u/Firewhiskeyandsin

Female, 31, 145lbs
Taking Wellbutrin, caplyta & focalin
Diagnosed EDS, POTS, endo, pcos, mcas

https://drive.google.com/file/d/1qnyTcvZIuP-XYABgXhIGXf9GMRRWBs-p/view?usp=drivesdk

I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

F/31/145lbs
I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

I had surgery for bowel involved endometriosis 3 months ago, and for 2 years now have had drs and nurses say I don’t have a rectocele and I’m too young (my colorectal Dr just 4 months ago diagnosed a small rectocele) yet I absolutely can not go to the bathroom without extreme splinting. Anyway come 3 days ago, I’ve been nearly unable to pee at all. Sat with a washcloth on my belly for hours to get dribbles out. Then decided to feel if something was going on and my urethra is like way displaced and pushed far up with a bulge under it and I can clearly see/feel my cervix, and my vaginal opening is crazy looking. Nothing is actively falling out of me but I feel like I have 50lbs of water in my lower abdomen and like if I relax my pelvic floor (which I don’t see to be able to all of a sudden) that things wouldn’t stay in place. I’m having an insanely hard time going to the bathroom in both areas. The abdominal ache is awful and I’m finding myself just irritable angry without realizing it’s probably because I’ve been in constant pain. I went to the er 2 days ago due to not voiding for nearly 2 days, they gave me a cath, zero exam, and said I look fine on ct and ultrasound 😐 I’m obviously going to make an appt with a specialist or maybe go to my endo surgeon but wtf can I do in the meantime and how do I know if it’s something I need immediately taken care of or just deal with it until I see a Dr? The pain is insane, I’m so exhausted, I’m finding myself patience as a mom is beyond thin and that’s really really bothering me.
Side note, I do have EDS, and have had 3 abdominal surgeries thus far if that changes anything.

I swear to god if it’s not like 3 nuts and 2 raspberries I can not eat a damn thing during the day. Nothing looks good or sounds good, to the point of just complete aversion. Then I take meds at like 9, and by 11/12 I get ravenous in a pregnancy cravings type way. Almost like munchies. Is anyone else having this experience?
I realized my body might be deprived of god knows what when I grabbed a pickle, bagel with jam, veggies/hummus and ice cream..🫠