What's Wrong With Wren
Where do I even begin?
For those who don't know me or aren't super familiar with me, I have a weird seizure disorder. NOT Grand Mal, the type that have you shaking and flailing and falling over. More commonly, I have Petite Mals, where the lights are on and no one is home. I have had these since I was at least 11 years old (possibly before? Unknown) and they were not even remotely diagnosed until I was 25 years old. They got worse in that time and caused other problems. I have migraines connected to those seizures. (I also have barometric migraines, but that's a different problem)
I also have vascular Ehler-Danlos Syndrome, or vEDS. Hypermobile EDS, or hEDS, is the most commonly known type. EDS, broadly speaking, is a connective tissue disorder. There's a bit of overlap between the vascular and the hypermobile types, depending on which of the ones you have, but typically hEDS effects the tendons, ligaments, and muscles. This is why hEDS patients are so bendy and many become contortionists.
vEDS, however, gets most effected in the vascular system. That is to say, veins, arteries, the heart, and the brain. This particular type of EDS is potentially deadly, commonly causing heart attacks, strokes, and aneurysms. I had two great aunts who likely died from heart attacks very young from the exact same condition.
My seizures and vEDS are likely the ultimate source of the brain aneurysm I probably had two years ago. That one is a difficult equation to solve because of how many factors are involved, but I'm sure they didn't help. When it happened, I was incapable of thinking at all (understandable) and the person with me did not take me to the hospital. I lived, but by the time I was capable of asking for medical care, it was too late. The evidence was gone and I lived in agony for more than a year after.
After the brain aneurysm, I had many seizures. I don't think I could ever name a number. They would happen in my sleep. I'd finally drop off after 2 to 5 days of slow improvement and wake up feeling worse than I had before. It was a scary time, and especially when that gap between seizures got smaller and smaller. I didn't know what was wrong, what was happening.
When you can feel yourself dying but all your tests are coming up normal, it's terrifying! And the medical community where I was at the time was not a good one. I had a doctor ask me once what I wanted him to do. I still don't know how I held myself back from shouting "Your JOB!" at him. I wonder sometimes if I should have. But instead I took a breath and asked why I hadn't been given gabapentin for the obvious nerve pain that accompanied everything else. He blinked at me, told me I had a good point, and gave me gabapentin.
And I slowly started to get better.
I managed to get my neurology taken over by Loma Linda University. Seizure meds have been adjusted to a level where things are slowly starting to calm down. So is the nerve pain, so that's nice. But it's hard to pin down what is going on when it seems to be several different things.
On Wednesday, December 17th, 2025 I had another strange event and was admitted to the hospital uncertain if I was having a stroke. Ultimately a stroke was ruled out, but I certainly had several seizures and possibly a transient ischemic attack, or "mini stroke".
Other health problems lurking around are things like; gallbladder disease, currently playing merry havoc; allergies, constantly poppin' because pine is a bitch to me like that; hypothyroidism, just bothersome enough to need medication; arthritis, it's been a rough life; an enlarged left chamber in my heart, cardiologist appointment in January; asthma and assorted other lung problems, pulminologist in February; and I broke my wrist in May of 2024 and the nerves in that wrist are still voicing their displeasure as they slowly, slowly repair. I've seen my x-rays, they have a point.
And this is only the stuff I know about. I may have left things out by accident. This doesn't include any injuries related to EDS that are ongoing, either, nor does it include ADHD, Autism, and (C-?)PTSD although I am in treatment for those as well.
If I ever mention that I am tired, this is why. This is almost entirely why.
Edit: (note to self, don't forget to use spellcheck, Wren...)
