Narcolepsy and the Quad

A couple strengthening each other's weaknesses through God's love and life's lessons.

I Slept Through the First Six Months of My Marriage… and Still Counting.

I slept through the first six months of my marriage. I wish I meant slept, you know, like newlyweds are supposed to do. But I mean I literally SLEPT. By a month into our marriage I was sleeping days at a time with only a short pee break every 24 hours. I hated the fact that people were created with bladders. I was tempted several times to just get a Foley catheter just so I wouldn’t have to wake up. Unfortunately, it is frowned upon to steal supplies from my work. Plus, I would have had some very awkward explaining to do if caught, not mention a cataplexy attack that could send me to the ground from the embarrassment. It was all I could do to even get up enough energy to even bathe myself. There were several times I just went days without. And for future reference, sleeping 24 hours at a time plus lack of hygiene can put a little damper on your sex life.

I have always been a tired person. After the first semester of nursing school, my fatigue sent me searching for answers from my doctor. After a few months of being told to just take my vitamins and supplements, or that I was just depressed, they finally sent me to the Mayo Clinic. There, I was diagnosed with postural orthostatic tachycardia syndrome, which was thought to be the cause of my fatigue. I made it through college, passed my boards, and started my career as an RN. In October, I met my wonderful husband, very quickly fell in love, and got engaged at the stroke of midnight of the new year. But my fatigue only worsened through the year. A month after our wedding, my husband begged me to go back to the Mayo Clinic for help with what we thought was just my POTS worsening. I ignored his plea until he finally said, “I miss my wife.”

Mayo was able to schedule me in very quickly. And by very quickly I mean three months away from when I called.. My husband and I prayed for answers. In August, we spent three days at Mayo for autonomic testing. On the last morning, I could hardly wake up. I convinced my husband for “30 more minutes!” I finally rolled out of bed, greasy-headed, no shower. The doctor gave me results any other patient would be happy to hear, “everything is normal”. No more POTS, no cardiac issues, perfectly healthy, but no answers to why I was so exhausted and sleeping so much. I cried. My doctor said, “you should be glad nothing is wrong.” I was not glad, I was angry, because I knew something WAS WRONG. I became angry with the doctors, angry at my husband, with my self, and especially at God. My prayers obviously went unheard, I thought, until the next week I reluctantly went to a nurse practitioner near home to beg for drugs to keep me awake. She’ll never know how appreciative I am that she understood my exhaustion. I was closer to answers when she mentioned narcolepsy. Unknowingly, I still had a LONG way to go.

 

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Categories: Narcolepsy

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10 replies

  1. We never know the struggles people face unless we take time to listen to their story. Thanks for sharing! You and your husband make a very beautiful couple!!

  2. Very well said. People don’t understand how hard it can be when you can’t rest. How terrible it feels to have your body ache under the fatigue with no foreseeable end in sight. Thanks for sharing this and keep them coming.

  3. I’m dealing with sleeping too much or so my family says. On exertion I get tachycardic and sob. It’s been going on for a year. I’m on oxygen 24 hours, and in a wheelchair for any outings. I went to the beach the end of July and never touched the ocean or sand because I could not breath. I am in debt life crazy for tests that have all come back normal now I’m waiting for something else. I’m battling depression and suicidal thoughts. Praying we will find an answer. Waiting for appointment to women’s heart clinic in Cleveland. Thank you for your story, prayers for you and yours. I can’t work, I am 5 classes short of my NP and I’m too sick to finish and I don’t have the money to pay back the loans. I’m so screwed.

    • Praying for you now Jess that you will get answers! It’s hard when you know something is wrong but all the tests and doctors say otherwise. I remember so vivdly crying to my doctor at the mayo clinic when he told me everything was fine. And how I wanted to just sleep and never wake up than deal with my exhaustion and depression. But one thing that got me through was God. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 corinthians 12:9.

  4. I too am a RN with narcolepsy. Few people know my struggle. I go through each day sleepy and trying to act “normal”. Thank you for sharing.
    Heather

  5. I’m 23 and will be starting nursing school in September. I was diagnosed with narcolepsy without cataplexy in 2012 along with POTS. I work nights as a CNA at a nursing home so when I come home I sleep. I could be up for 2 hours and go right back to bed and not wake up till noon the next day. My boyfriend of 7 years always says “no you don’t need to nap” or “you’re always sleeping” so to please him, I try to stay awake. Most of the time he understands I’m tried but there are times it gets frustrating. I tried provigil, it didn’t work. I tried nuvigil, it dropped my platlet count and ended up spending a week in the hospital (my first week of college). I am nervous that when I start nursing school in addition to the hours of studying that comes along with it, my narcolepsy will worsen. Your story inspires me. I hope I can be as strong as you have been.

    • I noticed a big difference when I stopped working nights. Flip flopping from days to nights really exacerbated my narcolepsy. I tried every kind of stimulant and nothing really work. You should look into xyrem. It really did wonders for me. Also there are narcolepsy support groups on facebook and also a xyrem support group where you can look at the pros and cons of it. Let me know what you think!

  6. After being rear ended the whiplash/concussion led to narcoleptic symptoms for me. With weakness and spatial problems. I went to a neurological chiropractor who does eye tracking tests to see how the brain is affected. I’ve had treatments, but the traveling to and back from the doctor, (2 hours away) actually diminishes the progress. Insurance helps only a little, or I would have had continual treatments for a couple of weeks to make a significant breakthrough, while staying in a hotel if I could afford it. The legal aspect of the accident has been very disappointing. My life is dramatically changed and lawyers and insurance try to tell me it’s an age related problem, ( I was 53 when it happened) and that I can’t prove it was caused by the accident.

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