How I Got Diagnosed With Narcolepsy

Diagnosises of Narcolepsy takes not giving up even when you want to. Below is a journal entry I had written nine months after my diagnosis to remind myself of my personal journey and what I went through to get there.

November 4, 2011

Sitting here this Friday morning it is dreary, drizzly, gray and the leaves are falling from the trees and it is such a good morning to curl up with my pink cozy blanket and go into my dream world and let everything else go.

That sounds like such an inviting idea to most everyone, and you would think that would be what would be best for me since I am so tired, but ironically it isn’t. So, instead I am going to begin my story.

I believe God gives all of us a story to tell and learn from so that we can help others. I never imagined this would be MY story, but it is and hopefully it will be successful in helping others.

February 2011

My life took a change I never expected – I was diagnosed with Narcolepsy with Cataplexy. I had been looking for years trying to discover what was dragging me down and making me so tired.

No one believed how tired I was and that it wasn’t normal tired. They just thought I was depressed, overwhelmed, tired from having three children and some probably just thought I was lazy.

My house was never clean, dishes never done, laundry always piled up and some days I didn’t even care if I got out of my pj’s or fix my hair. It was just too exhausting to do so.

I began to think maybe I was just depressed too and even was seeing a therapist who put me on medication for depression and anxiety, it helped, but it never took it completely away. I walked around in a haze most days with a fogginess that made me feel like I was losing my mind some days and made me so forgetful.

Of course, I just assumed it was another anxiety symptom. I continued with therapy, medication and trying to exercise, but never had the energy to establish a routine for working out. It was horrible. I hid from the world and did not let anyone know how much I was sleeping.

I thought if I slept during the day and got rest, then I would be okay when the kids and my husband got home and everything would be fine. Wrong! The house was never in order, we didn’t have a schedule and all I ever wanted to do was sleep and sleep some more. I was never rested and would get so aggravated.

Diagnosis – Finally!

My blood work shifted, I needed iron, so I began taking iron pills. Great this is going to do it! Wrong – again! It changed some, but not significantly.

Continued blood work began to show other abnormalities such as low platelet counts and low white blood cells. Although it scared me I thought we were on the right track. I was sent to a hematologist who tested me for many, many blood disorders, cancer, MS and Lupus.

They came to the conclusion that it was mild Lupus with Fibromyalgia. I was to exercise, eat healthy, take my vitamins, avoid heavy sunlight exposure and rest. They did not have to tell me to rest, I loved to rest, only I was gaining weight and I had never gained weight so quickly.

I craved sugars and caffeine, but was relieved that they gave me a boost and I did walk most days and I began to feel some better, but therefore, again, not significantly that it really made a difference in my lifestyle, but at least we had a name. It went on like this for several years.

Depressing, yes, because they were only placing assumptions on my diagnosis and since there really isn’t a confirmative test for Lupus, then, I just had to go with what they said.

I began to question my diagnosis and how tired I was again, so I changed doctors. I still was trying to get someone to believe me and help me with my symptoms of tiredness, but they just said it was normal with my condition and to keep doing what I was doing or sometimes they would send me to other specialists to appease me and have something else such as my thyroid checked.

Nothing ever changed, so I changed doctors and thought maybe new perspective would be good. The doctor I changed to was wonderful and I had heard many great things about him, but it didn’t matter.

I walked in the office that day and pretty much told him I was done with doctors, that he could continue to watch my blood work, but not to tell me I am not tired and not to send me to any other doctors unless he was sure of what might be wrong with me.

I told him we could continue with the diagnosis of Lupus and Fibro, until further symptoms began, but that additional testing was not going to happen without significant reason. I was tired of being the guinea pig and no one believed me anyway, so why continue.

During my time with this doctor he discovered my Vitamin D was low and we addressed that issue, but that was all. He continued to monitor my blood work for a year and then my husband, Rob, decided we needed to try again to get to the bottom of this. Since that time I have learned he was scared that I had a rare cancer that wasn’t going to be found until it was too late for treatment.

I remember sitting on the stair steps of our home and him wanting me to speak to the doctor about more testing and I just cried and told him that if God wanted us to know what was wrong we would know and I thought he just didn’t want us to know, so why fight it.

Of course, my husband won by taking me to the doctor for my next follow up and another symptom was found.

My red cells were out of whack and the doctor thought maybe I had some sleep apnea because I didn’t sleep well and my husband totally went with this because he complained of me tossing and turning all night long. All I could think was – sleep study, really?

No, not happening.

It took quite a bit of convincing, but I was just appeasing Rob and my doctor by going. I didn’t have the normal sleep symptoms of sleep apnea. I didn’t even snore or wake up gasping for breath, so okay, I will go but it is going to be a waste of time.

Dr. Silas knew from the day I walked in his office that I had Narcolepsy, how, I do not know. I laughed at him. I didn’t have Narcolepsy. I didn’t just fall over asleep. At this point, he had my attention, but I was thinking this is just going to be another dead end, but Rob really wanted me to try and deep down maybe God was pushing me too.

Remember, I didn’t think God wanted me to know. The night of the test, because he was going to rule out sleep apnea, I prayed that God would help us find it if this was it, because I was just done. I guess he knew when I just couldn’t take anymore.

I awoke the next morning to discover, as suspected, that I did not have sleep apnea and that I would continue with the daytime test for Narcolepsy.

Two days later a confirmed diagnosis was established. I was Narcoleptic!