Oh I see, this isn't that big a deal. I mean, it is, but for a participant, it's not a clinical drug trial or some serious intervention. It looks like adding yourself to a database-kinda deal. Very important, very worth a person's time. Yet comes with all the mustering courage for an EMU admit for certain. In your case, terrifying.
Do you have a pacemaker? Or what's the plan there?
Yeah I think the big deal is to get in even if someone is well controlled so that down the road they have NIH as a resource. I joined to see if they could help me figure out WHY I started having seizures or if there was any way out of being on drugs. Getting the first visit took months, but a follow up took 2 weeks to schedule when I really needed help this year. Very low commitment for first visit, you just meet with an NIH epilepsy specialist who reviews all your records and lets you know if they have any additional recommendations. Even this year I got to choose when to do EMU, when to switch drugs, etc. Very different than a drug trial.
I have an S-ICD (Boston Scientific). Defibrillator, monitors for arrhythmias, but doesn’t pace.
I am so glad you were able to hike before the NIH stint. Your writing is so beautiful, Lauren! Thank you for sharing such personal posts. Sending lots of love and positivity to you.
Thanks Dan! The study I joined is a general big data cohort of people with epilepsy. The first visit five years ago, they just confirmed I should keep doing what my doctors said bc I was controlled. But being in the study meant that when seizures worsened I could quickly get in for a follow up. It’s kind of an entry point to other studies, trials, and treatment options. Link: https://classic.clinicaltrials.gov/ct2/show/NCT03478852?term=investigating+epilepsy&rank=1
Oh I see, this isn't that big a deal. I mean, it is, but for a participant, it's not a clinical drug trial or some serious intervention. It looks like adding yourself to a database-kinda deal. Very important, very worth a person's time. Yet comes with all the mustering courage for an EMU admit for certain. In your case, terrifying.
Do you have a pacemaker? Or what's the plan there?
Yeah I think the big deal is to get in even if someone is well controlled so that down the road they have NIH as a resource. I joined to see if they could help me figure out WHY I started having seizures or if there was any way out of being on drugs. Getting the first visit took months, but a follow up took 2 weeks to schedule when I really needed help this year. Very low commitment for first visit, you just meet with an NIH epilepsy specialist who reviews all your records and lets you know if they have any additional recommendations. Even this year I got to choose when to do EMU, when to switch drugs, etc. Very different than a drug trial.
I have an S-ICD (Boston Scientific). Defibrillator, monitors for arrhythmias, but doesn’t pace.
I am so glad you were able to hike before the NIH stint. Your writing is so beautiful, Lauren! Thank you for sharing such personal posts. Sending lots of love and positivity to you.
You're a very good writer. Excellent job putting together this substack. I feel like this is much more useful and effective.
Do you have a link or anything for the NIH study you're participating in?
Thanks Dan! The study I joined is a general big data cohort of people with epilepsy. The first visit five years ago, they just confirmed I should keep doing what my doctors said bc I was controlled. But being in the study meant that when seizures worsened I could quickly get in for a follow up. It’s kind of an entry point to other studies, trials, and treatment options. Link: https://classic.clinicaltrials.gov/ct2/show/NCT03478852?term=investigating+epilepsy&rank=1