Empty Sella Syndrome

Newly Diagnosed with Empty Sella Syndrome. Just wondering if anyone else is experiencing headaches when coughing: I have a consistent headache occasionally, however a lot of times if I cough..or bend over to pick something up, I experience a headache that feels like pressure.

I started pursuing persistent eye socket pain on the left side in I think it was early 2017, I’ve had so many MRIs. I have pulsatile tinnitus constantly, which has gotten worse starting in the beginning of the 2000s. MRIs don’t reveal anything of concern there except of course, partially empty sella. I also have brain lesions and one spinal cord lesions that they just keep watching to see if they change. One more new symptom and I guess they would start treating me for MS. I’ve had two neck surgeries to deal with the neck issues lower down (pain, radiculopathy) They don’t want to deal with anything higher up in my neck unless absolutely necessary. I have asked repeatedly about the PES, and been told the same thing everyone else has, that it’s no big deal. I’ve had my pituitary hormones & slight goiter checked, everything is always in the ridiculously normal range, but I am very overweight in the middle, and I just look somewhat hypothyroid. (thyroid issues run in my family and my 30 yr old daughter has Hashimotos).

I am on gabapentin, ajovy,relpax, Celebrex and pain medication (which I try to take rarely, I want to avoid being in the medication overuse syndrome, which I have experienced before). have to be constantly careful about what I eat because of the headaches that are induced. I can’t handle much salt at all, nor can I eat a large meal, such as Holiday dinners or I pay for a day or two with a screaming tension headache which then triggers migraines. The tinnitus is absolutely unstoppable but since I’ve been living with it for so long, nobody seems to care. I feel like I have about 18 dentist drills all screaming inside my head at slightly different pitches, plus there is the sound of a large semi truck idling outside my house all the time it seems, that low rumble inside my head. oh yes, and the blurry vision that comes and goes and the difficulty trying to get progressives that I can stand to wear for more than an hour. I have at times gone for months with that problem and it’s in both eyes (even with one eye ) that I get the diplopia. my optic nerves appear inflamed on MRI but they don’t show inflammation to my optometrist with a dilated exam. I have seen a neuroopthalmologist as well. Nothing. Just a lot of the symptoms of PES without the clinical findings. I have fallen out of trees and horses. When I was younger, we never looked into anything with my frequent headaches, which started fairly young and became chronic in 2017. We just coped and figured it was on the “normal” spectrum. Nobody knew anything back then.

So, What justifies surgery to see if this empty sella is at the root of a lot of my symptoms? I have read literature that suggests the constant headaches are an indicator for surgery and others that say it’s not. I’m so confused and sick of taking medication all the time and having to walk that fine line of taking enough medication to manage the pain and taking too much to where I induce a different kind of pain. I haven’t even thought about going back to work now that my kids are adults because I would be useless. Thankfully, my husband’s work & insurance allows me to do that but I dread what will happen if God forbid anything happens to him. I’m only 53 but I feel as useful as somebody in a nursing home often feels.

Yes. Empty cella syndrome can cause damage to the optic nerve from extra CSF. If you begin to have blurred vision or even not you should go to an ophthalmologist who can check for nerve damage. There are meds that can help with the headaches also caused by the increased pressure in the csf.

Hi,
My imaging reports indicate that I have white matter lesions, partially empty sella, and CSF leak; however, my neurologist doesn’t seem too familiar with either and has not given me a formal diagnosis. My first visit with my neurologist was for epilepsy and atypical seizures. Instead of researching my medical history and asking questions, he insisted that my epilepsy and seizure symptoms were due to mental health. They are not. I started monitoring my blood glucose despite not being diabetic or non-diabetic. I cycle between hyperglycemia and hypoglycemia all day. There may be a relationship between most symptoms that I’m hoping to find and contribute to by joining this discussion to.

I would recommend an endocrinologist. Mine is monitoring my empty sella.
Also, I have never heard of seizures being caused by mental health. Perhaps a second opinion would be good.
Good luck.