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Comorbidities In Narcoleptics/hypersomniacs [The Big List]


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Poll: Comorbid Issues (39 member(s) have cast votes)

Without medication/alarms, how many hours per night would you sleep?

  1. Less than 5 hours (2 votes [5.13%])

    Percentage of vote: 5.13%

  2. 6 Hours (3 votes [7.69%])

    Percentage of vote: 7.69%

  3. 7 Hours (3 votes [7.69%])

    Percentage of vote: 7.69%

  4. 8 Hours (2 votes [5.13%])

    Percentage of vote: 5.13%

  5. 9 Hours (3 votes [7.69%])

    Percentage of vote: 7.69%

  6. 10 Hours (7 votes [17.95%])

    Percentage of vote: 17.95%

  7. More than 10 hours (9 votes [23.08%])

    Percentage of vote: 23.08%

  8. My sleep duration is extremely random with no average sleep time. (10 votes [25.64%])

    Percentage of vote: 25.64%

Without medication/alarms, how would your sleep cycle progress over time?

  1. I have a normal sleep-wake cycle. (8 votes [20.51%])

    Percentage of vote: 20.51%

  2. My sleep-wake times advance 1-2 hours each night. (9 votes [23.08%])

    Percentage of vote: 23.08%

  3. My sleep-wake times recede 1-2 hours each night. (0 votes [0.00%])

    Percentage of vote: 0.00%

  4. My sleep-wake cycle is completely random, with no patterns observed. (22 votes [56.41%])

    Percentage of vote: 56.41%

In addition to narcolepsy/hypersomnia, do you have any of the following conditions?

  1. Seasonal Allergies (Pollen) (22 votes [12.72%])

    Percentage of vote: 12.72%

  2. Year-Round Allergies (Dust Mites, Molds, Cats, Dogs, etc.) (18 votes [10.40%])

    Percentage of vote: 10.40%

  3. Food Allergies (Peanuts, Soy, Wheat, Milk, Egg, etc.) (10 votes [5.78%])

    Percentage of vote: 5.78%

  4. Autoimmune Disease (Sjogrens, Rheumatoid Arthritis, Celiac Disease, Chron's, etc.) (7 votes [4.05%])

    Percentage of vote: 4.05%

  5. Anxiety (20 votes [11.56%])

    Percentage of vote: 11.56%

  6. Depression (Any type, including Seasonal Affective Disorder) (18 votes [10.40%])

    Percentage of vote: 10.40%

  7. Other Mood Disorder (1 votes [0.58%])

    Percentage of vote: 0.58%

  8. Irritable Bowl Syndrome (8 votes [4.62%])

    Percentage of vote: 4.62%

  9. Dysautonomia (Orthostatic Hypotension/Hypertension, Inappropriate Sinus Tachycardia, etc.) (2 votes [1.16%])

    Percentage of vote: 1.16%

  10. Sleep Apnea (5 votes [2.89%])

    Percentage of vote: 2.89%

  11. Acid Reflux, GERD, peptic ulcers, or other stomach condition. (6 votes [3.47%])

    Percentage of vote: 3.47%

  12. ADD/ADHD (10 votes [5.78%])

    Percentage of vote: 5.78%

  13. Hypogonadism, Hypopituitarism, or Hypothyroidism (3 votes [1.73%])

    Percentage of vote: 1.73%

  14. Hyperthyroidism (0 votes [0.00%])

    Percentage of vote: 0.00%

  15. Tinnitus, not due to medication. (9 votes [5.20%])

    Percentage of vote: 5.20%

  16. Excessive sweating and/or cold hands and feet, not due to medication. (15 votes [8.67%])

    Percentage of vote: 8.67%

  17. Dry mouth and/or eyes, not due to medication. (9 votes [5.20%])

    Percentage of vote: 5.20%

  18. Insensitivity to benzodiazepenes (Xanax) [That is, they affect you much less than expected.] (2 votes [1.16%])

    Percentage of vote: 1.16%

  19. Hypersensitivity to benzodiazepenes (Xanax) or other CNS depressants (alcohol) [That is, they are strongly sedating.] (5 votes [2.89%])

    Percentage of vote: 2.89%

  20. Insensitivity to methylphenidate (Ritalin) [i.e. it has almost no effect, either positive or negative.] (3 votes [1.73%])

    Percentage of vote: 1.73%

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#1 Chemist

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Posted 08 September 2013 - 04:01 PM

Hey all,

 

I'm interested in gathering some information on some common comorbidities in narcoleptics and/or idiopathic hypersomniacs, and I think this information might prove interesting for others as well. I would love to see everyone who's an active member participate in the poll and also share in the thread any other medical conditions they have that weren't covered in the poll if they're comfortable doing so. Note that the poll is not public so your answers are private. One particular thing I'm interested in is how prevalent long sleep times (>8 hours) or circadian rhytm issues are within the community.

 

When answering the questions relating to sleep duration and sleep-wake times it's critical that your answers reflect how you would sleep WITHOUT medication, alarms, or obligations. I realize that might be difficult for people who have been taking medication regularly for a very long time or who have had regular obligations (e.g. work) for a long time. You might have to think back to a long vacation or in the worst case waaaaay back to your high school summer vacations or some other time when you had no obligations affecting your natural sleep-wake cycle.

 

For the poll I tried to choose medical conditions that were related, or potentially related, to inappropriate immune response, endocrine disorders, dysregulation of one or more catecholamines, and mood disorders.

 

I suspect it will take a few weeks before we build up an appreciable number of responses. After all, we're all tired here and have other obligations in our lives that have to be taken care of, but vote when you can I look forward to seeing how the poll develops over time.



#2 ironhands

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Posted 09 September 2013 - 09:30 AM

I'm very interested in seeing how many are aware of comorbidity with gluten issues.  I'm really wondering how many people aren't aware of any intolerance they might have as well.



#3 Chemist

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Posted 09 September 2013 - 03:30 PM

I'm very interested in seeing how many are aware of comorbidity with gluten issues.  I'm really wondering how many people aren't aware of any intolerance they might have as well.

 

I've been tested for celiac disease which came back negative (no autoantibodies). However later I had an allergy panel done (skin prick) which included wheat and surprisingly I do have a wheat allergy. Wheat allergy is of course distinct from celiac disease and much less severe of an issue. It may help explain why every time I've tried pancakes I get violently ill. I don't have such a severe reaction to wheat bread or pasta, though. It's strange.

 

In any event, if people think they're having issues with wheat/gluten in their diet they should definitely get checked for celiac disease or wheat allergy before deciding on a wheat/gluten free diet. It's not an easy diet to pull off, nor is it a very cheap diet if you still crave bread products and have to buy gluten free ones. Last but not least, just as many people are allergic to soy as are allergic to wheat, so if you end up with more soy in your diet as a result of avoiding wheat, and you're allergic to soy, you're in no better a position. Even though I know I'm moderately allergic to wheat now I still eat toast and sandwhiches from time to time. They're very hard to replace! And delicious.



#4 ironhands

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Posted 09 September 2013 - 03:46 PM

Gluten free breads taste like crap.  I still eat breads regularly until I finally get sick of the side effects, I should probably be checked for both.  I don't have a violent reaction, at least, until a few hours later.....  Especially with beer.  Rice pasta's worked well for me, usually have it twice a week.  Tamales on the weekend too.

 

Maybe the gluten issue can cause a secondary narcolepsy effect?  Seems strange to not be related in some way.  Both are autoimmune, and both are present on HLA-DQB1.  Be nice to see a proper study some day.



#5 slo.mo.a.go.go

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Posted 10 September 2013 - 09:40 PM

Chemist- thanks for this poll These questions cover areas that could use some illumination. your clearly defined parameters are much appreciated.

 

i share your interest in the prolonged sleep/circadian rhythm issues, especially since i get the sense that the research is only starting to scratch the surface of how disordered/incomplete sleep stages might be a general health complication for many people & medical conditions and that our sleep needs more effective measurement & treatment options. For example: the disrupted sleep patterns of those suffering from depression. They had a significantly different sleep stage pattern. Their sleep more closely resembled the pattern of those w/ circadian rhythm disorder.    

 

I don't want to hijack the discussion to be only bout gluten allergies but it does relate to the poll. here's my basic gluten info. I have a gluten allergy (dx'd 10yrs ago). My gluten allergy is textbook def of an allergy, meaning my symptoms to gluten are just like many consider "hay fever" i.e. runny & itchy nose, itchy & watery eyes (i can't wear contacts if i eat gluten), congestion that causes me to snore + wake up w/ painful sore throat and triggers my asthma.  For me, these symptoms are controlled completely by avoiding gluten.

 

My allergic response to gluten has a range in severity dependent on the:

A. prep of the gluten (i.e. fermented uses are a big no-no for me. Example -beer or some soy sauces that use fermented wheat cause severe allergic symptoms for me. If I accidently eat a soy sauce type w/ wheat, I'll have to take out my contacts, use my inhaler and snore for a night [which I only know about bc my bf is a very light sleeper!]) or

B. level of processing (i.e. eating small amount of whole wheat causes mod. allergic response, while serving size of bleached white flour causes only mild allergic response.)

 

(GF Tangent -If there's not one already, I might start a gluten topic. There's a lot to discuss 'bout it. Gluten-free can be beneficial and it's a necessity for a few but I'm wary of any snake oil-type hype complicating this very complex issue/s.) 



#6 dormir 2

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Posted 13 September 2013 - 04:09 PM

I voted even though I don't have an official diagnosis of narcolepsy, just IH.    I was diagnosed with MS in July and have tried switching completely over to gluten free, carb free (minus fruit), no fried food, no meat, no dairy diet.  It is hard, but I think there are a lot of benefits to healthier eating, especially for people with any autoimmune and/or neurological problems.  



#7 sk8aplexy

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Posted 13 September 2013 - 04:17 PM

Dormir 2, am with you on the diet helping.  I make a lot of stir fry but use mainly coconut oil along with some olive oil, and I eat some meat still (but only local organic).  It is hard, but it sure definitely has made a difference, and across the many health matters I've had.  Had I done such a change way way back, I can only imagine how much pain and misery I may have avoided, but oh well am very glad to have made it, this far...



#8 Chemist

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Posted 14 September 2013 - 12:29 AM

I'm sitting here reading these new posts about wheat/gluten issues while drinking a wheat beer even though I know I'm allergic to wheat. Oops!

 

Also got a chuckle out of the fact that apparently no one who has voted thus far sleeps the typical 8 hours a night. Several people do share my sleep patterns though (10 hours duration and 1-2 hours advance daily) which is interesting.

 

As far as these posts on diet, I'll reiterate that people should probably get tested for wheat allergy, celiac disease, or other food allergies before deciding to elimate them from their diet permanently. Mainly because many people have a problem eating a balanced diet even without excluding things.

 

To those who have already switched their diets, make sure you are getting all essential amino acids and vitamins. When you cut out the traditional meats, breads, etc. it is not simply "common sense" what you need to eat to include the essentials in your diet. Especially on completely vegan diets, as even eating all the correct foods still may not be enough if you don't eat enough of them. I'm a skinny guy who doesn't eat red meat, eats only small meals, and when I had my B12 checked it was literally borderline deficient even though I take a multivitamin. Now I just pop one of those 40,000% DV B12 supplements every now and again and levels are fine, but amino acid/vitamin deficiencies are definitely something you have to watch out for.



#9 dormir 2

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Posted 14 September 2013 - 06:30 PM

I'm one of the 10+ hours sleeper.  It is hard to cope without that much sleep.  I rarely get more than 9 though.

Agreed on the diet advice.

I'm saving up to talk to a nutritionist because essential fatty acids are hard to come by and I know I'm struggling with deficiencies.  I take hemp oil (not fish oil) and turmeric and ginger (antioxidants and anti inflammatory), but i know I'm still deficient in some areas despite MVI, high dose vitamin D3, and calcium.   Having deficiencies definitely doesn't help the fatigue or sleepiness issues!  I have taken to eating coconut butter (not coconut oil) for sweets cravings, but it's often not enough.  I like coconut oil for the fats, but usually try to use olive oil.  



#10 AnnieJoy

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Posted 14 September 2013 - 07:27 PM

Mine depends. When I was first going through diagnosis, I would sleep 12+ hours a day. Fall asleep in the car on the way home, and wake up in my bed the next morning, having to be ready for school, doing homework on the way there. Now it varies. If I am NOT on medication, caffeine (which sometimes makes me sleep more), or anything like that, I tend to sleep for about 10 hours. 
Before I was sick. I functioned my absolute best with 5-6 hours a night. Now, I'm lucky to get out of bed with 10. I try to keep a good sleep routine. But I always end up either staying up too late, sleeping in, or waking up many times in the night. I also deal with midsleep automatic behavior. Conversations I don't remember from the middle of the night, waking up in places I don't remember falling asleep in. So because of this on the survey I am going to put that my schedule is random. It seems like it is now and days. 



#11 AnnieJoy

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Posted 15 September 2013 - 07:36 PM

Well I slept for 15 hours last night... so.... 

 

Might need to edit my poll response. 



#12 ironhands

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Posted 15 September 2013 - 10:45 PM

I wish i could sleep that long.  I get anxious.  I spend most of my time at home in bed, but not sleeping, hard time napping because I "know" I shouldn't be sleeping.  Spent so many years pushing myself to stay awake, it's become deeply rooted.  I sleep from 12-7(with 7-8am spent in 15 minute snoozes) on weekdays, but it's never enough.  Always wake up at the same time each night, and often right on the minute - 2am, 4am, 6am (and no, there are no external triggers).  It's almost like my internal clock is always functioning.  N is defined to some degree as REM breaking through into the waking state, but, can the opposite be true as well?  Perhaps the wakeful state, in some cases, intrudes into the REM state.....   More than once I've awakened seconds before my alarm goes off, pick it up, and hit the button just as it goes off.  Strange stuff.



#13 AnnieJoy

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Posted 15 September 2013 - 11:25 PM

I understand that too though, ironhands. That's why I failed my mslt and am going around with N w/C without an on paper diagnosis. I trained myself to not sleep when it would be an inconvenience to other people. So hooked to wires, surrounded by a hovering technician--I couldn't sleep. Too angsty. Too tired to sleep. People do not understand me when I say you can be too tired to sleep. 
Anyone on this Forum understands that. 



#14 Chemist

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Posted 17 September 2013 - 10:18 AM

I'm actually pretty sure I have some kind of circadian rhythm issue. Possibly non-24 sleep-wake cycle disorder. I usually sleep ten hours if not interrupted and go to bed one to two hours later each night. My sleep time will advance all the way around the clock if I let it.

Obviously because of school, work, and other obligations I'm forced to keep a regular schedule, but that leads to periods during the day unrelated to narcolepsy when I really want to go to sleep, stimulants be dammed, and also periods where I have no desire to sleep when it gets to my bed time. For a few weeks every month or two I will also start waking up at night. It will be 1am, then 2-3, 3-4, 4-5, and so on. For a very short period once in a while things will sync up. It's always nice when that happens.

This didn't cause me any problems on the MSLT though. I thought it did, because I thought I hadn't slept much if at all, but in fact fell asleep almost every time. :P I made sure I was keeping myself mentally occupied and challenged in between the naps, though. I did organic chemistry problems nonstop. XD

#15 Megssosleepy

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Posted 26 September 2013 - 02:28 PM

Before being on meds I would fall asleep on a drop of a dime, but staying asleep?  It's weird though my phone could be ringing by my head or a huge storm could be raging outside and I could sleep through it.  But, when all was dark and quiet I would wake around 2am and keep waking up every half hour till my alarm went off.  Storms and other noises tend to enter my dreams rather than disturb me. 

 

I think that the reason some have such a hard time staying asleep at night is due to the fact that we fight sleep all day, so when its time to sleep our bodies don't know how to let us stay asleep. 

 

I don't think I have any problems with wheat or gluten, but about 2 years ago Dairy started bothering me. :( I miss ice cream and pizza!



#16 phreadriquebean

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Posted 15 October 2013 - 02:48 AM

My sleep schedule is all over the map.  Sometimes I get 4 or 5 hours of sleep and wake up feeling more refreshed than if I'd had more sleep.  Most of the time, I sleep about 10 - 12 hours.

 

I also have hypOthyroidism.  I saw hyper was listed, but not hypo... don't know how the relations would differ though I know that the symptoms are essentially opposite.

 

I wanted to touch on the Celiac testing.  I was diagnosed with Celiac in 2005, 2 years before my N diagnosis.  I had been almost entirely asymptomatic (just mild anemia over the years) until I was 23 and thought I had food poisoning - but it didn't go away for over a week.  My blood test was negative and my understanding is that the test has a very high rate of false negatives so if you have the test done, it doesn't necessarily mean you don't have celiac.  Because of my family history (of ulcerative colitis, not celiac) I was still referred on to have a colonoscopy and the doctor didn't even have to wait for the pathology report to tell that I had Celiac because it had caused so much damage to my stomach lining.  Basically, if you try a gluten free diet and it does help, you likely have either celiac disease or an allergy.  If you don't notice any difference, it's not worth it to stay on the diet.

 

All that said, one of the first things I noticed after going gluten free was that I would fall asleep within a few minutes of eating anything with gluten in it.  I used to cheat (during the first couple of years after diagnosis) and it was very consistent.  I don't cheat anymore because my physical reactions are so bad, but if I accidentally ingest gluten, the first symptom is always sleep.



#17 Chemist

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Posted 15 October 2013 - 11:43 PM

My sleep schedule is all over the map.  Sometimes I get 4 or 5 hours of sleep and wake up feeling more refreshed than if I'd had more sleep.  Most of the time, I sleep about 10 - 12 hours.

 

I also have hypOthyroidism.  I saw hyper was listed, but not hypo... don't know how the relations would differ though I know that the symptoms are essentially opposite.

 

I wanted to touch on the Celiac testing.  I was diagnosed with Celiac in 2005, 2 years before my N diagnosis.  I had been almost entirely asymptomatic (just mild anemia over the years) until I was 23 and thought I had food poisoning - but it didn't go away for over a week.  My blood test was negative and my understanding is that the test has a very high rate of false negatives so if you have the test done, it doesn't necessarily mean you don't have celiac.  Because of my family history (of ulcerative colitis, not celiac) I was still referred on to have a colonoscopy and the doctor didn't even have to wait for the pathology report to tell that I had Celiac because it had caused so much damage to my stomach lining.  Basically, if you try a gluten free diet and it does help, you likely have either celiac disease or an allergy.  If you don't notice any difference, it's not worth it to stay on the diet.

 

All that said, one of the first things I noticed after going gluten free was that I would fall asleep within a few minutes of eating anything with gluten in it.  I used to cheat (during the first couple of years after diagnosis) and it was very consistent.  I don't cheat anymore because my physical reactions are so bad, but if I accidentally ingest gluten, the first symptom is always sleep.

 

 

Hypogonadism is on the list. It's lumped in with other endocrine deficiencies and is listed as "Hypogonadism, Hypopituitarism, or Hypothyroidism"

 

The blood tests are fairly good for Celiac disease. They have a sensitivity of about 90% and a specificity of about 99%. If there's still suspicion of Celiac disease after a negative blood test, it can always be repeated or a biopsy taken. A blood test for celiac and a skin prick test for wheat allergy are probably the best things to start with because they're quick, easy, and sensitive. Plus, as you mentioned, not everyone who has Celiac disease is symptomatic, and in those cases a gluten-free diet may not make such a profound difference that the person recognizes that they have the disease. If we were to consider a gluten-free diet a diagnostic test and calculate values for sensitivity and specificity, we would find them to be exceptionally less than the sensitivity/specificity of both the skin prick test and blood tests.



#18 ironhands

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Posted 16 October 2013 - 08:25 AM

I had to fight with my doctor to get the celiac blood testing, even though I'm paying out of my own pocket for it.  Still waiting on the results; but I know I feel like crap after I eat it.  Hard to determine how quick/severe it is, but I know I get progressively worse over the course of a few days if I go on a "regular" diet.