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Forum: Autoimmune Diseases and Disorders


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November 18th, 2008, 12:10 PM
4littleLadybugs's Avatar Mega Super Mommy
Join Date: Jun 2006
Location: Small Hicktown, Oklahoma
Posts: 2,048
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Hey ya'll. My name is Jenna. Sara is my SIL (our husbands are brothers so yes our last names are the same, lol). My DH is Brandon. We met in college nearly six years ago and we lived across the hall from eachother in the co-ed dorms. We have two GORGEOUS children, Addisyn (Addie-Grace as she is so often refered to by so many in the fam especially miss Becca, Sara's daughter) sheis 2 1/2 and we have a 'new' baby boy who is 10 months old nearly and his name is Weston Vaughn (the Vaughn is a family name, not something I would have chosen personally, but he's the 3rd generation Vaughn and it was IMPORTANT to his daddy). Brandon and I were just married this past May, the cart before the horse situation as I am sure many of you can understand, LOL. After YEARS of being way too overly tired all the time and misdiagnosis after misdiagnosis, we recently found the actual problem and I was diagnosed with Narcolepsy.

As I am sure you are all aware, it's a disorder that causes uncontrolable bouts of EDS (which stands for Excessive Daytime Sleepiness which is what I figured the other poster was talking with her EDS post, because in my world this term is used OFTEN and I assumed that's what she was talking about, lol) uncontrolable unrges to sleep, and at times will 'take you out' without warning, LOL. I have fallen asleep while on the phone doing dishes not long ago and I smacked my head very hard on the counter that left a pretty little goose egg for a few days.

Aside from the inconvienience of falling asleep at inopportune times, it's a very real safety issue. Especially since I am a SAHM. The diagnosis for narcolepsy isn't a difficult one if you are infact suffering from the disorder, but diagnosing it is so often mistaken for other more common ailments like depression, bi-polar disorder, laziness, chronic fatigue syndrome and so many other things. The onset from when symptoms first present to a proper diagnosis is around 7-10 years and onset usually begin in mid-late adolescense around age 15-16. I was almost 16 when I first noticed the EDS and began falling asleep in class regularly. My junior year I couldn't physically wake up in time for my first hour class so with my mother's consent I skipped first hour for that whole year. I was always exhausted and dr. after dr. said it was stress, depression, and one even told my mom I was just lazy. I was so frustrated!! I thought "surely this isn't how everyone else feels all day long. They can't be this tired and still function the way they do!!"

I tried to adapt to the tiredness as best I could. If I tried real, REAL hard in the beginning I could keep from falling asleep sometimes if I focused on being awake and got up and moved around. I remember the first day I "gave out" and sleep hit me like a ton of bricks. I was working at KFC (my high school job) and I was waiting on my managers parents. I remember feeling so terribly nervous and all the sudden, boom I was out!! I had this crazy dream that felt like it was 5 hours long, and then I snapped awake and realized I had just "blacked out" and felt disoriented and began crying especially after hearing I was only out for 20-30 seconds. Later on I found out extreme moods can trigger the sleep attacks. Fear, anger, excitement all are commonly attributed to an instantanious sleep attack. This is known as cataplexy, which is common in NARCs.

When in college I was falling asleep more and more. I kept getting kicked out of my classes by my professors and told things like, "well if you find this so dull and boring you can just leave." It would piss me off so bad because I WANTED to stay in class. Hell, I had a 4.0 for goodness sakes! So I was sent to the school guidance councelor and after one very VERY brief (we're talking like 10-12 minutes tops) meeting discussing things she told me I was bi-polar (cause my moods altered rapidly which again is common in NARCs) and perscribed something called Abilify. I started taking that and my sleeping went from 14-16 hours a night to around 21-22 hours a day!! I was missing classes, only waking up to eat (and we are talking massive amounts of food) and to go to the bathroom. I stopped taking the meds again the councelors advice after 3 long weeks and I had gotten sooooooooooo far behind in all my classes that the semester was shot! Later found out that Abilify is an anti-psychotic that is supposed to 'calm' bi-polar people down like a seditive I guess and it knocked me out! Dr. Shwartz, my sleep specialist, said you should NEVER take any seditives/tranquillizers/or sleeping pills when you have NARC because it can alter the way the disorder effects you permanantly.

So finally after I had had my fourth baby, I decided I needed to do something drastic about the sleeping because it was now affecting not only me, but my kids, DH, and everyone else around me. I remember falling asleep on several occasions while Addie was up running around the living room for 2 and 3 hours at a time and I couldn't help it. My PCP initially suggested the NARC diagnosis possibility and put me on a medicine called 'Provigil' which is a medicine used to specifically only to treat NARC. After my follow up appt. with her along with 2 dosage increases and still nothing, she refered me to Dr. Shwartz, who I refer to as my saving grace!! When I met him I really had no hope of ever being as alert/awake/energized as the rest of the world since the Provigil my PCP had put me on didn't work. I had read that they commonly use Adderall (an amphetemine stimulant which they also ironically use for people with ADHD, lmao) to treat NARC, but I absolutel refused to take it. I didn't want the stigma that came with taking a script like that, kwim?! "Legal speed" people would call it and I thought I would be so ashamed to take it! Dr. Shwartz asked me to make him a deal on my first initial vist (just to add he is a sleep specialist, but also is a pulmonary specialist as well since the two usually go hand in hand). I had to take a 'breath test' where you blow in this machine as hard as you can for 20 seconds and they measure your lung capacity to see if that was contributing to my sleep problem. I only had 87% usage of my lungs and he knew straight away I was a smoker and asked if I had ever had asthma. I was honest and said I used to have it very badly as a child and that I "outgrew" it because I hadn't had an asthma attack in huge proportion since I was 21 (Sara was there too when that happened, lol). He laid the deal out to me like this. If he could get me awake and stay away with energy to boot, he asked me if I would give up smoking for good. I agreed and then told him I didn't think it could be done. He laughed and we shook on it.

When diagnosing NARC, you usually (and these are just from my own experience) have a sleep study run. Then they follow that the very next morning with a multiple sleep latency test (MSLT) which is like a daytime sleep study where you stay in this little room all day and you are allowed to watch tv, read, or play solitaire what ever but you could NOT go to sleep until they said to which was every 2 hours throughout the 8 out test. I think I fell asleep 2 when I wasn't supposed to and then everytime they said we could I would zonk out. After both of those they send you home with a machine you have to wear overnight for 3 days that blows air into your face to see if sleep apnea is the cause that records digitally you breathing patterns throughout the night looking for any breaks in your breathing. Then finally they do a round of blood work. After I had done all of these and so many Epworth Sleepiness Scale sheets to last a life time (which you have to fill out every day...uhhhhg!) my next appt. was wonderful. I was properly and professionally diagnosed with Narcolepsy-stage 1 and was told it is a progressive disorder that gets worse over time. There is no cure and no one knows for sure what causes it. Several things frustrated Dr. Shwartz about my misdiagnosis because he said it was so blatantly obvious after everything in my medical history. He talked about how when I told him about when I was a toddler how my mom was told that they thought I has 'psuedo' dwarfism because I was soooooooo tiny for my age and I didn't have the actual signs for true dwarfism. He talked about the fact I was very hyper active as a young child and how I did a 180 when I hit 16 or so. And the fact that I had been overweight most of my life. He told me that NARC occurs when the hypothalmus gland (which as I am sure you all know regulates hormones for every part-organ in your body) releases hormones ineffectively. Sometimes not producing enough of one hormone (the human growth hormone for instance and the reason I am so short just 5'1 but was only 4'11 in 9th grade) or produces way too much of other hormones (like hypocretin which is the hormone your body releases after eating turkey dinner on thanksgiving. Yeah imagine feeling that tired x10 everyday even after a good nights rest). People with NARC have a very unusally high amout of hypocretin in their bloodstream which is thought to be on source of the uncontrolable sleepiness. For all these reasons and my test results I was formally diagnosed.

Dr. Swartz said that it was also time to try a new med to find something that would work properly like Ritalin or Adderall. I reluctanly switched after much hesitation to the Adderall XR (xr=extended release) 20 mg capsules 3x a day. Yeah, that is how much of the Adderall it takes to keep me awake. My follow up after the switch to the Adderall was amazing!! I have never been this awake in my life!! I actually cried in the dr. office. He asked me if I would mind doing a midwest regional commercial if needed as a sucess story and told me I have until January to keep my end of our deal up and quit smoking or he will not accept me as a patient anymore. I would much rather be awake than smoke so DH and I are both quitting on the first of Jan. Dr. Shwartz also warned me about the dramatic weight loss that I would see (in the initial 2 weeks after the switch I had already lost 11 lbs!) and that if my weight dropped to low that I would have to go on a special diet and increase my caloric intake to 5,000 calories a day. So far to date I have lost a whopping 58 lbs now total since August 1st, but just since the Adderall I was switched to on Sept 26th I have lost an amazing 31 lbs. He said for my height and weight if I drop any lower than 110 he will put me on a modified diet BUT strongly suggested I DIDN'T let it come to that because if it does I will have to eat so much so often that I will need to practically double my meds for them to work because I have to take them on an empty stomach. So it's walking a fine line.

Blah blah blah I have just realized that I have rambled on long enough, LMAO!! If anyone would like any more info on Narcolepsy, possible causes (heredity vs environment vs chance), treatments, or support groups I've found just pm me. I am sure Sara can tell you that I have a tendency to talk your ear off. And if anyone has any info they have about NARC and would like to share I would love that as well.

If you made it this far, thanks for the read ladies!!
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November 20th, 2008, 08:13 PM
Becca's_Mommy's Avatar Becca's Mommy
Join Date: Jan 2006
Location: Oklahoma City, Oklahoma
Posts: 2,749
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LOL Always full of information! Glad have you around the AID board. Hope we can get it going again! I need to get find the time to message some of the MIA girls and check up on them.

Hope you can get back on your ER meds soon!

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January 3rd, 2009, 09:05 PM
Mega Super Mommy
Join Date: Jun 2007
Posts: 2,514
Just lurking...but I wanted to say that I'm so glad you finally rec'd the propper diagnosis and that your treatment seems to be working well! I use to work at a sleep lab and it's really rewarding when you see someone come through your lab and have the propper studies done and receive the right diagnosis. Best of luck as you quit smoking!

Thanks for my siggy .:shortcake:.
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