Welcome to Connect, @jes078.
I'd like to introduce you to @sandhya60 @kariulrich @cindybrown @rkyobo and @mineolap2, who are also talking about empty sella here.
@joycem also mentions having methylene tetrahydrofolate reductase (MTHFR) mutation. There's an older discussion talking about MTHFR here that you may be interested in reading. http://mayocl.in/2nlSnbE

Good luck with the testing today. I hope you get to the bottom of finding a cause and thereby relief for the intractable headache (IH). Do they suspect clotting or a dural arteriovenous fistula (DAVF)?

Hi @jes078, I was diagnosed with a pituitary adenoma, and I also get headaches a lot. That have not been able to correlate my headaches with the adenoma. I have been diagnosed with cluster headaches, the most painful headaches... I cannot describe. I do have at home oxygen and that has made a difference for me. I believe I have been checked for MTHFR... so many work ups it is hard to remember!! Just curious if you have been checked for Ehlers-Danlos Syndrome?

Thanks @colleenyoung 🙂 The Intractable Headache is caused by Intracranial Hypertension (IH). They suspect the cause of the Intracramial Hypertension MAY be due to a clot (MTHFR) or due to a DAVF. Otherwise, it could just be idiopathic. The MRA/MRV went well today. I also got an emergency appointment with the opthamologist due to a sudden & severe decline in vision. Unfortunately, there's nothing more that can be done right now, aside from the follow up with the neurologist first thing Monday morning. Have a wonderful weekend!

Hi @kariulrich, yikes and yikes. Neither of those sound the least bit fun. I get high pressure headaches from the intracranial hypertension and migraines. The combination are excruciating. I can't even begin to fathom worse. I do recall seeing a show where a guy that gets cluster headaches treats them with psilocybin mushrooms. He takes them once a month and hasn't had one in years. Please don't read that as as a suggestion or even approval. It's just information I happened to recall. I haven't been tested for ED... may I ask what started you on that thought?

The empty sella, and MTHFR made me think about EDS, as both have been talked about in EDS communities. I do not know a lot about MTHFR, but found it interesting. So many illness over lap. You mentioned a host of other related issues... that peaked my curiosity.

@kariulrich, Interesting. I wasn't aware of the correlation. I will definitely take a look! Thanks for the puzzle piece!

So the results are in, and not quite what anyone was expecting. The MRA was "normal", which means blood flow is getting to my brain okay. However, the MRV indicated "The nondominant
left transverse and sigmoid sinus demonstrate multifocal stenosis of
the sigmoid sinus laterally." Which means blood/CSF flow away from the brain are obstructed. And "There is a partially empty sella." Neuro indicated IH could cause the stenosis, or stenosis could cause the IH. Or any number of other things. Either way, a therapeutic lumbar puncture has been ordered to determine whether or not a shunt will be effective. She also added another 20mg lasix and ordered Botox injections. Follow up in 3 weeks. Hard to say what's next.

Thinking of you! @jes078. One moment at a time! How are you feeling about all of this?

Thanks @kariulrich! My feelings are a little on the fence at the moment. One the one hand, I'm elated to finally be getting some answers as to what's causing quite a few of my most concerning symptoms. On the other hand, I'm quite concerned that the medical approach up to this point has failed. At this point, we're grasping at straws. If it doesn't start working quickly, the only other option is to go along with the shunt placement. Invasive brain surgery is not my idea of a good time. 🙁 How are you fairing with your headaches? Other than oxygen, have you found anything that lends relief?

I have not found anything that really helps with my headaches. Usually sleep. I will be thinking of you! Invasive brain surgery not my idea of fun either!