u/bleachedfawn

and does it help?

Y’all bear with me this is a long one but TLDR: I was misdiagnosed in December by an ophthalmologist, he said i have optic nerve drusen, turns out i have optic nerve swelling that is progressively effecting my eyesight, i have high cortisol and all the cushings symptoms except a few physical symptoms, I get an MRI & MRV on my birthday (August 5th).

Last year in Sept i developed Iritis, this was the same time the rest of my symptoms began to show & progress. I’ve gained over 60 lbs, i have stretch marks that are big and purple, my body feels like it’s always being chased by someone with a knife even if i’m in a perfectly calm environment, i have insomnia, an immense amount of rage (very unlike me), and i can no longer have caffeine or have to be careful even with B vitamins. I am constantly exhausted, suffering from intense migraines and now visual changes.

By December i saw an ophthalmologist who treated my Iritis, while he was looking in my eyes he said “optic nerve drusen” for his nurse to write in my chart; me being curious i asked “what is that?” and he responded with “don’t worry about it, it’s just how your eye is” and i asked “can you spell it so i can at least look it up later?” and he said again “don’t worry about it, it’s just how your eye is”. No further testing for the drusen.

Well by February my iritis was treated, and i asked the doctor “why does my eye still hurt?” and he said “i think you get migraines, which a lot of women get around their periods”. Which, mind you, i’ve told him i’ve NEVER experienced migraines before. What an ass of a doctor seriously.

Fast forward to June and i see a PCP and tell her all my symptoms. She orders me tests including the 24 hr urine cortisol test, which came by high and got me a referral to an Endocrinologist for September. I also requested a new ophthalmologist & asked for a lady doctor this time.

So now here we are, two days ago, i saw my lovely new ophthalmologist. I drew her a picture of my visuals i see, told her my awful symptoms of pulsatile tinnitus, migraine pain, pain on my eyes & behind my eyes, pressure in my head. And she asked twice “he didn’t do anymore testing?”

YALL she ordered an OCT scan and found out i do have optic nerve swelling. Grade 2 disc edema. Bilateral. And the machine took all of 5 minutes and was non-invasive! WHY DIDNT THE OTHER DOC DO THIS TO ENSURE I DIDNT HAVE SWELLING???? Like i know some doctors mistake drusen for swelling but to mistake it the other way around is insane.

Anyway, i’m so grateful to be on the way to some real answers finally. She ordered an MRI & and MRV for August 5th which is my birthday, she said it could be something like IIH, brain tumor, or a brain blood clot. Personally, with all the symptoms i’ve been having that relate to high cortisol i think it’s a pituitary tumor.

Did anyone here have optic nerve swelling that was caused by the tumor? even if it wasn’t pressing against my optic chasm, could it cause pressure in my brain like that?

Honestly, i think i’m rather calm to have been finding all this out, but i think it’s because i already suspected it to be a brain tumor. But as i get all these answers it gets scarier because im like oh okay like i FOR REAL might have a brain tumor. I’ve never had an IV even i never get sick, so im like spinning in my head about all the silly stuff that bothers me. I have a decent support system, family & a significant other, but i dont have many friends i can really talk to about it. Anyway, this is my rant my story idk. My birthday is gonna interesting that’s all i know.

Just want to say how grateful i am of this subreddit teaching me how to collect 24 hr urine after an awful experience with a lab tech that doesn’t want to do their job and explained nothing to me.

Monday i finally got in with my primary care to begin the journey of finding out what is going on with my body. She was a great doctor and listened and explained to me that the 24 hr urine test is the only one they offer at their clinic so we start there for testing cortisol. If it’s high she will likely send me to the endo.

Well her lab tech comes in takes my blood & hands me a big orange jug. That’s it. No instructions. No hat. Nothing.

So i leave and call my sister and she is the one tells me they should’ve given me a hat! She also sends me a video explaining how to use the hat. So the next day i go pick up a hat.

Then i come to this subreddit and read thru others’ experiences of the 24 hr collection, and found out it also has to be REFRIGERATED?! Okay okay well i hadn’t started yet but was thinking too man i pee A LOT (one of the symptoms i did tell my doctor) and as i’m reading a lot of folks got TWO jugs!

So yesterday i call again and im like hey i think i will piss more than one jug! And they tell me “That’s fine”…. what do you mean That’s fine? They said “just bring it in when it’s full” and at this point my flabbers are GASTED. I’m like okay well no that’s not accurate can i just piss in my own jug from home? They’re say hold on and then they put the lab tech on the phone.

She starts with “we’re not giving you two jugs” uhm…. 🫪 then she tells me “just collect every other pee” MA’AM THAT IS NOT ACCURATE. I tell her no i will be getting an accurate test because this is the only cortisol test they provide and i need it to be accurate. I also said I AM SELF PAY so i paid for this. I said i pee a lot and i think i need two jugs and it’s not like i was even given instructions, i tell her i went online to find all this out!

She says “well you didn’t say that when you were here, but if the problem is you want two jugs then fine you can come pickup a second jug”

like honey why the heck was that so hard? Also there is now a $25 charge on my account as if that lil orange ass jug is worth $25

anyway just wanted to share this story because i am shook at the audacity and grateful that this subreddit taught me so much so i had the right information to stand up for myself !

i’m gonna be honest, i would love a spin off show for Patricia and all her lore, everything she says is hilarious and iconic and wholesome, i love her

last episode every time patricia did anything i screamed “hell yeh patricia that’s my GIRL”

what’s your favorite patricia quote? my favorite is still “how old was she?” an appropriate age “what an odd way to describe someone you’re just giving a ride to”

favorite from latest episode: >!”she’s just the worst” after tasing the bitch that don’t like her lmfaoo!<

I’m 30F and got my first migraine last year (May). It was an ocular migraine. Then in September i got iritis. Now i have regular migraines even though i no longer have inflammation in my eye. I’ve never had migraines in my life before this and now i will have a migraine for weeks with all sorts of visual changes & eye pain/pressure.

I see a primary care doctor in June but i am curious what others experiences were in finding out the cause of their sudden migraines? I see most people experience it their whole life, but since they are new for me, what could be the cause?

Other symptoms i’ve had:
Can’t have caffeine anymore
A lot of weight gain with insane stretch marks
Fatigue
Meralgia Peraesthetica in my left thigh (numbness/tingling)
Weakness
Insomnia
Menstrual cycle getting lighter or nonexistent (i take birth control so these should be consistent and have been for years but i just saw the Gyno & he didn’t seem concerned)
Eye/Ear twitching
Pulsating Tinnitus
Heart palpitations (which i’ve mostly conquered)
Loads more symptoms but besides the migraines these feel most important in correlation i think

Any ideas would be awesome because i’m impatient and June is taking forever to arrive (i asked to be put on a waitlist too!)