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Should I Cancel My Sleep Study/mslt?


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#1 BeeBee

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Posted 12 December 2013 - 11:08 AM

I just discovered this site and feel so much better to hear all the stories and people I can relate too! I'm not alone!

Anyway, here goes.

I am a 5'9", 165 lb, physically active and lifelong healthy 26 year old female and have struggled with daytime sleepyness as long as I can remember. The past 8 years have been particularly difficult, fighting to stay awake, yet still falling asleep while driving, hanging out with friends, even walking! I stated getting SP when I was 20, with chronic SP almost every single night(sometimes 10-15 times/night!) for about 4 years. I have had many HH, and still occasionally have SP, especially during late morning naps. And now, after getting a better understanding of what cataplexy is and some of the signs and symptoms, I believe I have definitely experienced it many times as well. So what's the question?

Let me back up to about a year ago when (completely unrelated, I know) I started seeing my general practitioner about abdominal pain. They went from one hunch to another, one prescription to another. The pain got worse, more defined. In August I saw a gastroenteroloist and was schedualed for and EGD in October, longest wait of my life. Found nothing. Higher dose meds.

Being so frustrated, and finding no answers, I went back to my GP determined to feel better one way or another. And that's when I finally decided to ignore the lifelong titles of 'lazy' and 'disinterested' and my husband telling me to drink more coffee and stop being so forgetful and started pressing for answers to my 'chronic fatigue'. After telling her my symptoms, I was immediately referred to a sleep specialist.

And I heard, "What took you so long?!" "What do you know about narcolepsy?" "You are textbook." I was then scheduled for an overnight sleep study and MSLT. I thought, "I have been waiting for this my whole life!" In the meantime...

My GP scheduled an abdominal ultrasound and CT scan. But before any of these tests, on November 26th I woke up HEALED! Although I didn't know it at the time. I was completely nauseous all morning, fever by the afternoon. No appitite(which is VERY unlike me) The next day I was nauseous in the evening. No more fevers. Still no appetite. Both tests ended up showing nothing abnormal and I'm not pregnant. Now over two weeks later,no nausea and still hardly an appetite, stopped my stomach meds 5 days ago, and stomach still feels better than it has in a year. So how is any of this related to narcolepsy?

With all of this 'magical healing' came the feelings of anxiety and feeling 'cracked out' as well as mood swings. I still have daily periods of brain fog but not near as many or severe episodes of overwhelming desire to fall down and sleep as I did three weeks ago and the rest of my life previously. And when I go to sleep it actually takes me up to a few minutes to fall asleep rather than the usual 10 seconds or so.

So my questions are:
Could this just be anxiety about my upcoming sleep study?
Anxiety that my abdominal pain might return?
Could my sleep be affected by the fact that I am eating half as much as I was three weeks ago?
Doesn't this seem to be related somehow?
Should I wait this out and reschedule if my severe symptoms return?
Do you think if there is a problem with my sleep(narcolepsy or otherwise) it will be detectable regardless of the last couple weeks feeling completely unlike myself?
Has anyone else had 'anxiety and/or inexplicable health related narcolepsy remission'? (I know I just made that up, but you get the point)

I feel like I've waited my whole life to have my sleeping evaluated. I don't want it to be misrepresentative of what is 'normal' for me. I also want to get pregnant soon which could affect my chance to reschedule and have an accurate study. What should I do? I love having people to talk to about this.

#2 smileyh

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Posted 12 December 2013 - 01:06 PM

So, for 8 years you have had ESD, HH, SP and possible cataplexy. A year ago you started having abdominal pains that have since gone away. I would go ahead with the sleep study based on the 8 years of N symptoms rather than cancel it based on a recent change in unrelated symptoms. I could be wrong, but I don't think it will be misrepresentative.



#3 Ferret

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Posted 12 December 2013 - 02:41 PM

Go for the sleep study and get that sorted out. Eight years of symptoms is a long time and I'm surprised you've waited 'til now.
Abdominal issues can come and go...at the moment it's gone...don't hold your breath if you think it's gone forever.
One thing at a time...start now.

#4 Hank

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Posted 12 December 2013 - 03:05 PM

Glad you are feeling better. Still go for the test- just make sure it is a PSG and MSLT conducted by a Sleep Medicine Specialist who knows how to diagnose Narcolepsy.

 

N does not go into remission and it is life long. Sometimes it is easier to manage than other times. Stress, anxiety, diet, and a host of other factors can make symptoms worse.

 

One of the problems from living with undiagnosed N is that our base-line for normal gets very skewed. We become so accustomed to feeling like $#%! that any improvement- even temporary- makes us feel like we are "well". We get used to miserable, so less miserable feels great.

 

Do get the tests so you know what you are dealing with. If you will be starting a family, it may be years before you can dedicate time to get this sorted.

 

A healthy (healthier) mother will be a great gift to your future children.



#5 BeeBee

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Posted 18 December 2013 - 10:19 AM

Thank you all so much for your responses. It is so nice to hear from others with similar experiences and symptoms rather than people who have no idea what it is like. I am going to go ahead with the sleep study and MSLT tonight(kind of nervous!) and hope to get some answers. I feel confident going into this after posting and receiving replies/advice and have been utterly exhausted the last few days so I feel like sleeping will not be a problem. Again, thank you all. Your thoughtfulness means so much. Now, let me try to stay awake until 10pm with 0 naps...I only had three yesterday...:)

#6 Ferret

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Posted 18 December 2013 - 10:36 AM

Wow, that took me back a while...I mean the "arrive tired for the study and try not to have any naps". :wacko:  My hubby took it really literally since he had to drive me 1 1/2 hours to the study. Me + car = nap. I lost count of the times that he wacked me on the arm every time my eyes closed in the car on the way down.