Jump to content


Photo

N Vs Ih


  • Please log in to reply
21 replies to this topic

#1 jmb521

jmb521

    Member

  • Members
  • 6 posts

Posted 06 October 2013 - 03:33 AM

I have scheduled my mslt in about 2 weeks and I have some thoughts and or questions.

 

I had a sleep study about 2 years ago and back then my doctor said that I have excess rem sleep, specifically around 33%. At the time, I remember my doctor mentioning Narcolepsy as a possibility and I was supposed to have a follow up but I forgot and so did the office (I had asked them to call me to follow up in 6 months). Anyways, fast forward to several months ago and I'm still having problems with daytime sleepiness and my doctor ordered another sleep study because I am having trouble waking up in the morning and before doing that he had upped the pressure on my cpap and things weren't working, so he wanted to figure out what was the correct pressure. Again the test results came back saying that I had more than normal amounts of rem sleep. He said to wait another month to see if my daytime sleepiness went away. The only difference this time is he is mentioning that he thinks I have Idiopathic Hypersomnia. Based on my symptoms, I think it may be narcolepsy without cataplexy. 

 

I went on a gluten free diet because I noticed an association between eating gluten and feeling tired. I will pass out anywhere from 20 minutes to an hour depending on how much I've eaten and how long it takes to wear off. I have been on that diet for about 2 years now. I can usually tell if I've had gluten as I will suddenly get hit with a sudden urge to take a nap, which I then start a sleep wake up cycle.

 

I have a vitamin D deficiency that doesn't want to go away. 

 

I have fallen asleep after laying down in bed but before I can get my cpap mask on or turning the light off. Usually waking up at some point to turn the light off, confused as to what happened.

 

I have woken up confused about what time it is, day it is, what I was doing before I went to sleep. 

 

When taking a nap at work, I have had dreams (during a 15 minute break). These are naps that I choose to take.

 

I have fallen asleep holding keyboard buttons down while at work. 

 

I fall asleep while reading almost on a daily basis.

 

I don't sleep a lot at night some nights. If I get around 5 hours, I can function and don't get the headache or crankiness that I usually get with 8 hours of sleep. I often will fall asleep on the couch in the living room watching tv around 11 p.m., wake up around 1 a.m. go up to bed and get up around 6 a.m. to go to work. I then spend hours fighting off sleepiness.

 

I'm starting to wonder if my doctor is trying to spare me the requirement to report narcolepsy to the dept of motor vehicles. I don't know if that's what he's thinking or if he really thinks that I have IH. 

 

 



#2 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 06 October 2013 - 09:20 AM

That could certainly be the case, but TBH if there's no cataplexy, your treatment/medications will be identical, IH is just a fancy was of saying you're tired and they don't know why, and don't wanna/can't label it as N.  In terms of symptoms, those with IH don't seem refreshed after they take a nap.  When you do, do you feel refreshed?

 

Also, have they ever given you the MSLT, or just the overnight PSG?  

 

I wonder if they're ever going to look into the gluten connection at Stanford... I'm getting the antibodies checked tomorrow morning.



#3 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 06 October 2013 - 02:22 PM

It's not the gluten that makes you sleepy -- it's the carbs.  Sounds more like narcolepsy than IH.  Being refreshed after a nap isn't a good indicator of narcolepsy vs. IH.  What is your REM AHI on CPAP?



#4 jmb521

jmb521

    Member

  • Members
  • 6 posts

Posted 06 October 2013 - 11:29 PM

It's not the gluten that makes you sleepy -- it's the carbs. Sounds more like narcolepsy than IH. Being refreshed after a nap isn't a good indicator of narcolepsy vs. IH. What is your REM AHI on CPAP?


I beg to differ. I have passed out when having oatmeal about 20 minutes after. If I eat the same account of gluten free oatmeal, I don't have the same reaction. I've also eaten no carbs all day long and still felt tired abd fallen asleep later in the day. Glutened sleep is different than just falling asleep. If you research it, I'm not the only one with this problem with gluten.

Unfortunately I don't know what my rem ahi was. I don't think they ever told me.

As far as the naps go, I have felt better after having one.

#5 Potato

Potato

    Member

  • Members
  • 335 posts
  • Gender:Male
  • Location:Indiana, US
  • Interests:Chemistry, Medicine, Science, Computers, Traveling, Not Being Tired

Posted 07 October 2013 - 11:36 PM

Gluten is just a protein complex and unless you either have a food allergy towards gluten, or you have an autoimmune reaction due to cross-reactivity with gluten, your body should treat it like any other protein during digestion. As such, if you're having issues with fatigue after eating gluten-containing foods, you should be tested for a food allergy as well as celiac disease. Celiac disease seems unlikely, though, if your only symptom is post-meal fatigue. If you're shown to not have an immune response to gluten, then the issue must lie with something else.



#6 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 08 October 2013 - 01:14 AM

I was tested for both.  The test for celiac is nice -- they ram a snake down your throat with a camera and take biopsies.  Worst experience ever if you are awake.  I was lucky and got scoped at the other end at the same time (colonoscopy), so I was knocked out with propofol.  What you refer to is called postprandial somnolence.

 

Go gluten free for one month and see if it makes a difference.  Food allergy testing is easy, but not accurate either.  They scratch up your arm and then dab them all with known allergens.  Cantelope came up as an allergy for me.  So did cinnamon.  But, I can eat both with no reaction whatsoever.  Proved nothing.  I was lactose intolerant though.  That test was nasty too.  They turned me into a pin cushion.  Had to drink a pile of lactose and then they would sample my blood over and over.  They ran out of veins.  I went in there thinking I would only have to breathe into a machine.  Then the doctor read the result backwards.  It didn't matter.  After I drank all that stuff, my GI system was in chaos, so I didn't need the test results.

 

I hate to tell you guys this, but narcolepsy gets worse as you age.  I really hope you do not have it.  It ruined my life, and my career.  I see patients in chemo with more energy than me.



#7 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 08 October 2013 - 08:31 AM

I just had my celiac tTG test done yesterday.  Doc didn't want to refer me to the lab for it, because it "would be a waste of time"...  Except it's not covered by insurance anyway; I'd be paying out of pocket...

 

Thankfully I'll be back to gluten-free in a day or two, and back to just the regular cloudy head and sleepiness, instead of cloudy-head sleepiness and lethargy and burning yellow diarrhea and sinus trouble and swollen guts. 



#8 Ferret

Ferret

    Member

  • Members
  • 945 posts
  • Gender:Female

Posted 08 October 2013 - 08:38 AM

I.H. how old are you? I can relate to the "ruined my career" but not to the "ruined my life" or the "gets worse as you age". I do think it progresses but then seemed to level out for me. I am now 62 and have never felt better...diagnosis was at 35 and life was hell until 39 then levelled out with research and self knowledge..."know thy limitations" and STICK to them.

 

Ironhands, unless you were kidding when you once wrote that you were having six pizza pops for dinner...your diet sucks. You can't eat crap and wonder why you feel lousy.



#9 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 08 October 2013 - 09:12 AM

Nope, that was a legit meal (though you forgot the 6 snack cakes for desert :P ).  I generally eat better than that, but I was prepping for the gluten tests.  My daily meal is generally massive, and on Friday or Saturday it's usually full of sugar to deal with the intense cravings.  Last night was just a massive plate of spaghetti, and over the weekend it was pasta and sammiches on rye bread and beer, the rest of this week is rice pasta, and chicken biryani.  This weekend will either be red bean and rice with pork, or tamales with salsa rice.  Probably whip up some hummus and tortillas for next week.  My diet's really not that bad most of the time, and I'm taking vitamin supplements as well in the morning to hopefully compensate for anything I'm missing. 

 

I have to do the one meal a day thing, because I get really tired after eating anything during the day, so when I do it, it has to be huge.  I'm hoping a stimulant will eliminate the issue, by limiting the appetite and allowing me to eat during the day.  At the very least, hopefully it'll allow me the time to prepare a lunch the night before and keep me awake after eating it at work



#10 Ferret

Ferret

    Member

  • Members
  • 945 posts
  • Gender:Female

Posted 08 October 2013 - 12:55 PM

Well that makes ME feel better ;) ...Joe Louis snack cakes weren't they? I didn't want to make you feel REALLY bad by mentioning them too. Got anything that resembles a vegetable in your diet? salad? broccoli? Watch out for the commercially prepared sauces and prepared meats too...loaded with chemicals, preservatives and salt. NO sugar...bad boy!

You might want to take your supplements with food. Also (since I just went through this with my hubby) are you taking any kind of stomach med? like Omeprazole or antacids? They definitely interfere with absorption of supplements...probably interfere with any kind of absorption of nutrients (real food included).



#11 ironhands

ironhands

    Member

  • Members
  • 356 posts
  • Gender:Male
  • Location:toronto
  • Interests:things and stuff, video games, not feeling like bum

Posted 08 October 2013 - 01:17 PM

Yup, all 6.  Usually put me right out after I eat them too; that's why I hold off my sugar cravings until Friday.  Straight up vegetables, not usually.  I have a hard time digesting some.  I usually toss in a can of corn when I do salsa rice.  Green or yellow beans during the week.  Potatoes, and tomatoes in sauce or chili are fine...  Any beans/chick peas are fine..  Broccoli, green peas, any deep green vegetable for the most part I can't get near or my stomach churns, even hidden in sauces or drowned in cheese; can't do it.  I stick to mainly starchy ones, or leafy ones like lettuce or cabbage.

 

I'm not on any medications at all, except some neo-citran yesterday for a cold I must have caught at the doctors office.  I take a centrum complete, a b12 supplement, and omega3 because I also can't get near any fish that isn't beer-battered cod, or tuna salad. 

If there's any malabsorption it's likely due to the issues I likely have with gluten.  Once I'm back to eating "normally" I should feel somewhat better, though I don't expect it'll change how tired I am :(



#12 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 08 October 2013 - 02:34 PM

I'm 43.  I guess it depends on the individual, and how they respond to meds.  I can't drive or work anymore -- it got that bad.  For someone my age, I'd say that's life ruining.



#13 Ferret

Ferret

    Member

  • Members
  • 945 posts
  • Gender:Female

Posted 08 October 2013 - 11:23 PM

I'm 43.  I guess it depends on the individual, and how they respond to meds.  I can't drive or work anymore -- it got that bad.  For someone my age, I'd say that's life ruining.

 I would have said exactly the same thing at age 38. The meds that were available at the time didn't work and stopping them put me in the worst emotional hole I've ever been in during my entire life. I can say for sure, since my early teens, that the first thing I thought about upon waking up was when I could go back to bed. It was all in my head, according to the Doctors. Well, yup, it certainly was all in my head until I started having full drop cataplexy at age 35...that gets their attention kinda quickly. Weak knee episodes started when I was around 32.

I believe that you have IBS as well? That's a double whammy. Are you having any luck controlling those symptoms? Find any triggers? Taking supplements?

What I'm saying is that your life is NOT over. Do NOT give up. You have work to do and it will take time and effort on your part...the smallest or most insignificant change could be a turning point. You have no where to go but up.

I have just wasted at least 10 years of my life by being scared to try another med. I knew about Modafinil when it first came out...'98? I am now four months and feeling GOOD on only 100 mg. a day. Did I change any of the other things that have helped me? NO. I still adhere to good nutrition and a strict sleep schedule.

And I smoke...did I think that the benefit outweighed the risks? yes. I really hope that the e-cig will give me a better delivery system...and science has proved that it helps.

http://www.ncbi.nlm....les/PMC3311418/

http://www.jneurosci...25/21/5225.full

http://www.sott.net/...Zombie-Antidote



#14 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 09 October 2013 - 12:49 AM

Thanks for the moral support Ferret.  I haven't given up, but the prognosis I was given isn't good.  They have agreed to measure my orexin level using a special radioactive test to see how bad it really is.  They MRI'd my brain (which was my idea) to make sure the cataplexy isn't being caused by any brain lesions or cancer.

 

I've tried everything -- Dexedrine IR, Dexedrine spans, Adderall, Ritalin, Biphentin, Modafinil.  They all work, except for one tiny little problem.  My heart.  The narcolepsy isn't the problem -- it's the cardiovascular reaction to the stimulants.  Tachycardia, chest pain, tension in my left arm.  Because of that, I have to take them in very low doses, and at those doses, they don't really work all that well.  Otherwise, this would be nothing.  Now I'm at the mercy of two insurance companies and unable to drive and work because of spontaneous cataplexy.  It just happens -- no trigger.  I can fight the EDS, but not the cataplexy.  So far, no med has been able to suppress the cataplexy.  Not effexor, not prozac, not cymbalta.  It's not a full drop attack yet, but I can see it heading in that direction.

 

I'm seeing a new doctor on Tuesday to try Xyrem for the cataplexy.  I even volunteered for them to test it on me in the sleep lab at various doses.  I agreed to pay out of pocket for the studies.  Xyrem has caused irreversible CSA in some patients, and the drug has a very high attrition rate.  They said it could screw me up even more than I already am.  I said, look, this lab is right next to emerg in case anything goes wrong.  I'm willing to take the risk.  I've been knocked out with a general, propofol, and never had a bad reaction to any downer.  They finally realized that if I was willing to do all that, that it must be real.  No kidding.  Three years ago I knew nothing about sleep.  Now I know so much I could be a sleep doctor myself.

 

Oh yeah, I tried nicotine too.  Tachycardic,dizzy, and started sweating like a pig, on just 1mg.  



#15 Potato

Potato

    Member

  • Members
  • 335 posts
  • Gender:Male
  • Location:Indiana, US
  • Interests:Chemistry, Medicine, Science, Computers, Traveling, Not Being Tired

Posted 09 October 2013 - 01:23 AM

I've tried everything -- Dexedrine IR, Dexedrine spans, Adderall, Ritalin, Biphentin, Modafinil.  They all work, except for one tiny little problem.  My heart.  The narcolepsy isn't the problem -- it's the cardiovascular reaction to the stimulants.  Tachycardia, chest pain, tension in my left arm.  Because of that, I have to take them in very low doses, and at those doses, they don't really work all that well.  Otherwise, this would be nothing.

 

What! Why didn't you ask, or why didn't they offer, to put you on a low dosage of a beta blocker? I had pre-existing heart palpitations before I ever even got diagnosed with narcolepsy, however beta blockers work wonders at slowing heart rate and reducing the other peripheral effects of stimulants. If it's nothing more than the cardiovascular side effects preventing you from using stimulants, a beta blocker should allow you to use them at the necessary dosages.



#16 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 09 October 2013 - 01:37 AM

I did.  I had atenolol from another doc.  Emerg gave me metoprolol, but they said it wasn't a good idea to combine the two -- that it could cause a spike in BP and a cardiac event -- that the tachycardia was the system's relief valve, and a warning to stop, or reduce the dose.  5mg of Adderall would put my pulse at 113 after the 2nd pulse kicked in after 4 hours.  Now I have to use Vyvanse powder in 10mg steps.  They said that the narcolepsy (being undiagnosed and untreated for so many years) led to autonomic nervous system dysfunction.  Somehow my brain receptors compensated in a strange way, or that my sleep is so disrupted subcortically that my CNS is always on red alert.  My doctor has seen this hypersensitivity with OSA patients -- that they can react badly to even 50mg of modafinil.



#17 Ferret

Ferret

    Member

  • Members
  • 945 posts
  • Gender:Female

Posted 09 October 2013 - 02:13 PM

My heart aches for you IdiopathicHypersomnia. I wish you every success in finding a solution that keeps both your heart and your mind happy and healthy. Please continue to fight the good fight...and do keep us informed. Your success will help others.



#18 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 09 October 2013 - 10:42 PM

Thanks again -- I'll keep you all posted.



#19 Potato

Potato

    Member

  • Members
  • 335 posts
  • Gender:Male
  • Location:Indiana, US
  • Interests:Chemistry, Medicine, Science, Computers, Traveling, Not Being Tired

Posted 10 October 2013 - 12:00 PM

You can't treat hypertension from stimulants with beta blockers, that is true. However if you were only having palpitations and tachycardia with an absence of hypertension then you can get away with something like 25mg metoprolol. I have autonomic issues too with a resting heart rate of 80 which increases to 100 while standing idle. And that's before stimulants. On Adderall my heart rate while standing idle can reach 120. But my blood pressure has never been in the hypertensive range. In fact it's often slightly lowered by adderall. When you have ANS dysfunction like that you can't predict how drugs are going to impact your cardiovascular health before trying them. You just have to give them a shot and monitor heart rate and blood pressure carefully until it's clear how it's working for you.

#20 IdiopathicHypersomniac

IdiopathicHypersomniac

    Member

  • Members
  • 424 posts

Posted 10 October 2013 - 07:23 PM

But anything over 100 is sinus tachycardia.  They were doing EKGs on me every 30 minutes.  They would not let me out of emergency until my heart rate went below 100.  If your resting heart rate is that high, your heart will get fried over time.  If you reduce the heart rate, the blood pressure will go up.  I'm off the stuff now and my heart rate is back to 60.  I'm done with it.  Black coffee and that's it.