Searching for Answers
This started out as a Facebook post, but it was getting too long and nobody likes to read those really long posts where you have to click “See more” (or maybe that’s just me?)
I want to tell y’all a little story about the craziness that has consumed our lives for the past several months. Not because I like divulging tons of personal information on a regular basis. Not because I feel the need for sympathy or encouragement. But because I want to educate and spread awareness. I was very vocal about the struggle we went through my Daddy’s Alzheimer’s for that very same reason. So here it goes.
For approximately the past two years I have these collapsing episodes that started mainly as extreme weakness, inability to form words, dizziness, mental fogginess. Sometimes I would collapse then slowly regain all my faculties. Other times I’d struggle through the dizziness, nausea, weakness and mental fogginess for an entire day. For the longest time we thought it was just low blood sugar that I’ve dealt with since I was a kid and maybe some extra stress. Most of the later episodes lasted 10-40 minutes and involved extreme fogginess, slurred speech, inability to move limbs, and a semi-conscious state. Fun right?
Slowly the “episodes”, as we came to call them, got worse. Joe tells me about a time we were driving back from Amarillo and I just went limp and unresponsive on him then when I came back it was slow and my speech was slurred. Times he’s found me on the shower floor, on the living room floor, the list goes on. In January of this year we started explaining my symptoms to my primary physician. We ran a general lab panel that came back normal was prescribed meds for nausea and for dizziness but that just made me more exhausted. So we saw another doctor in the same building who thought it was anxiety and depression. And yeah, having these episodes was definitely causing some depression moments and anxiety attacks. I felt like I had no control of my body or my life. We spent lots of time in prayer and I started doing yoga and meditation and we tried to move on with life.
On June 30, I collapsed in a patient’s room and was somewhat unresponsive for several hours and once I was awake enough to realize what was going on I couldn’t move my legs for a good hour or two. Then with a rush everything came back and I was fine. Labs were normal, blood sugar normal, vitals rock solid, electrocardiogram (EKG) normal, CT scan normal. So we were told go home, get rest and follow up with my primary care physician (PCP).
This time we went to a Physician Assistant, Certified (PAC) in the same building as my PCP because he had the first available appointment. Let’s draw more labs! And let’s add more to those labs. Thyroid? Normal. Adrenal glands? Normal. Echocardiogram? Normal. Electroencephalogram (EEG) for seizures? Nope, normal. Follow up with neurologist, neuro exam normal. Check Keppra level (it’s a seizure med I’m on for migraines). Care to guess the result. Yeah, normal. Holter monitor to evaluate heart rhythm for 24 hours? Normal.
Well it’s probably just vasovagal syncope, so just drink plenty of water, rest and sit down often, do aerobic exercise and go back to work.
Ok, I can handle that. I’m drinking at least 80 oz of water a day. Eating healthy and recording my food intake to track it with the episodes. Doing yoga and going on walks.
Went back to work for 7 shifts and on the 7th shift it was a bad day. I had been fighting dizziness and fogginess since 11am then around 2pm I crashed while sitting at the nurse’s station. Luckily my coworkers knew this had been happening so they didn’t rush me straight to the ER. I came back around in about 30 minutes and Joe took me home. Three days later I reported back to work for my scheduled shift and was sent home by 8am because since another episode had occurred at work and I was still having them regularly at home(at least 2-6 a week) they declared I was unsafe to work with patients. I understood the reasoning and I would never want to hurt my patients but my heart was breaking. The job I’d worked so hard at and loved I could no longer do.
Back to square one so we went to the same PAC who was literally scratching his brain as we tried to figure things out. So we decided to do a tilt-table test to rule out a syndrome with high heart rate and low blood pressure. Let’s do an MRI with and without contrast to make sure it’s not a tumor, ALS, or MS. And for grins and chuckles let’s send you to a sleep specialist to check for narcolepsy and cataplexy.
The MRI got scheduled first and I’ll be honest. I was praying, “Lord if it’s a tumor or ALS, or MS, I’m okay with that. I know You got this and I’ll be okay but we could just really use an answer right now!” But the MRI was perfectly normal. Tilt-table test, normal even though I fell asleep during it. The sleep study didn’t have any availabilities for my complicated two-part test so we just had to wait. That sleep test coordinator must have gotten tired of me calling everyday so we finally got transferred to another clinic in the next town over.
So finally another sleep specialist intake appointment and the study was scheduled! This post has already gotten too long so I’ll probably write more about that lovely 20-hour out of town sleep study at another time.
After all of that, the results were not 100% conclusive. But both of the sleep specialists I saw agreed that I matched with way too many of the symptoms and definitely had excessive daytime sleepiness. They both feel like in the next 2 years or so it will develop into full narcolepsy with possible cataplexy.
Now, again this post is getting too long and I will post more about narcolepsy, cataplexy, and excessive daytime sleepiness at a later time. Because again this is my purpose, to educate and spread awareness.
Right now, though, I’d like to say something. Some of you might be thinking, ok so you’re a little tired. What adult isn’t tired most of the time?? Guys, I know tired. I know exhausted. I know fatigued. I was in a full time accelerated nursing program, cleaning houses, and taking care of my dad with Alzheimer’s who spent most nights awake, confused, and agitated. I’ve handled severe fatigue and exhaustion before. This is different. I have trouble getting to sleep at night or if I do go down easy I’m awake several times during the night for no reason. Even if I do sleep good through the night, I wake up tired like I never went to sleep. It’s a struggle to get dressed every day. I haven’t been able to work since that last time they sent me home on August 16 so I feel like I should be the good wife and keep the home clean and have meals always ready when Joe gets home. And sometimes I do. But most days I have to pick one or two things per day and I’ll still have an episode. If I overdo it, then I have absolutely nothing left to give my husband when he gets home. Try staying awake for 72 hours straight and you’ll get an idea of how I feel on a daily basis.
Now there’s good news and bad news to narcolepsy. There is no cure and it will progressively get worse. But it can be controlled with medications. Now even though I am a registered nurse, I typically try to use alternative treatments like meditation, essential oils, vitamins, and supplements before taking prescribed medications. But that stuff doesn’t work for everybody and the stuff I’ve tried so far hasn’t worked for me so it was time to try something else. (Please don’t push your opinions or suggestions on this topic.) About a week ago I started taking Adderall, an amphetamine and stimulant to decrease the chronic fatigue I experience daily and hopefully the cataplexy-like episodes. It’s a controlled substance and just ask Joe, I’m not happy about having to take such a medication. Especially if I think about having a family in the future. Right now though I just have to focus on getting better and getting back to regular life and the job I love.
In all my research about what might be wrong since January, and then ever since I first thought it might be narcolepsy in July, I have not been successful in finding a site that answers all my questions or tells what it’s like as a woman, a wife, a nurse, or (Lord willing) a mom. I’m not sure how often I’ll post. But I want to post about the sleep study; what narcolepsy looks and feels like; being a narcoleptic wife and the stress and joys of it on a young marriage; being a narcoleptic nurse; my faith through this chronic autoimmune disorder; and anything else that I come across or face during this time.
Well folks, if you’ve made it this far you’re amazing and I appreciate it. Please feel free to share this and I hope you’ll come back and read my future posts as well.
PS. If you somehow know my grandfather Joe Tarver in Amarillo, please don’t mention this to him. He’s elderly and I know he prays for me daily and I don’t need him concerned or confused about my condition especially since we live out of town. It’s just not necessary.
