Narcolepsy warning signs- treatment options available (my personal experiences)

Hello again!  As you may have read in my previous blogs, I collect illnesses.  That sounds horrible but gosh, if I have to have them, the least I can do is joke about them!  My newest addition is Narcolepsy, a disease in which I fall asleep during inappropriate circumstances.
I could remember falling asleep in classes as far back as 7th grade.  It would only be for 2 minutes at a time, and maybe only 3 or 4 episodes a week.  I always figured it was because I did not sleep very well the night before.  I had seen others fall asleep in class, so to me, it seemed normal.  I could also remember having very vivid dreams, and lots of them.


Throughout my high school years, I remained at a constant 3 to 4 episodes of short, inappropriate naps a week.  College was the year that everything started becoming more frequent, however, and I would be snoozing in class on a regular basis.  My naps would consist of no more than 2 minutes, however my eyes would feel so heavy throughout the day that everything would turn to a blur the minute I sat down.  Do not ask me why, but I still did not think anything of these strange experiences.  I just kept blaming everything on lack of sleep.


You have to understand that I was diagnosed with Lupus in 1999, so by then I had attributed any sort of strange symptom that popped up as Lupus related.  Lupus patients often suffer from sleep disorders, so I just lumped myself into one of the statistics.  No need to look further into the situation, as I already get poked and prodded enough each month for bloodwork.


Funny thing is that I NEVER thought that I had any sort of issue with sleeping other than being tired due to my weakened immune system.  It wasn't until my husband, Brent, had pointed out that I fall asleep during very random situations that I may have a problem other than Lupus or the other two illnesses that I had been diagnosed with as time passed by.  He did many searches on the internet, and came up with Narcolepsy.


I checked out the symptoms of Narcolepsy and my jaw dropped... and then I fell asleep.... Just kidding!  No, really, I checked out the symptoms of Narcolepsy and had found that I was experiencing most of the symptoms!  Still, even with matching my symptoms, it was a strange thought that I could actually have Narcolepsy.  I made an appointment with my primary care doctor immediately, as I had been telling my rheumatologist for years about my extreme sleepiness and she never did anything about it.  My primary care doctor made an appointment for me to have 2 different sleep studies done.

I had symptoms such as falling asleep 7-10 times a day for up to 5 minutes at a time every single day.  I would fall asleep during a phone conversation, while watching a movie, and yes, you guessed it... even then too.  I had even been falling asleep at work on a more consistent basis.  I worked for a medical company and remember answering the phone for a patient, asking her to verify that her house was on fire.  When I dozed off, if I was in the middle of speaking, I would keep on speaking.  My words would become slow, slurred and jumbled.  I would not make a bit of sense.  My head would just bounce as I kept trying to keep my eyes open.  All I can think of is that I must have looked like one very drunk individual!  It was extremely embarrassing to fall asleep in public, but no matter how much I had tried, I could not control it. 


The sleep studies were ordered immediately.  The first sleep study, called a Polysomnogram, is an overnight study designed to test how well you sleep at night and if there are any disturbances.  The second study that I had done is called a Multiple Sleep Latency Test (MSLT), which consists of taking 5 short naps consisting of 20 minutes each the following day.  These nap time periods will show if a person is able to fall asleepduring each nap, how quickly, and if they fall into REM sleep. 


Well, needless to say, I passed with flying colors.  When I say that I passed, I mean that I fell asleep within the first 3 minutes of the overnight test, slept 93% of the time, and had many long dreams.  The following day I fell asleep during all 5 naps, as I was not allowed to have any caffeine.  I had been using caffeine for years to help me stay awake and was pushing 3 pots of coffee a day. 

I did not get my results right away, as they had to be sent out and analyzed by a sleep specialist.  I waited patiently for the doctor's office to call me and let me know of my results.  The day before the doctor's office called, I had the worst episode of sleepiness I had ever experienced.  I was at work and my body became heavy, tingly, and numb.  I could barely move my limbs, couldn't keep my eyes open, and couldn't talk.  My words were frozen.

When I was finally able to hold my eyes open long enough, I headed straight to the medical clinic inside of work.  I did not tell anyone where I was going, I just booked it.  By the time I got to the clinic I was exhausted again.  I tried to explain what was going on with me but I couldn't concentrate and my words were slurred.  The nurse on duty checked my vitals, all of which turned out okay, but was worried.  She wanted to call an ambulance because she was unsure of whether or not I was having a stroke.  I could barely move my mouth to talk.

Luckily, Brent worked in the same building with me and I was able to call him to have him bring me to the emergency room.  While in the emergency room, I had every sort of test you could possibly think of done.  All they were able to come up with in the emergency room was a Lupus and Fibromyalgia flare up.  I was so fed up with feeling so tired and having the same response that I grasped for any sort of answer other than a flare up.  I blamed it on the baked potatoes that I had eaten the night before (I always get a stomach ache from them, so why not?).  Brent kept shaking his head and telling me that it wasn't the potatoes.  He said that they may not have been my best potatoes, but they were not all that horrible!

I was discharged from the hospital with a big fat diagnosis of flare up.  I was told to rest for a couple of days before returning to work and to follow up with my primary care doctor, and to come back if symptoms became worse.  I was starting to think that I was making myself sick, and that this was all in  my head.  How on earth could no one find anything wrong with me other than a stinking flare up?

Well, it just so happened that the very next day I received a phone call from the primary care doctor letting me know that I did in fact have Narcolepsy and that he was referring me to a neurologist/sleep specialist.  It was not Lupus or Fibromyalgia related, and it was not in my head.  

I had my appointment with the neurologist/sleep specialist and he had explained to me that what I was experiencing was very normal for a person with Narcolepsy.  Better yet, there were medications that would be able to help me.

Hallelujah!  I was prescribed 200 mg of Provigil to take once to twice daily.  I started it immediately, and within days, I felt like a brand new person.  I did not know what to do with my lively self!  I watched a whole movie, I did not worry about talking on the phone, and I did not fall asleep in the middle of a conversation with Brent. 

Provigil has helped me tremendously, however I do find that I need to take it twice daily or half way through the day I need a nap.  The best part about taking a nap while on Provigil is that I can actually make it to my bed and nap in comfort.

I still have my good days and bad days with Narcolepsy, but I am so grateful that Brent had taken the time to research everything and push me to pursue this diagnosis.  Since being diagnosed I have fired my old rheumatologist and found a wonderful new one who listens to every single concern that I have.  I will not be placed on the back burner anymore for any unusual symptoms that may arise, as this diagnosis could have been made nearly 10 years ago!  

Prozac Side Effects - Anxiety!

I started Prozac on October 7th, 2009 in hopes that this medication will help with the depression I was experiencing from Lupus and Fibromyalgia. I had been on Celexa in the past, however, that had caused me to gain weight. I was already on Prednisone, and the Celexa just added that little extra push to make my weight a grand total of 169 pounds on my 5 foot 3 inch frame.

My neurologist had suggested that I try Prozac, as it could also be used to help control my Narcolepsy in conjunction with Provigil, another medication that I had just recently started. He gave me the usual side effect speech and asked if I wanted to try it. I said sure! Why not?

The neurologist had told me how to wean off of the Celexa and start the Prozac. We had a 3 week plan to get me completely switched over and onto a 30 mg daily dosage. By week two of being on Prozac, I had started noticing a difference in my moods. It had started out as me having small bouts of crying episodes for no reason. My husband would ask me what was bothering me and I couldn't tell him. I did not know.

At the start of week three came the heart palpitations and nervousness. I was constantly in a state of worry, feeling as if the world was going to crumble beneath my feet. I was on edge and any sort of noise would trap itself inside of my mind and consume me. I could not remember simple words or names of people; I would just stutter and random words would flow from my mouth. I was becoming a wreck.

By the time week four came around, I would have multiple crying spells a day every day. I would feel on edge in the morning from the time my feet hit the floor. Within an hour, my heart would start beating faster and my stomach would be tied in knots and I would be so nauseous that just the sight of food on television made me gag. If the phone rang, I would silence it. If the dog barked I would jump. If my children asked me a question, I would say no. It didn't matter what the question was, I just couldn't comprehend what they were asking. It was as if I was living in a foreign country and I didn't know the language.

One day in week five of Prozac I had forgotten to take my medication and it was then that I had realized that I hadn't cried but twice that day. I had made dinner and did not need a reminder that I was cooking. It clicked. It had to be the Prozac that was causing me to feel as if nothing was attainable. I had contacted my doctor's office and they had gotten me in to see my doctor within a two day period (thank you to my awesome friend Sharon, who just happens to be a nurse there).

At the doctor appointment I explained what was happening and how I was feeling. My mother went with me to my doctor appointment (as she or my husband always does), and the doctor had explained to us that the Prozac was causing anxiety attacks. He told me not to worry... it will go away once off of the medication. He said that I am going to be a B.O.W. for a little bit longer while weaning off of the medication, however I will not be plagued by this awful mess forever. I asked what a B.O.W. was and my mom laughed so hard I think her eyes were tearing... "bitch on wheels". Good to know that my doctor is not only an excellent doctor, but he's a bit of a comedian too.

It took me 2 days to get off of that dreadful drug and I am now onto the next. It is my 4th day of Cymbalta. Day 1, 2, and 3 went well, but here we go again... the heart is starting to flutter today. With my fingers crossed that this is just the tail end of the Prozac, I will do my best to take deep breaths and re-evaluate every situation that makes my eyes start to water.

***I would just like to say that even though I had a horrible reaction to this drug, Prozac is an absolute life saver for some people. Everyone's body reacts differently to medications, so please keep that in mind as you read my story. Thank you!***
P.S.- I'm down to 152 pounds as of today! Possibly from the anxiety, but at least its a start towards a healthier me.

Please be sure to check out my website Lissa's World for more useful information.

Applying for Social Security Disability Benefits

Hello! Filing for disability is a major life change and can be scary. I thought that since I am applying for SSD and there are many others out there in my situation I would allow you into my world and take you along for the ride to disability determination. So, hold on to your seats and lets dig in!

First of all, I would like to give you a brief background on my situation. I was diagnosed with Lupus (SLE) in 1999, when I was going into my senior year of high school. Then, in 2002, came Fibromyalgia; 2005 was Membranous Glomerulonephritis; 2009 was Narcolepsy. Along the way I had bits and pieces of my illnesses form into new illnesses. My skin Lupus is called Tumid Lupus (TLE), I have Thrombocytopenia, Raynaud's syndrome, 3 herniated discs, mood swings and bouts of depression, and the list goes on and on. Like I said, I am trying to make this as brief as possible so we can get to the good stuff! If you want to know more about my illnesses, got to the Mayo Clinic or WebMD website. These two sites are full of fantastic information.

Okay, so back to the meat and potatoes... the process! First thing you will want to do is call around to every doctor, hospital and clinic that has treated you for your illnesses and request copies of your medical records and diagnostic tests (blood work, sleep studies, x-rays, etc.). Some providers will mail your records to you, however if you are able to, I would strongly suggest picking up the records yourself. Pick up a 3 ring binder and organizer tabs to organize your records in. I organized my records according to doctor, with the most recent documents first.

After gathering your records, contact the Social Security Office and request an appointment to apply for disability benefits. There are several ways of applying for disability: by phone, by internet application, by walk-in at your local office, or by office appointment. I preferred to call for an appointment and apply for disability benefits at my local Social Security Office. There is a lot of paperwork to fill out, and I did not want to leave out any important information.

When I called for an appointment I was given a date that was two weeks out, which I found was just the right amount of time to schedule follow up visits with my doctors and inform them of my decision to apply for disability benefits. I had downloaded and printed out a form for my rheumatologist to fill out called a Physical Residual Functional Assessment (SSA-4734-U8). This form is approved for use in Social Security Disability cases, and I thought, why not get the ball rolling? I also had asked my neurologist to write a letter to Social Security regarding my disability that he is treating me for. My doctors are all on board with my decision to apply for disability benefits, which is a must for your case.

Some other things to consider as evidence of your inability to work may be your attendance record at your employment, notarized letters from your caregivers and friends who witness how your disability affects your life, and a personal affidavit. I will post excerpts from my personal affidavit in the blog following this one, or you may click here to read it now.

The Social Security Office sent me forms to fill out ahead of time and bring with me to my appointment. I filled out the forms at my leisure and in the comfort of my own home. I was able to take my time and make sure that I filled everything out as accurately and descriptive as possible.

My appointment went well. The appointment lasted about 20 minutes, and because I had brought all of the necessary paperwork, my work history, medical records, social security card and other form of ID, there was no delay in processing my initial paperwork.

Since attending my first appointment, I have received additional paperwork to fill out. Social Security is very quick with this paperwork and I had received the packets within a week of my appointment. This paperwork (form SSA-3368-BK) required me to write in greater detail about how my disabilities affect my daily life, what I used to be able to do before becoming disabled that I am no longer able to do, and lists of my medications and any side effects. It is extremely important to fill out this paperwork and send it back to Social Security within 10 days of the date of the letter sent along with the paperwork.

So, for now, I sit here and wait! I have submitted my records, had my office appointment, my doctor appointments, written my personal affidavit, and have filled out all of the paperwork sent to me thus far.

Please stay tuned as I go through my disability application! I will post more as I learn more, and my ultimate goal is to hopefully help others like me!

For more useful information, please be sure to check out Lissa's World.