was getting some energy off that but it’s not doing what shit right now I’m back to the internal shaking weakness. I’ve been to four endocrinologist and they’re all the same worthless. I don’t know if I can even trust our narrow in this area. I am postmenopausal so I am on some HRT.

@lornabaxter
While searching for info on symptoms that I've experienced and finally were addressed by an amazing vascular neurosurgeon, I read your now 7 yr old post. My eyes GLUED onto your comment "I had a CSF leak out my right nostril..." I was diagnosed with idiopathic intracranial hypertension in June of this year (2026), and in addition to experiencing so many of the things that people on this conversation thread have undergone (and more), I had a slow "drip" from my left nostril which I attributed to decades-long nasal issues. Clear, no mucous, just clear liquid...suddenly felt a sensation high up in the nostril, then s-l-o-w-l-y made its way down the nostril...thought nothing of it, just was happy that it was not blood since I have had about 8 episodes of sudden, rushing blood episodes from my left nostril (and have had to go to ER 3 times). It stopped within seconds, but just this morning while reading YOUR post, it happened AGAIN.
(BTW: EMPTY SELLA and PARTIALLY EMPTY PONS HAVE BEEN NOTED MANY TIMES WITHIN BRAIN MRIs DONE TO TRACK THE STILL UNEXPLAINED MYRIAD LESIONS THROUGHOUT MY BRAIN, INCLUDING BRAIN STEM, AND THEY ARE NOW "SUPERIMPOSED"...)
I am bringing to the attention of my vascular neurosurgeon what you've posted, and how it has happened to me several times now. The IIH has evidently existed for years, with not one doctor taking me seriously when I'd complain of how I had "brain-aches" that felt like my head was within a vise, being SQUEEZED and ready to implode, and how I'd get headaches while asleep, wake up to excruciating pain at based of brain, down the spine, across my shoulders down to my fingertips, with overall "nerve pain" down to my feet, horrid nausea, throbbing in my temples, overall weakness..I would slowly make my way out of bed, carefully become upright, and painstakingly make my way down to the kitchen to make coffee...drink a cup along with a NSAID (I can't take pain meds, have serious hallucinatory and other reactions). Slowly, the symptoms would dissipate...Well, this amazing vascular neurosurgeon (whom I selected after vetting several others) said those headaches DO get better once upright because position DOES impact on the headache condition...He ordered an MRV, with consult in June, when he laid out clearly what my brain has been dealing with (in ADDITION to the brain demyelination)...sobering to SEE the damaged areas of my cerebral vascular system and how the spinal fluid had no clear avenue for draining back out of my brain, as it's supposed to...Lumbar puncture had to be delayed because I fell twice in July (and the LP appointments were difficult to schedule). LP revealed what the anesthesiologist said was "high opening pressure", and now I have a video visit (we live a distance from the medical center) with the neurosurgeon to discuss what he proposes for my condition. I am indeed emotionally and psychologically impacted by all that is going on in my deteriorating brain. And yes, I'm scared, since I am my husband's caregiver (he's had 2 strokes in time span of 1 year, the recent one in June)...I'm grateful though, that I finally have reasons for all that I've experienced, including the "whoosh" sounds and almost-blackouts...
Another interesting factor that I can relate to: Up until 2022-24, I enjoyed pretty stable weight of no more than 135 on my 5'3" frame. I have GAINED 28 lbs, and have felt so upset and disgusted with the dough-boy rolls of fat on my torso...I could understand that yes, I've been less active since the acute pains experienced from various issues, but the 28 pounds have me feeling upset since all my life I've had body mage issues and worked hard to not gain weight. So I was struck with how this IIH is connected to "obesity" and that LOSING weight would help. So far, I've managed to lose 2 lbs...another 26 to go!
I have more to add, but will stop here...I'm going to search for more info on the "leaking CSF from nose" and be better prepared for questioning my doctor this Friday during the video visit. He is leaning toward prescribing medication but has not ruled out doing the more invasive "stent" (or is it referred to as a "shunt"?). What I've learned about the medications hasme concerned....my CNS is pretty damaged after 12+ years of demyelination, leaving my body so seriously reactive to medications. One of the alternatives is amitriptyline, but that medication created such horribly ealistic night terrors and hallucinations so it's on my "NO" list...
Thanks again for the "gem" that you posted in 2019!
If you can, please let me know how your journey has been since 2019.
I hope that in the interim seven years you have found relief. Mil gracias, and God bless. 🙏🏽

@tammyjbell
Locate a neuro-ophthalmologist who has knowledge of, and experience with, the diorder Idiopathic Intracranial Hypertension. If you you ASK him/her the anser is "no", then move on. I had a neuro-ophthalmogist for about 5 years who had no idea what was causing my acute optic neuritis and 4th nerve palsy, among many other problems. Pretty intelligent guy but arrogant, hubristic, with a God complex, so he did not reach out to colleagues to get expansion on just was was happening to my left eye. So I LEFT him, and did the same with the ophthalmologist from the same medical group, since he was not attentive to my complaints of pain within the eyeballs, the horrid sensation of having something PUSHING my orbits FORWARD, out of the sockets, the exTreme tenderness if touched, the burning sensation that was NOT relieved by eyE drops, the nerve pain electrifying within my temples and up to my brain, encircling the entire head...and so much more. I would be told "...evidently not using enough moisturizing drops..." and told me to just rest my eyes and take a pain killer...but the only pain med that my demyelinating CNS tolerated was Aleve. It did help a bit, along with warm compresses applied to ENTIRE face, with very warm cotton pads on each eyeball...and relaxation imagery, lying down in a silent, darkened room. There's a lot more to my journey, but fast tracking to today, August 11, 2026: I have an amazing neuro-ophthalmologist who is also board certified as a neurologist, and has done studies and published work on the topic of the very problems that I'm facing...and an ophthalmologist who ALSO is educated in the issues with IIH and the precise problems that I'm dealing with. Makes a HUGE difference when the doctors treating you BELIEVE what you tell them, and they know how to help you.
Check with your state organizations to see if you can find a site where you can locate neuro-ophthalmologists. They are like unicorns: very few in any given geographical area.
I hope you have success in finding one. Please let me know about your search.

@cheyne You are quite correct: YOU have to be your SELF-ADVOCATE. To each doctor I'd word very carefully what I'd say about my symptoms while staying calm. (Although internally I'd be anxious, wanting to say "LISTEN UP! I'm scared! I don't know why I'm so UNWELL, and I need YOUR help!)
YOU have to do research on this condition, which I've discovered is considered to be very rare, which is why doctors are so CLUELESS... they have not had an iota of exposure, let alone, experience, with IIH (idIopathic intracranial hypertension). It affects an estimated .2 to 2 people (between ages 25 and 36) out of 100,000 in a general population.
YOU should create a journal. (I do it using Word and save it on my computer but I also do printouts which I place in a binder, so I can read, make post-it notes right onto any page, underline, hi-light. This is a godsend when my eyes are too painful to use my computer.). Make a list of your symptoms, use descriptors (adjectives) that best capture HOW you feel, WHAT you feel, with each symptom. Locate any nearby medical centers that are teaching hospitals, for they are more likely to have neurologists and vascular surgeons who have actually dealt with this rare disease (I have found it referred to as a "disease" as opposed to "disorder"....just semantics, it still is a nasty condition to have). I'm fortunate that my VN is within one of the top teaching/research facilities within my area.
Keep a diary of symptoms: WHEN they occur, WHAT you experienced LEADING UP to an event, WHAT you experienced during the event, HOW LONG it lasted, AND WHAT, if anything, you did to find relief. Make special note of symptoms on your face, temples, eyes, neck, base of head, scalp, and within your brain. ALL of this I have found useful now that I have a vascular neurosurgeon who IS highly knowledgeable with IIH and all that I've experienced and continue to experience. My present neuro-ophthalmologist and my ophthalmogist BOTH are very savvy about this horrid, rare monster that has been my constant companion for about two decades now. I learned that some patients are born with the seeds of the problem, and my VN (vascular neurosurgeon) believes that I was, due to factors that I revealed about my life, and that the extensive brain demyelination that I've had for the past 12 to 15 years has played a role. BOTH venus sinuses are tightly constricted, thus the build up of CSF in my brain...
It's not so much that as you wrote that "could it be beyond their capabilities to try and help." Vast majority of doctors have NO KNOWLEDGE because they were not exposed to it, whether in medical school, while doing their residencies, etc...and definitely can't put 2 and 2 together to come up with a veritable diagnosis because they DON'T KNOW...
And about the psych card: Yeah, my prior ophthalmologist had "that cynical look" on his face, and became cold and indifferent....so I LEFT him (and the hubristic neuro-ophthalmologist)... good riddance...my PRESENT ophthalmologist and the neuro-ophthalmologist are compassionate and kind AND WELL VERSED in IIH, and gear my ocular care to what they know about this monster.
Go on google, search for American Academy of Ophthalmologists and look for help on locating neuroopthalmologists and ophthalmologists within your area. Ask specifically for those dealing with this rare condition. Find major institutes that you can ask the same questions, be PROACTIVE in finding help. Don't be discouraged but do be protective of yourself when and if you are treated like a nut case. (Actually, there is no "if" because you WILL come across dunces who will be skeptical and RUDE.)
This week, I found valid resources on youtube. Check out the presentations by mayo clinic, johns hopkins, and other reputable institutions. The more I learn, the more that I unearth, the less alone I feel, the more empowered I become.
I had a lumbar puncture done last week, a necessary step toward learning the "opening pressure" because my VN said it was crucial toward determining how he plans to treat my situation. I was alert (no general anesthesia) and heard the doctor performing the procedure tell the nurse recording the info, that my OP (opening pressure) was HIGH....Not what I had hoped for, but not surprised at all considering the severity of my symptoms. Lab work was done on the fluid, and the results were concerning: the protein came in at 74 where the high end of normal is 45...and HIGH also were the white and red blood cell counts. I have a video visit with my VN on Friday (today being Wednesday), so I'll learn what those high scores indicate for my situation. I've done a bit of research on them, and stopped because my blood pressure was affected by the troubling info.

cheyne, I am fully aware just what a rough journey you are on, and acknowledge that it it will impact you emotionally, psychologically, physically...try to locate a support group, and if none exists, perhaps start one. That is the situation I am in, ad have been in for years now: no support groups. I'm looking into if possibly an online group exists. I am too overwhelmed right now, what with all the problems from this monstrous disorder coupled with what my neurologist diagnosed in 2024 as advanced multiple sclerosis (at age 76),...and being my husband's caregiver (he's had 2 strokes within the past year)....I just don't have time or energy to spare to start a support group, not at this time....
God bless you on your journey, cheyne. 🙏🏽

Here are a couple of sites to check out, and take notes.😀
Neurosurgery.weillcornell.org Symptoms of Pseudotumor Cerebri
Ninds.nih.gov/health-information/disorders/pseudotumor-cerebri Pseudotumor Cerebri
My.clevelandclinic.org/health/diseases/21968-idiopathic-intracranial-hypertension