Jump to content


Photo

Narcolepsy Or Idiopathic Hypersomnia-Need Advice!

narcolepsy idiopathic hypersomnia xyrem mlst sleep paralysis

  • Please log in to reply
8 replies to this topic

#1 eph

eph

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Santa Barbara, CA

Posted 14 March 2013 - 01:30 PM


            Posts: 1
New Member

Send a PM
Give a Hug
        
 *I didn't intend to write such a long post, but I would GREATLY appreciate it if anyone could take the time to read it. OR just skip down to the last two paragraphs!!!

 

Before
I explain my test results I would like to explain a seizure-like
episode I had two years ago as one of my doctors said it may have been
cataplexy. At the time I was on 0.5mg of Klonopin a night for
sleep/anxiety and 10-20mg of Adderall a day for ADHD. I was also going
to UC Santa Barbara full time, working an average of 30+ hours a week
and had a boyfriend so I wasn't always getting enough sleep which was my
mistake.

I woke up one morning to go to work (I think it
was during midterms or finals but I'm not sure) for my crazy
over-bearing manager at Nordstrom. (Disclaimer: I now know that my
actions on this day may seem utterly stupid and I should have taken the
hint, but I was young, ignorant and intimidated by my co-workers.) I was
utterly exhausted and running on very little sleep so I woke up and
took 10mg of Adderall and drank a cup of coffee. I managed to get to
work and stood there for about an hour and realized that even after
adderall and coffee I was still reallyyy tired and felt woozy. I
mentioned not feeling well to my only co-worker that day who gave me a
*BEEP*y "I don't believe you, you're not going home" look along with a
sarcastic remark. For some crazy reason, I thought that maybe if I took
my ten minute break and drank a red bull that would help, so that's
exactly what I did.

I went back to work and felt worse
than ever: light-headed, tired, weak and mentally foggy. I couldn't
fight my fatigue so I left work and called and asked my boyfriend to
pick me up. As I was sitting on the bench waiting for him, my arm
started twitching uncontrollably, then my legs started and I wobbled
into my boyfriends car and he immediately started driving me to the
urgent care at student health. During the car ride, my whole body
started twitching (seemed like convulsions), my head was drooping
forward when it wasn't jerking to the side and I couldn't fully keep my
eyes open. When we got to student health he had to prop me up to walk me
in because in addition to the jerking, my legs kept giving out.

While
waiting for the doctor my head lolled forward at which point I laid
down. The doctor was utterly bewildered when he saw me, and quickly gave
me dissolving ativan which caused my symptoms to subside. He didn't
seem to think it was a seizure because I was conscious the whole time,
my eyes never rolled in the back of my head, my mouth wasn't foaming and
the episode was fairly long. He noticed a rash on my chest and
suggested first that I was having a panic attack and then that perhaps
the Septra that I was taking to fight an infection on my foot caused an
allergic reaction as well.

Even though the initial doctor I
saw didn't diagnose my episode as a seizure, I went to the ER a day or
two later to get a note for calling out of work because my neck was
killing me from the incident and I was totally drained and of course, my
boss didn't believe me and demanded a note. I briefly explained to the
doctor what happened and said the word convulsions so he immediately
diagnosed the episode as a seizure, so it was documented in the computer
system that I had a seizure. The hospitals and school health center
here have some weird connected computer system so by the time I got to
my psych and explained the incident, he read the ER doctor's notes that I
had a seizure. He listened to my quick explanation and said that while
it may have been an episode of cataplexy, it seems like it was a seizure
so he immediately took me off of adderall and mentioned that I should
go to a neurologist. In light of the situation, I think he made the
right call, but without medication, the next year of my life was a
struggle. Long story short, I ended up getting academically disqualified
so I lost my health insurance. I quit Nordstrom for a more laid-back
job and got back into school at which point I went back to the psych to
discuss my options. I had a neurological examination, EEG and MRI which
all had normal results.

I had a PSG and MSLT at the
end of January and results came back pretty normal for the PSG with 5
respiratory arousals and 41 non-specific arousals. I also had an episode
of sleep paralysis in the middle of the test which doesn’t show on the
test, but I definitely know what it feels like! In my MSLT I fell asleep
in all 5 naps with a mean sleep latency of about 12:54 and two sudden
onset REMS. It is important to note that I had horrible menstrual cramps
and anxiety all throughout the test, especially during the fifth nap
because I was so fed up of being woken up and couldn’t wait to leave.

The
doctor decided that while my sleep latency was too high to diagnose
narcolepsy, the MSLT was “highly suggestive” of it and ordered a blood
serum test. My blood serum test came back negative for the DBQ1*0602
allele. At my previous doctor’s appointment he said that if the test
comes back negative, he’s probably going to diagnose me with Idiopathic
Hypersomnia. He stated on the test results, “The test results are
negative. This means that some medications will not be approved by your
insurance. We will work around this. We will discuss more during your
follow up visit.” I’m assuming he’s referring to Xyrem not being
approved by the insurance company. Basically my dilemma is this: since I
have sleep paralysis, sleep paralysis hallucinations, VIVID dreams that I always remember,

muscle jerks at night sometimes, SOREM, and
possible (though highly unlikely at this point due to the blood test
results) cataplexy, I am convinced that I still might have narcolepsy in
which case I would like to at least try Xyrem as I’ve heard it can be
life changing for narcoleptics. Should I consider the painful and risky
spinal tap? Or should I just work with my doctor and wait until I can
take another sleep study? Or does my story seem standard for a diagnosis
of Idiopathic Hypersomnia?



#2 exanimo

exanimo

    Member

  • Members
  • 217 posts
  • Gender:Female
  • Location:Alaska
  • Interests:Snowboarding, reading, writing, poetry, hiking, camping, college, art, anthropology, history, biology, anatomy &physiology...

Posted 14 March 2013 - 03:29 PM

I don't know much about IH, so I'm not sure what a standard case of IH looks like. But it does seem like Narcolepsy shouldn't be outed just yet.

 

I guess if I were you, I would get a second MSLT done. 

You weren't on any medications when you did your MSLT, were you? They can affect the results, especially any stimulants. Including caffeine.

 

Two SOREMs in the naps is not normal, especially if your PSG was fairly normal. It seems that the sleep latency may have been off due to anxiety and your menstrual cramps. If you do get a second MSLT done, try and relax.

 

I do have some questions, that might help to get a better understanding of your tiredness. During normal days, do you take naps? Are you generally able to fall asleep rather quickly for these naps? What about your nights sleep? You mentioned that before you weren't getting enough sleep. What about now? Do you feel refreshed when you wake up in the morning? When do you begin to feel tired? What happens when you do feel tired? Could you describe an instance where you begin to feel tired and what happens? 

 

These questions will give a better indication of whether the sleep latency was off on your MSLT. 

 

I'm sorry to hear that things have been so hard for you. Dealing with fatigue, whether from N or anything else, is hard and causes many problems. I hope that you can find answers and the right treatment. :)



#3 eph

eph

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Santa Barbara, CA

Posted 14 March 2013 - 06:02 PM

Thanks so much for replying! My friends and family can't take my venting anymore and I feel like the doctors are always rushing me out of the door before I can explain anything.

 

Before I was perscribed Adderall and after I was taken off it (because of the above episode), I napped and now still nap EVERY day at least once a day. I wasn't on any medications during the MSLT as I stopped Klonopin (which I don't take daily anyway due to grogginess) a week beforehand as instructed but I drank a cup of coffee the day of the PSG.

 

I usually have to load up on caffeine to survive a day of work and when I'm at school even with caffeine, I nod out all the time.

If I read for a few minutes or eat a normal sized meal, forget it, I am done haha. I don't necessarily pass out at the table but I go into this stupor where I HAVE to lie down or put my head down on the desk/table and sleep. I know that I have SOREM most of the time when this happens because I always start dreaming whether I sleep for a few minutes or hours.

 

The best way to describe what happens when I fall asleep is when, before I suspected I had Narc, my boyfriend asked me how I fall asleep so easily because he was having trouble getting to sleep because of racing thoughts. I answered "It's easy, I'm always thinking, even when I am asleep. I just lie down and my thoughts are normal and then my mind takes off with them and my thoughts turn into dreams. Doesn't that happen to you?". His answer was no of course haha. I often feel like I am "awake" even when I'm sleeping. On either the second or third nap of the MSLT the technician came back and asked if I fell asleep and I told him I wasn't sure but there was a lady talking really loudly on the phone for like 10 minutes. He said there was an office next door but gave me this weird explanation of sleep-time illusions but didn't say anything else. Now I know why: it turns out that I fell asleep in about 2-4 minutes in both of those naps haha.

 

The only time I wasn't consistently getting enough sleep at night was when I was on Adderall and Klonopin and thought I was super woman so I over-extended myself. I still napped a lot even then though. Adderall helped me keep going throughout the day but if I was studying at home I would still take short 30 minute naps.

 

As far as my night sleep I often get sleep paralysis with HH and what my psych called myoclonic jerks, but they are random and don't happen every night. I always have vivd dreams that are nightmares more often than not and I remember them the next day. Sometimes I randomly wake up for a second and fall right back asleep and I always feel awful in the morning. I get my "stupor" within the first few hours of being awake but it's definitely the WORST in the afternoon. I always fall asleep between 1-4pm.

 

As far as IH I feel like sometimes I get "sleep drunkenness" which is a symptom and my naps are often hours long but that's usually only when I don't get a full night's sleep. I also have a reallyyy hard time waking up and miss classes and work despite 2 or 3 alarms but I never sleep 14 hours a day either which is typical of IH.

 

I'm so confused :wacko:



#4 corey91386

corey91386

    Member

  • Members
  • 59 posts
  • Gender:Male
  • Location:Central Ohio
  • Interests:Sports, Family, Feeling Better!

Posted 15 March 2013 - 03:22 AM

IH and Narcolepsy are very similar in symtomology, IH is dianosed when REM is not seen in a 2 of your naps during your MSLT. I have a lot in common with you. I was diagnosed with Narcolepsy by 2 previous doctors, I had a 3rd PSG/MSLT done by a doctor who was geographically more convenient for me to see. He wanted to have it for his own records. Well he diagnosed me with IH. What the hell???? Anyways I went to the last conference and had the Gene testing done aswell. I do not have the allele as well. This doens't give a definitive answer is what my new doctor tells me. I do have hallucinations, and I fell alseep in all 5 naps. The sleep techs marked rems in 4 naps. The doctor went back and rescored them as inconlcusive. So who knows. He still kept my Narcolepsy diagnosis so my insurance covers my meds (Xyrem and Madafinil)). Good luck!



#5 eph

eph

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Santa Barbara, CA

Posted 15 March 2013 - 02:35 PM

Well the unfortunate part is that I had REM in 2 naps but my sleep latency was a little too high. I guess I'll just have to take another MSLT when I can afford it :/

I've done a lot of research and I've noticed that the presence of the gene in Narc w/o cataplexy is much lower than those with cataplexy and also fairly low in people with familial narcolepsy (has me wondering about my dad...). It's frusturating that they attach so much diagnostic significance to a genetic test that only indicates a predisposition for the disease especially in your case with REM in all four naps!! I guess it is just a quick and easy way to confirm a dx narcolepsy but it seems strange that the doctors automatically resort to IH when the symptoms more closely match that of Narcolepsy.



#6 Tre

Tre

    Member

  • Members
  • 26 posts
  • Gender:Female
  • Location:South Jersey
  • Interests:Video games, Warmachine/Hordes, Knitting, Board Games, Hiking, Foreign Languages, Biology, Math

Posted 15 March 2013 - 07:23 PM

The genetic test in in no way definative.  There are cases where identical twins have the gene present...one has N and one does not.  Any injury or illness involving the head/brain/neck/spinal fluid can put you at risk.  I was one of these lucky folks and happpened to have my life altered by getting meningitis.  My mom and sister sleep alot and sleep walking, talking etc in general run in my mom's family.  But since my M I seem to have N....lol...yes I'm tired.

My original MSLT sounds like yours....2 naps with REM...one began before I was asleep.  Too bad nap number 3 the cleaning lady decided to pay a visit to the lab....without that nap my sleep latency was 5.6 min. (That was not counting nap # 3 with the cleaning lady banging trash cans)

Now a second doc wanted the test done...Horrible day...horrible night...took clonazepam just to sleep that night.  I mean who can sleep with jackhammers just outside the room.  No Rem on the naps and sleep latency for 3 out of 4 naps was exactly 11 minutes...who takes the exact same amount of time to fall asleep.  Not to mention the migraine from the jackhammers and construction work.  This doc wanted to say it was IH. 

Now anyone can have some N symptoms anytime in their life if the deprive themselves of sleep for long enough....but thats why we do the overnight to make sure you rested before the MSLT is done.  A third doc said the 2nd should not have redone the test.  One time is enough as long as you had enough sleep on the overnight and there were no factors (meds etc) that would cause the N like MSLT.  (SOREM and low sleep latency)

People can argue IH and N all day...IH people are supposed to have fewer but longer naps and no REM issues but honestly if someone is that sleep deprived at some point they are likely to have HH or sleep paralysis. So I think we have a ways to go before docs can definatively say one or the other unless you have extreme classic cataplexy on a regular basis then obviously it's N.

I also take at least 1 nap a day...that's now that I'm not working.  When I was working I could fall asleep at any slow moment.  Grading papers...lunch...red lights...I would fall asleep at every given chance and my husband found it impossible to really wake me...sometimes I would talk to him or move but not even remember it.



#7 exanimo

exanimo

    Member

  • Members
  • 217 posts
  • Gender:Female
  • Location:Alaska
  • Interests:Snowboarding, reading, writing, poetry, hiking, camping, college, art, anthropology, history, biology, anatomy &physiology...

Posted 16 March 2013 - 07:44 AM

Thanks so much for replying! My friends and family can't take my venting anymore and I feel like the doctors are always rushing me out of the door before I can explain anything.

 

Before I was perscribed Adderall and after I was taken off it (because of the above episode), I napped and now still nap EVERY day at least once a day. I wasn't on any medications during the MSLT as I stopped Klonopin (which I don't take daily anyway due to grogginess) a week beforehand as instructed but I drank a cup of coffee the day of the PSG.

 

I usually have to load up on caffeine to survive a day of work and when I'm at school even with caffeine, I nod out all the time.

If I read for a few minutes or eat a normal sized meal, forget it, I am done haha. I don't necessarily pass out at the table but I go into this stupor where I HAVE to lie down or put my head down on the desk/table and sleep. I know that I have SOREM most of the time when this happens because I always start dreaming whether I sleep for a few minutes or hours.

 

The best way to describe what happens when I fall asleep is when, before I suspected I had Narc, my boyfriend asked me how I fall asleep so easily because he was having trouble getting to sleep because of racing thoughts. I answered "It's easy, I'm always thinking, even when I am asleep. I just lie down and my thoughts are normal and then my mind takes off with them and my thoughts turn into dreams. Doesn't that happen to you?". His answer was no of course haha. I often feel like I am "awake" even when I'm sleeping. On either the second or third nap of the MSLT the technician came back and asked if I fell asleep and I told him I wasn't sure but there was a lady talking really loudly on the phone for like 10 minutes. He said there was an office next door but gave me this weird explanation of sleep-time illusions but didn't say anything else. Now I know why: it turns out that I fell asleep in about 2-4 minutes in both of those naps haha.

 

The only time I wasn't consistently getting enough sleep at night was when I was on Adderall and Klonopin and thought I was super woman so I over-extended myself. I still napped a lot even then though. Adderall helped me keep going throughout the day but if I was studying at home I would still take short 30 minute naps.

 

As far as my night sleep I often get sleep paralysis with HH and what my psych called myoclonic jerks, but they are random and don't happen every night. I always have vivd dreams that are nightmares more often than not and I remember them the next day. Sometimes I randomly wake up for a second and fall right back asleep and I always feel awful in the morning. I get my "stupor" within the first few hours of being awake but it's definitely the WORST in the afternoon. I always fall asleep between 1-4pm.

 

As far as IH I feel like sometimes I get "sleep drunkenness" which is a symptom and my naps are often hours long but that's usually only when I don't get a full night's sleep. I also have a reallyyy hard time waking up and miss classes and work despite 2 or 3 alarms but I never sleep 14 hours a day either which is typical of IH.

I'm so confused :wacko:

 

 

Thank you for answering those! To me, it sounds like Narcolepsy. But like I said, I don't really understand the IH all that much. I am guessing it just has a different pathophysiology than N does. But the fact that you have SOREM, EDS, HH and sleep paralysis, really points to N. 

 

But I'm not a doctor. Did you see a neurologist? Or a sleep doctor? Were you comfortable with them? I ask this because some doctors are not very good with Narcolepsy. There are some who won't even test for it or who really don't know what it is. If you are comfortable with your doctor, and they made you feel like they were listening and willing to help you, then there's no problem. But if they made you feel bad, by not listening or not helping to explain things to you, then perhaps you should look in to someone else. I think having a good doctor really makes a difference. I was lucky enough to find a great Neurologist the first time I went to one, with the possibility of N. He was great and I felt like he didn't rush me out the door as some doctors tend to. He listened and answered all of my questions as thoroughly as he could and explained treatment options thoroughly as well. This made me feel much more at ease.

 

I would definitely recommend getting a second MSLT done in the future, if you really feel the diagnosis was not correct. Like I said, it does sound like N to me. But I'm not a doctor, lol. Good luck, and I hope that whatever it is, you can find a treatment that works for you!



#8 eph

eph

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Location:Santa Barbara, CA

Posted 16 March 2013 - 09:17 AM

He's a Neurologist and a board certfied sleep specialist. I've seen a few doctors and so far I like him the best but I only had one appt. with him. I've been passed off to different doctors pretty much every time I go for an appt. for my sleep disorder which I think is a huge issue because due to the limited time in each appointment, I feel like there is no single doctor that is aware of all of my symptoms and full history. I'm definitely going to make it a priority to go into more detail about my symptoms at my next appointment.

 

I'm glad I'm not the only one who thinks my symptoms sound like N despite being negative for the HLA allele. I started to feel like I had gotten so used to the idea of Narcolepsy that I just couldn't let it go! Thank you for your input :)



#9 munky

munky

    Member

  • Members
  • 213 posts
  • Gender:Female
  • Location:near Little Rock, Arkansas
  • Interests:Too many to list. It takes up too much space.

Posted 20 March 2013 - 08:44 PM

It might not hurt to start both a sleep diary and a list of symptoms, something you can print out to take with you when you go to the doctor. Not only will it help you remember everything, but you can give a copy to the doctor, who will hopefully make it part of your records and therefore make it much easier to refer back to in the future. There are some excellent ideas for sleep diaries on the forums here, and a simple search should find them.







Also tagged with one or more of these keywords: narcolepsy, idiopathic hypersomnia, xyrem, mlst, sleep paralysis