MovingMountains – Little Did She Know

…Nearing the Starting Line for ALKS 2680 Vibrance-3

Editor’s Note: Since November, I’ve been working on approval to participate in the ALKS 2680 Vibrance-3 clinical trial for Idiopathic Hypersomnia patients. IH is a rare, neurological sleep disorder similar to narcolepsy that is just now getting the attention it deserves. If you have IH or you have a loved one with IH, feel free to follow along here and on my Facebook page, Little Did She Know. To learn more about the clinical trial, visit ClinicalTrials.gov.

It is just after 1 AM on December 31st. If all goes well, in just under seven and a half hours, I’ll receive my first dose for the ALKS 2680 Vibrance-3 clinical trial for #IdiopathicHypersomnia (IH). I’m not nervous about side effects or scared it won’t work. It’s an odd peace, a calm that can only come from Jesus. I know God has me on this path for a purpose. Whether the drug helps, hurts or ends up ineffective like all the others I’ve tried, I’ve given it all over to God. I’m just going through the motions so He can do His work.

Then why am I up at 1 AM, writing about this, you ask? I’m not sure. Could be excitement. Could be the Twix I had before bed. Could be my secondary #DelayedSleepTendency sleep disorder. That’s right, your girl here has not one but two sleep disorders that feud like the Hatfields and the McCoys.

If you read my last post, “…What the ALKS 2680 Vibrance-3 Clinical Trial for IH Is,” you know it’s been a bit of a journey to get to this point in the study. I’ve made three trips to Cleveland Clinic specifically for this clinical trial so far: the initial physical exam/testing appointment, the eye exam required for the study and now a three-day sleep study appointment. I’ve also had to wear an actigraphy watch for the last 10 days, and I started my 14-day Adderall washout 18 days ago. So, let’s talk about this three-day visit and nearing the finish line on meeting the participation requirements.

L-R: On a flight to Akron after the Cleveland flight was cancelled, and arriving at the Cleveland Clinic main campus after a rocky start. Can you tell I was so tired that morning, I forgot to brush my hair?

I arrived in Cleveland on Monday, December 29. Getting here in itself was a side quest. I had to fly from Charleston, WV, to Charlotte to Cleveland – yes, I had to go south to go north – and upon arriving in Charlotte for my connection, the Cleveland flights were cancelled due to wind from the winter storm in the Great Lakes region. I was rerouted to Akron, Ohio, and then took a 48-minute Lyft ride with a lovely driver named Janelle. Considering I had been off my stimulant for 16 days at that point and had not had any caffeine in two days as a requirement of the sleep studies, I think I navigated that situation pretty well.

When I arrived on Monday, I did some additional questionnaires and last-minute prep work for the sleep studies in the clinical trial wing at the Cleveland Clinic. Then I checked into my hotel and took a nap before returning to the hospital for the scheduled polysomnography (PSG) and the maintenance of wakefulness test (MWT).

I mentioned in “…What the ALKS 2680 Vibrance-3 Clinical Trial for IH Is” that the PSG is the nighttime test given to diagnose sleep apnea, and it’s the first of two sleep studies used to diagnose narcolepsy and IH. If a patient passes the PSG, they stay in the clinic to continue an MSLT for Narcolepsy or IH diagnosis. This was my third PSG, and I passed it with flying colors.

In my last post, I explained that diagnosis also requires the multiple sleep latency test (MSLT), which is a series of nap opportunities spaced two hours apart over 8 to 10 hours during which the patient is in bed in a dark room and is told to try to go to sleep. During an MSLT, the following is measured: if the patient goes to sleep, how fast the patient goes to sleep, if the patient hits REM and how fast the patient hits REM. Each opportunity is 30 minutes, and if the patient falls asleep, they are allowed to sleep up to the 30-minute window.

Similarly, the MWT places the patient in a darkened room, sitting up in bed instead of lying down. Like the MSLT, this test is done every two hours over an 8 to 10 hour period. The test measures if the patient falls asleep and how quickly they fall asleep. As soon as the patient falls asleep, the test facilitator wakes them up. For both tests, the patient must stay awake for the time between each nap opportunity.

L-R: (Left) Tuesday morning, we removed all the wiring except the electrodes that measured brain activity necessary for the MWT. (Middle) After MWT nap #1; I don’t know if you can see how tired I was, but I fell asleep twice playing one of the brain games. I’ve never done that before. (Right) Dressed and ready to go back to the hotel after a grueling 24 hours of sleep tests.

During the MWT, they also had me doing tests – or brain games – on an iPad to check my memory skills and my response time while being without stimulants or naps. They will use the PSG and MWT results to confirm my diagnosis, get approval for my receiving the medication and document a baseline, and they will use the computer games throughout the clinical trial to look for any improvements while on the new drug as compared to the results taken during the MWT.

Later this morning, I’ll return to the clinic to find out if I’m approved to receive the medication in the blind study. We expect a yes, especially since I fell asleep within 5 to 10 minutes of lights out yesterday for three of the four naps (we had some outside stimulant interference that had an impact on the last nap). If we get the go, I’ll have another physical exam by a doctor this morning and complete more blood work and an EKG. I’ll then receive my first dose at 8:30 AM, and they will monitor me for a while after taking that dose because initial side effects with the first dose varied among narcolepsy patients, and I’ll be the first IH patient at Cleveland Clinic to receive the medication.

If approved to begin, I’ll report back to Cleveland Clinic every two weeks for an in-person check-up, additional testing like another eye exam and blood work and to receive the next two weeks’ worth of medication. The trial is a blind study, so no one knows if I will get an actual dosage of the medicine or a placebo. In about 8 weeks, I’ll have to come back and do another sleep study test series to compare results.

When I agreed to this trial, I knew there would be a lot of visits to Cleveland. I didn’t remember what it felt like to not be on Adderall, and while I knew coming off of it in the washout would be hard, I underestimated how hard that would be. I’ve been a complete zombie since I came off the Adderall, napping two and three times a day, and it’s still not enough. The sleep inertia is terrible, my productivity for everything is low, and I am irritable. But I trust God to see me through this.

Because here’s the thing. After God moved mountains for me in hurricane season, I know without a doubt He’s got my back. He’s already at the end of this study. He’s already fought the battle for me. Whatever happens – whether this drug helps or doesn’t – He’s already got it all worked out. I feel like He’s leading me into this study, and something really special is going to come out of it. (Read about God moving mountains in hurricane season here: “…She’d See God Move Mountains.”)

Trust me, kid. I’ve got you.

I don’t like flying, and the flight into Akron was particularly rocky. To distract myself, I stuck an earbud in my ear and turned on my “God” playlist on my phone. I heard a really cool song by Anne Wilson that I had never listened to before, and I want to share it with you. The song is called “Scatter,” and the lyrics say:

“Before I hit the front line, You’ve already gone before. I know that I know the battle is the Lord’s.”

…She’d See God Move Mountains

This past summer, I was on the verge of quitting my job. Like, walking-away-without-a-plan quitting. My internal gas tank was completely empty.

Let me pause here to say that I really do like my job. I love that God uses the American Red Cross as a medium through which I can love and serve like Jesus. (Want to learn more about what I do in Disaster at the American Red Cross? Check out “Humberto, Imelda and Pre-Landfall Disaster Response.”)

But occasionally I go through one of these “episodes.” I don’t know what else to call them, but I know they are born out of burnout, compassion fatigue, extreme emotional exhaustion and exacerbated chronic illness symptoms. Every time I have experienced one of these episodes, I have prayed and asked God to open a door and move me to another job. A less stressful job. A job more compatible with my chronic illness symptoms. And every time, He has said the same thing.

Stay.

I know He hears my prayers when I have no words, so He has definitely heard every sigh when that’s the answer He gives. Every time I plead my case to Him, the end result is the same: I submit and say, “If this is where You want me to be, I’ll stay as long as You want me here.”

The episode I had this past summer was different. It felt bigger than the others, more desperate. Looking back, I think this episode was also compounded by #spiritualwarfare because what happened when I obeyed and stayed instead of jumping ship has had a huge impact on my faith.

It started when we stood up a disaster relief operation in mid-February for flooding in Southern West Virginia. Not only are operations stressful and demanding, but the impact of knowing others – in this case, West Virginians – were affected, is heartbreaking.

February 2025 flooding in Welch, WV. Photo and story can be found on https://www.wvnews.com/.

I had been to the town of Welch, WV, in June 2024 on a mission trip to assist in cleaning up buildings on the main street that had been damaged from a previous round of flooding. The 2025 flood was a personal hurt for me because I had met some of the people who had moved to Welch and put everything they had into those buildings and starting new businesses and faith-based operations to help the rural community.

It was during the Southern West Virginia disaster operation that my dad was hospitalized for pneumonia and my cat, Miles, had a life-threatening health episode. Did I mention stress exacerbates #IdiopathicHypersomnia symptoms?

On Father’s Day, flash flooding in both Wheeling (Ohio County) and Fairmont (Marion County), WV, led us to stand up a second disaster operation. In Wheeling there were fatalities, adding a different level of complexity to the urgency of providing help on the ground.

Aftermath of the flash flooding in Ohio County, WV, on Father’s Day 2025 that took the lives of 7. Photo and story can be found at https://wvmetronews.com.

Then, on July 4, I woke up to news of the Texas flash flooding that took at least 135 lives, including children attending Camp Mystic.

Through my tears, I had that same conversation with God again, and again I got the same answer.

Stay.

What I did next is what I think Papa God was waiting for me to do all along. I said, “Okay, but I need your help. This job is too hard. My IH is too hard. I can’t do it by myself.”

“By myself.” That was part of the problem. I was trying to do this job God wanted me to do without Him. I had asked God for this job, but I had never invited Him into it. I don’t think when He put me in this job He intended for me to carry it all on my own because He knew it would be a lot. And as soon as those words were out of my mouth – “I need your help” – I now know He immediately rolled up His sleeves and got to work.

I didn’t realize until just a couple of weeks ago what God had been working on for me between July and November. There are three big things in particular – mountains He moved – that stick out to me when I think about how He heard me and He responded. First, I realized He had grown the size of my volunteer team. This is no easy feat. There is a shortage of volunteers, and the work we do on my team can be very complex. He has given me smart, willing, compassionate volunteers to help me carry the load every day, which is helpful to me in my chronic illness and a benefit to the region – and nation – when we need to respond to disaster.

Second, He provided me with the only medication that has had any kind of impact on my Idiopathic Hypersomnia. I needed that wakefulness to be able to train my new team members. I have literally been on every medication, including Xywav, in the last three years, and this is the first time I’ve experienced any level of relief.

Third – and this is the big one – He literally rerouted every hurricane in the 2025 season that was heading for the East Coast.

You read that right.My God moved the Mount Everest of mountains for me. He did what I never even entertained as a possibility when asking for help to get through hurricane season. He made what was expected to be an above average season the opposite.

“…Even the wind and waves obey Him!” (Matthew 8:27, Mark 4:41, Luke 8:25)

There has not been one single hurricane that has made landfall on the East Coast this hurricane season. Yes, Tropical Storm Chantal made landfall, but it wasn’t a hurricane. Yes, Hurricane Erin came close enough to cause beach erosion, strong surf, rip currents and coastal flooding, but it didn’t make landfall. Yes, Hurricane Melissa made landfall, but it was in Jamaica, not the U.S., making it an International Red Cross response. Even Imelda, who appeared to be on track to make landfall on the East Coast near North Carolina on the one-year anniversary of Hurricane Helene, made a sharp right out at sea like the others.

Photo of Imelda path from https://www.accuweather.com.

If you google the reason why most of this year’s hurricanes turned right and stayed out at sea instead of making landfall, you’ll see articles and videos explaining that dips – or troughs – in the jet stream have helped push the tropical systems out to sea and away from the East Coast. If you google why Imelda turned away from North Carolina, you’ll see credit given to Hurricane Humberto and the Fujiwhara effect.

But I know the truth. There was a mountain called Hurricane Season standing in my way, and when I asked God for general help, He got specific about clearing a path.

I can hear you now. “Jenn, you really think God diverted the entire hurricane season for you? Seriously?”

Serious as a Cat 5.

I think God answered a lot of people’s prayers by diverting those storms because a lot of people are tired, and a lot of people still need time to recover from last year.

But I also believe He did it for me. I asked for help, and He heard me and He answered.

Trust me, kid. I’ve got you.

If I had left my job based on my emotions instead of obeying and staying, I would have missed out on seeing God do big things. Faith-changing things. Worship-inspiring things. Every day I listen to “What an Awesome God” by Phil Wickham because it expresses what I feel after seeing what He has done. “Fire in His eyes. Healing in His veins. Everywhere His glory on display. Take a look at the stars. He can name ’em all. Before His throne every knee falls. The demons have to run, the angels have to praise.Even the wind and waves obey.”

I have a confession. My faith in God following through for me has always been weak. Not because I don’t think He can but because I think why would He do for me when there are so many others hurting more than I am. If I had left my job instead of listening to Him, I would not have seen what He is willing to do for me. I would not have seen how truly big my God is. How awesome my God is. It is emboldening and exciting and beautiful to see what He can do. And I understand now when people say that if you trust God, He will work things out in ways that are bigger and better than you can ever imagine.

I literally can’t wait to see what He does next.

Did you know I have a Spotify list for the songs I mention in my blog posts?

Look for Little Did She Know on Spotify and follow along!

Song Recommendation for the Week:

“Don’t Stop Praying” by Matthew West

“What’s your impossible? You’re ‘I need a miracle?’ What’s got you barely hanging by a single thread? …Don’t stop believing ‘cause mountains move with just a little faith. And your Father’s heard every single word you’re saying, so don’t stop praying.”