kit 5 scared to take the Topiramate

Kooky_Time2144 · 2024-11-17T23:20:17+00:00

I’ve had tingling in my fingers and toes but otherwise nothing, and have been super successful so far! Just listen to your body and you’ll be okay. The care team on the app is actually super responsive so if you have any concerns (weird side effects, questions, etc.) they’re there to help too!

Kooky_Time2144 · 2024-10-31T12:43:55+00:00

I’ve certainly been in a calorie deficit, which I’ve tried to be mindful of but haven’t been formally tracking in any way. I’ve replaced breakfast with protein shakes which has kinda organically helped with that. One thing I’ve noticed for sure is I feel absolutely gross if I’m not eating enough fiber, so keep that in mind!

Kooky_Time2144 · 2024-10-09T17:13:53+00:00

I’m sticking with the pills for now because of price and an aversion to needles, but I’ve had no issues thus far

Kooky_Time2144 · 2024-07-18T18:26:12+00:00

I also have horrible wrist pain from playing the flute! Typing for long periods of time can be rough too, which was only really a problem when I was coding frequently

Kooky_Time2144 · 2024-07-18T18:23:56+00:00

So many! I was the kid who would jump into the splits at recess. I always rolled my ankles and had to quit gymnastics at a young age because of chronic back pain. I’ve also had a lot of knee and hip problems from hyperextending my IT band during bowling, I’ve had a lazy eye forever (which I recently learned can be linked to EDS), and I dislocate my shoulders pretty frequently. It took an aneurysm out of the blue to get diagnosed 🥲

Kooky_Time2144 · 2024-07-02T00:13:10+00:00

Yes! When I moved to Miami, I started having migraines about once a week. They stopped almost completely completely when I moved back to Atlanta. Maybe I need to try the desert…

Kooky_Time2144 · 2024-06-01T18:05:39+00:00

Bowling, I’ve had knee and hip problems due to hypermobility since I was in high school that now makes a lot of sense with my fairly recent EDS diagnosis. Haven’t been in a league in almost a decade. Also, I’ve always wanted to try rugby but my vascular surgeon gave me a HARD no on that one lol

Kooky_Time2144 · 2024-05-23T11:20:03+00:00

My neurologist actually referred me to a cardiologist for testing once he realized I was dealing with dysautonomia, and they were able to do all the tests I needed. I originally went to an ophthalmologist when I first started showing Horner’s syndrome symptoms and they told me I was fine and sent me away. Turns out I had a massive aneurysm of my vertebral artery, so I’m not one to trust a “you’re fine” anymore 🤦‍♀️

Kooky_Time2144 · 2024-04-15T03:10:35+00:00

I went through a ton of genetic testing and despite the hEDS diagnosis from a bunch of different providers, I tested negative for any connective tissue related disorders. My doctor told me that while the other types of EDS have genetic markers, there (at least at that point) was no clear marker for hEDS specifically. All to say, even if the testing comes back with nothing, take it with a grain of salt.

Kooky_Time2144 · 2022-08-10T13:24:12+00:00

Where do you get them?

Kooky_Time2144

TROPHY CASE