NO more N

My health has been a constant rain cloud looming over my head since 2012. Mild issues started in 2007, but it wasn’t until 2012 that I felt sick. The main thing was I was so tired and overwhelming sleepiness would hit me. I had a sleep study done, and in August 2012, I was diagnosed with narcolepsy.

The following year and a half of my life was a nightmare. I took medicines that seemed to help at first, to only feel worse in other ways after a while. I searched and obsessed over any and every little thing that could help me; I micromanaged each aspect of my life in order to try and keep my condition under control. A month after diagnoses, I lost my job. I decided not to get another job partly because I feared I couldn’t do it and would be embarrassed again and also because stress was one of the things that seemed to make my narcolepsy worse. Everybody knows jobs are stressful. I literally feel like a year and a half was stolen from my life. Narcolepsy took my career from me. Narcolepsy took away my confidence. Narcolepsy tainted my honeymoon and sucked the life out of my marriage. I was diagnosed only a month before our wedding. The first year of our marriage was far from what it should have been. Narcolepsy even stole time from me. I slept so much during the day that I had less than half the amount of waking hours as the average person does. Half as much time for family. Half as much time for getting things done. That drove me absolutely crazy. Then, there was my awful memory lapses and mistakes because of my mind being in a fog. Oh, and lets not forget the TERRIFYING hallucinations I had almost every night.

Around the beginning of 2013 I was finally starting to feel like I could cope with what my life had become, and that I had found sufficient ways to deal with it. I had also found a combination of medicines that actually helped some. Then, SURPRISE, I found out I was pregnant! I was totally excited, but I had to go off all medication. In combination with regular pregnancy fatigue and nausea, my narcolepsy had me bed bound/couch bound for three months. (I was able to go back on one medication after being cautious the first three months of the baby’s critical development.)

Something happened after my daughter was born though. I felt fine. I didn’t need the medicine anymore. One of the medicines that I took, Xyrem, I had to order from a private pharmacy over the phone to be delivered. It was only available this way because it’s the drug also known as GHB- a date rape drug. At first I had a hard time getting them to leave me alone because they couldn’t seem to believe I didn’t need the medicine.

I could literally hear the shock in one man’s voice when he said, “That is wonderful, but… This never happens. Usually, symptoms come back worse after weeks without this medicine.”

It wasn’t just my pharmacy that was baffled. I have been to two doctors, both neurologists, one a sleep specialist, that had never seen anything like me- they looked at the sleep study data, asked me questions, but couldn’t tell me how I could be diagnosed with narcolepsy, having sleep study results that absolutely confirmed it, and then be free of narcolepsy symptoms. Narcolepsy does not just go away. It is a life-long incurable disease.

I may still have some health problems that I don’t know the cause of and unanswered questions, but… I’m in a much better place than I was a little over a year ago. Do you know how much it sucks to not ever feel NOT sleepy? To be terrified by hallucinations almost every night. To literally have time stolen from you because half of what would normally be waking hours get taken over by sleep? I did, but not now! Why? Because God healed me. I truly believe that is the only way this happened. In my place of desperation and suffering- a real rock bottom for me, I had taken hold of my belief in God like never before. I prayed constantly. I lived my life for Him because He was the only thing I had to cling to, the only thing that kept me sane. I believe that my prayers, the prayers of others, my complete absorption of Him and wanting to live for Him enabled God to heal me… when I finally had the guts to ask him to that is, which was when I finally believed it was possible. That was just a month or so before my daughter was born! I believe God is going to continue to heal me.

So, there you have it. A miracle 🙂

Now I have more fodder for my memoir that isn’t just a memoir because it starts with my family legacy, which is full of miracles.

 

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5 thoughts on “NO more N

    1. Still gone! I am a mother of a toddler (My little girl is two now) that wakes me up at night a lot and my husband comes in late so I usually stay up to see him. Thus, I do voluntarily take a nap when my daughter takes her nap on some days, but only when I want to! It’s totally different than the days when I had no choice 😦 I have had other health problems that are definitely not narcolepsy (before you think that I did not ever have N. I did consider that, but since my symptoms were exactly N symptoms, including the symptom exclusive to N: cataplexy, and my sleep doctor and another sleep doctor I got a second opinion from both said it was not possible to get false data on the MSLT test that was done. They were sure however by asking me how I felt and having me do the questionaire that rates your risk of having N that I could not possibly have it anymore. I could tell they were pretty uncomfortable with the idea lol. Add to that the synchronicity of praying and believing I would be healed just a few weeks before I actually was healed (January 2014), and it isn’t too strange to believe that it is actually a miracle. The closest to diagnoses for the symptoms I was having in the summer 2014 was fibromyalgia, which I think maybe I developed that from the narcolepsy and it was still hanging on to me. I also deal with IBS, I don’t know if that could have been from having N because my brother and sister also have IBS and have never had N. I got tired of going to doctors for help with the fibro type symptoms and took my health in my own hands by exercising and eating healthier. All the times I took prescription meds in the past always seemed to effect my health, even when it also helped me. Ritalin for instance when I had N made me have palpitations and since then I will still have them when I get too stressed. I read a book called “Real Cause, Real Cure” by Dr. Jacob Teitlebaum that really helped me on my journey to a healthier lifestyle. These days, except for IBS when I slip up and eat too much stuff I shouldn’t, I am free from any symptoms of fibro or any other possible problem.

  1. wow. absolutely inspiring and incredible. so joyful with you for your healing. hoping a similar thing will happen with me…

  2. I just got diagnosed this week after 10 years of only sleeping when my body absolutely could not take any more and i would collapse. It ruined my marriage, years with my kids my career, everything. Since i woke up, yep, thats what it feels like to be sleeping for the last 3 months, that i finally woke up, even though i wasn’t sleeping. I begged my doctor for 10 years, please find out why im not sleeping, why am i hallucinating so bad, i was almost dead when i went to duke medical center and the doctor knew i had to sleep and my bp was 50/42 and he was scared i wouldn’t make it through the night, he put a sitter to watch me sleep. Im on zyrem now, i feel better than i have in 20yrs, i look better, i can remember things that i have forgotten, like i still love my ex husband after being apart 10 years, thats the hardest thing im dealing with. Im malnourished, my muscles are gone, but, never felt better. Was in constant pain and now I don’t hurt, i cant explain it. Now im wondering what to do with my new life. I dont know what to do.

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