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Fixed my night sleep issue but now have Narcolespy?

Discussion in 'Sleep' started by taniaaust1, May 14, 2012.

  1. taniaaust1

    taniaaust1

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    My night sleep time is getting better and better .. (Im getting to sleep about 11.30-12.30 with 3mg melatonin). This morning I actually almost woke up with sun (6.50am), feeling refreshed...but suddenly fell asleep 50 mins later. Woke up after a bit feeling okay again.. then suddenly fell asleep again (this happened 3 times in a matter of a couple of hours)

    What is sucking now ... is since my insomina is now really good and under control... Ive now been having a heap of "sleep attacks" which are obviously some kind of sleep (brain?) issue rather then being caused by me feeling tired. They come on extremely suddenly.. eg feeling great one moment but have irrestible need to go to sleep due to "sleepy tiredness" the next (not physical tiredness, no exhaustion).

    So this morning I started researching "sleep attacks" and from what Im reading it appears ive now developed Narcolepsy (Narcoleepsy is classified as a neuro issue).
    quotes below from wikipedia

    When one of these sleep attacks take place.. I do slurr my speech, my vision does blur... and I tend to dangle my head due to needing to sleep so like start to nod off.. basically I start to fall asleep while doing whatever Im doing. (this thing is also a post exertional symptom for me eg happens day after shopping...but one which I get without any exhaustion)

    umm interesting that a "virus" part

    sighs.. I do have circadian rythm issues and hence why I need meds for sleep (melatonin and at times other meds too). All this time trying to get my sleep hours normal and I finally manage to do it and now this (feeling frustrated about it.. I DO NOT want to have to sleep during the day).

    Usually when I have a sleep attack .. if I give in to the attack.. I do then usually wake up completely refreshed after a short time but then can be hit with another one.. a bit later.


    The waking dreams I have= hypnagogic hallucinations

    thou I do remember it.. I have been getting noticable automatic behaviour. I posted recently on a medication thread about recent issue I had when taking my drops.. went into automatic behaviour (not a completely aware state) and keep on dropping my seleium drops onto my tongue .. I came too and realised I'd put 10 in my mouth instead of 6 due to this autopiloit state Ive sudden.y gone into (I'd keep counting and counting during that incident as it was all part of the autopiliot..fortunately i did come too as otherwise i may of taken the whole bottle).

    :( Thou I seemed to possibly have had narcolepsy at times in the past with the ME.. I put the sudden falling asleep down to due to just sheer ME exhaustion..cause i was like beyond tired and always like that

    To have this now suddenly coming in again (I havent had sudden falling asleep issues for years), when the ME exhaustion and tiredness hardly exists for me no more.. Well it truely sucks. It sucks that I develop problems faster then I can solve them. Looks like this will be yet another thing I need to take to my specialist to try to sort out (probably wont get time thou as next appontment we need to sort out my latest abnormal blood tests and any new test results).

    How do people keep up with this illness? Im seeing my specialist once a fortnight and it isnt enough, we cant keep up.
     
  2. SickOfSickness

    SickOfSickness Senior Member

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    There is a good list here. http://www.livestrong.com/article/115717-bad-side-effects-melatonin-supplements/

    I used to take it sometimes. A few months ago I read something and decided not to take it anymore. I can't remember why but it was a good enough reason to scare me.

    Here is one plus to it. "Finally, it is believed that the immune system can be strengthened by melatonin. This is because melatonin is recognised as a strong antioxidant, which is a substance that protects your cells from the effects of free radicals."
     
  3. taniaaust1

    taniaaust1

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    Thanks.. Narcolepsy isnt listed on that list of side effects.

    I do have a lot of things on that list of things which Melatonin can cause..but I had all those issues already going on including those hormonal issues issues BEFORE I started taking it... except "changes in sleep".
    I suspected the dose increase I did at start of the year, may of been the cause of about one night per month of waking dreams.

    I rarely tell about this as I dont want to encourage anyone to do this..but once when I was suicidal.. took a FULL bottle of melatonin in the one go.. interestingly.. that didnt give me any bad side effects at all and irronically ended up feeling better then ages after I did that (weeks/months better) and truely believe it was due to the melatonin I'd taken .
    Id say probably due to its antioxident affect.. it seemed to help something in my system.. vitamin C and B12 helps me too.
     
  4. August59

    August59 Daughters High School Graduation

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    It could be your cortisol has to get back in rhythm. Narcolepsy is very spontaneous. I've been Walmart shopping and fall asleep standing straight up and sleep for 15 mins. I have slept almost all night before and get up and in an hour go back to sleep for 8 more hours. I have also took 30mg adderall and slept for 3 hours. I'm lucky in one respect is that I don't have cataplexy. But for the most part my nightime sleep is messed up. I can b dog ass tired take an Ambien and sleep 3 hours and be up the rest of the night. I do better when my cortisol is closer to where it should be. If I get in a lot of stress it goes all to hell from flat line low to low 2 hours of the day to high the other 22 hours. It all goes back to the pituatary or hippocamopus (can't remember) but it is considered an autoimmune disease now do to the body destroying hypocretin (or sometimes you will hear Orexin). They are trialing a nasal spray on animals which puts it 7 - 9 years away. Xyrem helps, but it is expensive. Xyrem is not made in the US anymore and I think they moved to Ireland.
     
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  5. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello glad you are sleeping better at night but sorry your being so sleepy in day time...i have insomnia also and its hard..because i will be very tired all day and nod off and on but cant get any good sleep...or deep sleep..

    so i really dont have any advice but i just wanted to say hello and i hope that you get some good answers to help you...i know theres a big difference in being sleepy and nodding off and falling asleep like you described all day..
    because that could get scary if you were out by yourself and sit down somewhere or something and fell asleep...maybe always try to be with someone if you can or put alarm on your watch or cell phone every so often to keep you awake if your out..

    take care
     
  6. SickOfSickness

    SickOfSickness Senior Member

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    It says this, yours is more severe, maybe different. "
    According to the Mayo Clinic, melatonin supplements may cause daytime drowsiness. This side effect can be corrected by taking a lower dose
    "​
     
  7. Valentijn

    Valentijn Activity Level: 3

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    It might be due to hypotension and drowsiness, not narcolepsy. Melatonin itself can cause that ... and it might not be manifesting as an aggravation of your usual POTS, but as a different symptom.

    I've noticed a similar effect when taking 5HTP (a serotonin and melatonin precursor) ... I get light-headed more, but it feels different than my usual NMH.
     
  8. taniaaust1

    taniaaust1

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    My cortisol is screwed up (low on the 24 hr urine testing and it dont really react to stress or pain). So thanks.. maybe that could be affecting things.

    Im about to try to get in with a new specialist.. (one who deals with people with strange illnesses and hormonal issues.. he's been on holiday but comes back tomorrow.. fingers crossed I'll be able to book an appointment).
     
  9. taniaaust1

    taniaaust1

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  10. taniaaust1

    taniaaust1

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    Hi :) .. thanks for the hello.

    What's confusing me is I arent tired all day.. most of the time Im not at all tired eg today I only had a 2 hr period in which this was occurring and other then that period.. no tiredness at all.

    When it happens.. I'm often tired for only about 5 mins(sometimes less) and then Im asleep, then wake up usually feeling completely fine again, after 15 to 90mins. (some days I dont have this happen at all.. but day after shopping it usually happens at least once.. it can be as little as 20mins (tiredness and sleep).

    Hence why Im thinking its not being caused by being tired at all, but rather a sleep disorder/neurological thing..somehing must suddenly be happening with my brain waves or something.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Tania, look into pregnenolone to improve cortisol levels. I think u mentioned before that in the past prednisone helped u alot, worth looking into, biovea sell it too.

    cheers!!!
     
  12. taniaaust1

    taniaaust1

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    I agree POTS can cause a ton of symptoms but Im usually quite aware when POTS is giving me symptoms. My POTS tiredness feels different to my ME tiredness.. I also are aware when I get headaches, nausea, dizziness from the POTS.

    These sleep attack things.. arent an orthostatic issue and happen just as much when Im laying to when Im sitting or standing, they can happen first thing in the morning before Ive even got out of bed.

    I would certainly be considering POTS if they related to the orthostatic or happening just after I'd been standing (all my POTS symptoms have always been orthostatically triggered). Thou seemily post exertional some, they usually happen when Im not at all tired before hand..so not drowsy. (I often dont get any tiredness post excertionally but rather other ME symptoms usually neuro ones eg loose all coordination so cant walk or other more like MS symptoms).

    They happen both when Im in a hypertensive state when standing but can also happen when Im experiencing a hypotensive state when laying. (so obviously arent related to my BP). I arent usually dizzy at all with these sleep attacks can go very dazed when experiencing one (but the dazed seems to be different to my POTS dazed).

    Ive been on my current melatonin dose for months (and this issue is fairly new) but all together have been on melatonin for quite a while.
     
  13. taniaaust1

    taniaaust1

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    thanks everyone for your posts

    Hi heaps..

    It wasnt me who said that prednisone helped my cortisol. I was taking low dose hydrocortisone in the past for my cortisol issue which didnt help my symptoms in any way at all.

    Is that a prescription drug?

    are you aware the wikipedia says following about that drug
    "Adrenal suppression will begin to occur if prednisone is taken for longer than seven days. Eventually, this may cause the body to temporarily lose the ability to manufacture natural corticosteroids (especially cortisol), which results in dependence on prednisone"

    It also apparently increases risk of diabetes .. Im already a high risk (prediabetes) and one of the reasons why my specialists have me on that very strict diet for my insulin and also to try to prevent diabetes (which two different doctors have told me I will end up with).
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    prednisone is a prescription drug, mainly used for severe inflammation
     
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  15. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    I didn't read this whole thread so sorry if this was mentioned. I was wondering if you need 5htp too.
    What if your body can't make serotonin or whatever else 5htp breaks down to and we just don't know it yet, and your melatonin is looking
    for it. In other words you can't stay awake during the day because melatonin has started your sleep cycle but
    your body can't complete it.

    Did that make any sense at all ? We know that certain nutrients require other nutrients to complete a biochemical
    task. And your starting the sleep task but without serotonin, your body can't stop trying to sleep now that it has melatonin on board.

    I know that I can't get deep sleep without 5htp. The difference is that I wake up energized and feel like a bomb could've gone off and I wouldn't have heard it ... lol ...

    I can't remember what just taking melatonin did to me because it was years ago that I tried taking melatonin alone but I know it
    didn't work. 5 htp is the only thing I've tried that gives me the DEEP sleep my body needs.

    I take theanine too
    because I have a glutamate receptor Problem and it calms this.

    tc ... x

    PS. I had narcolepsy from 1990 - 2005 and it was from eating wheat. It went away within 7 - 10 days of eliminating it from my diet. I've only had it once or twice from getting heavily cross contaminated with gluten since then.
     
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  16. taniaaust1

    taniaaust1

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    Wouldnt I be feeling depressed a lot and not happy most of the time if I was low in serotonin to the point it was affecting my body/mind?

    the sleep attacks only usually happen if Ive done more then usual the day before..so dont seem to be due to my sleep but are certainly related to previously activity levels, so hence I havent thought they are due to my sleep.

    I also are sleeping very well.. I seem to be currently sleeping deeply once Ive got to sleep.
    (I wont count last night.. last night was bad and not a typical night for me as I had issues with adrenaline rushes... my body produces very high levels of adrenaline on urine tests but I only get a bad feeling adrenaline rush to the point it bothers me about once every week or two).

    melatonin only will help some if ones levels are low.

    Thanks for sharing but it cant be that, Im on such a low carb diet that I dont eat wheat. (the sleep attacks in my case are also clearly triggered from activity levels day before)..
     
  17. xchocoholic

    xchocoholic Senior Member

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    Dopamine helps our moods too. I'm a naturally happy person too but 5htp is what my body needs. For now anyways. It may change over time but at my age, 56, I doubt it ...

    We're still learning what chemicals our bodies use and we know that we can't track or replicate all these in a lab. We see this time and time again when a supplement manufacturers markets a newer and better product. That's just the ones that can be replicated too.

    There are also enzymes, peptides and aminos that interact to cause these chemical reactions and are the result of these chemical reactions but this info is conveniently left out when they're discussing how their supplements interact. It would be bad for sales if they told us this.
    :devil: Which I why I try to stick with raw whole foods that have these.


    We're not going to react the same way to the same foods. There is a long list of possible reactions to gluten because of this. I get myoclonus and insomnia from gluten and I personally don't know anyone else who does. I have a friend who gets RA symptoms. Another who gets grouchy after he's eaten too much for an extended period of time. ETC ETC ETC ..

    This goes for other foods too. I have a freind who sneezes non stop from dairy and I get dark marks around my eyes from dairy. I get phlegm in my throat from soy .. I seem to react to most of the common food intolerances.

    Since you know it's from overdoing tho, I'm not sure what to tell you. Other than my body simply can't unwind enough for me to fall asleep at night if I've overdone it too. I definitely use supplements that night for sleep. I never get narcolepsy during the day tho ...

    I just thought of another reason but as far as I can remember, it doesn't feel like narcolepsy did to me. I'm off all sugars but If I eat too much fruit, my body overproduces insulin (hyperinsulinemia) and the blood glucose spike or fall makes me sleepy. I feel more groggy with this than I remember feeling when I had narcolepsy.

    I still think the melatonin alone could do this tho ...

    tc ... x

    PS .. Sorry this is so long worded. I'd just woke up and was feeling energized ... lol ..
     
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  18. alex3619

    alex3619 Senior Member

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    Hi Tania, I appear to have corrected my circadian issues using Thorne Research B Complex 12. Now I get what you would call sleep attacks two or three times a day. I do not think its narcolepsy - I could be wrong, I have never really researched narcolepsy, but in narcoleptic attacks you fall asleep without volition I think. I can fight this if I want to though its really hard. The good news though is that after I nap from one of these I feel better for a while. Is that the same with you Tania?

    Bye, Alex
     
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  19. lansbergen

    lansbergen Senior Member

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    When I was severe ill I had what I think was narcolepsy. No warning at all. In a split second i went from being awake to what I called a coma. It was not refreshing sleep. Duriing recovery it disapeared.

    Now I sometimes have sleepyiness attacks. If I fight it I will be punished. If I do not resist I fall asleep. That sleep is refershing.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Could also be some type of seizure. Sometimes these things need further investigation but easier said then done with me/cfs
     
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