Loosely Connected:Life with Ehlers-Danlos Syndrome

Loosely Connected:Life with Ehlers-Danlos Syndrome Life with EDS | as told by Lauren LaDue
Hypermobile Ehlers-Danlos Syndrome

I generally like to take a break from as many appointments as I can while the kids are on break! This means I’ve got A L...
09/01/2022

I generally like to take a break from as many appointments as I can while the kids are on break! This means I’ve got A LOT of catching up to do next month. 😞

Infusions have been going well minus me getting a little queasy about the poke. We’ve increased my dose a by half and it made a big difference! I’m still at one day per week with the increase and it takes about 3-4 hours per treatment. The goal here is to increase my blood volume and blood pressure to reduce POTS symptoms like fainting upon standing, blood pooling in feet and legs, sleepiness, and fatigue.

I decided to try Botox injections for my jaw for TMJ which feels ahhhh-mazing…but it’s already wearing off and I don’t think the already high dose was enough. Every needle poke into the area beside my temple made a loud sound breaking through the fascia and it sounded exactly like cracking a glow stick! 🤢 But, it didn’t hurt at all!

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