Fixed my night sleep issue but now have Narcolespy?

[xchocoholic]

Good point, heaps ... I have seizures (petite mals and myoclonus) and can relate to this too. (I'm a freakin mess !) My attacks involved an inablity to speak clearly too. All my words were slurred and I was pissed that I couldn't talk. I'm sure everyone thought I'd lost my mind .. and they were right ... lol .. This took about 60 minutes of complete rest and a meal to undo. I "think" this is different from narcolepsy.

I was told that this could be either a seizure or a tia. I've done this for years now but I started doing this everyday for awhile. And it was particularly bad when I overdid it. This was right before I had my first and only two hour seizure that landed me in the ER. I was eating those GF foods which I KNEW caused me to have myoclonus and I was drinking a tiny bit of coffee and eating some chocolate every day. I was just trying to have a good time .. I actually haven't done this since eliminating caffeine and stopping those gf foods ... kow ... kow .. kow ... lol ...

I was in the process of having these episodes evaluated but we had to call it off. Part of the evaluation process was to look at my lung and heart capacities and those tests included drugs. My doctor said he couldn't do it because of my seizure.

tc ... x

 

[taniaaust1]

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

lol .. I hope you arent paying for it now thou.

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 ...

Do u know if Dopamine is made from 5htp? My father has schizophrenia (hence must be low on dopamine I suppose).. my symptoms at times have been very parkisons disease like to the point that at a hospital I once got mistake for a parkisons patient (i think parkisons is lack of dopamine too?). It is possible i could be low in that (doesnt it compete for the same receptors as serotinon? or have I got that wrong?)

Since you know it's from overdoing tho, I'm not sure what to tell you.

to explain it better.. actually happening when Ive "just" stayed within my limits (like day after shopping.. when im doing things to my full capcity day before but JUST staying under my limit). So not doing enough to ME crash (what all of us would consider a typical crash) the next day but just causing this symptom.

Other than my body simply can't unwind enough for me to fall asleep at night if I've overdone it too.

Overdoing it can affect me two different ways.. often has a hypersomnia affect on me so knocks me out but at other times it goes the other way and has an insomina affect esp if its caused "wired but tired". (I never know which end of the spectum I'll swing with my symptoms when I over do it).

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 do get quite bad hyperinsulinemia symptoms (and have been offically diagnosed with that too with tests) and yeah I agree that makes one feel very tired, worn out and groggy when that hits but these sleep attacks are far worst then that. The hyperinsulinemia when it hits me.. makes me feel like I havent slept in 24 hrs.. this is worst.. when it hits it feels like I havent sleep in 4-5 days... and instant severe need to sleep, I have no choice but to do so... thou can get very tired, I still have a choice with a hypoglycemia or a hyperinsulinemia attack.

 

[taniaaust1]

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

I too had thought narcolepsy was all about just suddenly falling asleep till I started researching it and have then been surprised to see it actually possible fits my experiences.
[/quote] Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later. [/quote]

During one of these attacks.. I do got to sleep and into REM (im dreaming) very very fast..sometimes like 1 min. (going to sleep like that only happens during one of those attacks... I still have that goddarn insomnia).

Another one of the many problems that some narcoleptics experience is cataplexy, a sudden muscular weakness brought on by strong emotions (though many people experience cataplexy without having an emotional trigger).[2] It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse

Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal.

Do you suddenly find youself nodding off alex? What I didnt know before I started researching this disorder is that one can still be conscious some during the attacks. http://en.wikipedia.org/wiki/Narcolepsy

The main characteristic of narcolepsy is Excessive Daytime Sleepiness (EDS), even after adequate night time sleep. A person with narcolepsy is likely to become drowsy or fall asleep or just be very tired throughout the day, often at inappropriate times and places. Daytime naps may occur with little warning and may be physically irresistible. These naps can occur several times a day. They are typically refreshing, but only for a few hours

yeah alex.. I feel much better with a quick nap during one of the attacks.

I can fight this if I want to though its really hard.

One can fight these attacks.. but its very hard. I usually only fight it for 5 mins as its tooo hard hence went to ask someone I was trying to visit, where I could go and sleep.. its too unpleasant to fight it for long.

I appear to have corrected my circadian issues using Thorne Research B Complex 12.

That's great to hear and is something I could try .. maybe it would get me off of the melatonin Im currently taking.

 

[taniaaust1]

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.

I used to be like that too when I was severe ME.. I think for me thou those sudden sleep attacks but then was just cause was so so exhausted .. I also didnt wake up refreshed from them back then either.. I was constantly severely exhausted to the point I'd suddenly fall into a comatose state (I was so bad I once slept for 3 days/nights straight without waking).

Whatever is going on now.. is completely different to that. maybe narcolepsy could be something which many of us develop, after all it is a neuro issue and ME is a neuro issue so maybe ME can damage us so we start getting this?

 

[taniaaust1]

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

who knows.. its happens fast enough that it could be something like a seizure of some kind.

I was rereading the wiki stuff on this disorder today and saw something there I'd missed seeing before or just didnt comprehend it before.

The classic symptoms of the disorder, often referred to as the "tetrad of narcolepsy," are cataplexy, sleep paralysis, hypnagogic hallucinations, and excessive daytime sleepiness.[7] Other symptoms include automatic behaviors.[8][9] These symptoms may not occur in all patients. Cataplexy is an episodic condition featuring loss of muscle function, ranging from slight weakness (such as limpness at the neck or knees, sagging facial muscles, or inability to speak clearly) to complete body collapse. Episodes may be triggered by sudden emotional reactions such as laughter, anger, surprise, or fear, and may last from a few seconds to several minutes. The person remains conscious throughout the episode. In some cases, cataplexy may resemble epileptic seizures

Some of my seizure like incidents.. may of been caused by cataplexy? Some of those incidents when I collapse into a seiziure like episode, Im like fully conscious... while others Ive lost all consciousness of my body and only had awareness left of an flapping arm. It says there one can remain conscious during cataplexy.

My specialist has in the past sent me to heart clinic and EEGs on my brain for all that but with the reason not being found. He ended up concluding that maybe I have epilepsy which just hasnt showed up on an EEG yet (and told me I need a scan when undergoing an attack..which is impossible for me to do).

The more I read on this whole narcolepsy disorder the more Im wondering if its causing some of my symptoms.

A rare subset of narcoleptics also experience heightened senses of taste and smell supertaster, phenomenon

I also get that.. me and my boyfriend are always making jokes that I should go and get a job as a "taster". I notice milk starting to turn sometimes 3 days before the used by date to the point I often find it undrinkable.. yuck (others thou when I get to taste the milk cant taste that).. and other stuff others cant taste.

 

[taniaaust1]

Good point, heaps ... I have seizures (petite mals and myoclonus) and can relate to this too. (I'm a freakin mess !) My attacks involved an inablity to speak clearly too. All my words were slurred and I was pissed that I couldn't talk. I'm sure everyone thought I'd lost my mind .. and they were right ... lol .. This took about 60 minutes of complete rest and a meal to undo. I "think" this is different from narcolepsy.

I was told that this could be either a seizure or a tia. I've done this for years now but I started doing this everyday for awhile. And it was particularly bad when I overdid it. This was right before I had my first and only two hour seizure that landed me in the ER.

Your ME stuff there is very like mine.. I too have a myoclonus diagnoses and in the past used to get those attacks where I couldnt talk at all, it would slurr and then my mouth would just make noise..couldnt do words at all.... all if I over exerted.

Longest actual seizure incident Ive had is about 5-15 mins (im not sure as Im not time aware when they happen.. I had one where people called an ambulance when I collapsed due to one in the city.. I came fully back to consciousness just when the ambulance people arrrived so i figure I must of been out for about that time. I got an "aura" where my world all went like warpy right before that attack. So it appears that one was an actual seizure.. that one was brought on by stress and exertional (being made to do more then I should of been doing).

the one I had recently.. seemed a bit different to those others. Its hard to explain how.. no" aura"... my head wasnt in same state but somehow different... and I lost my body but still had arm awareness (this was a bad one but I didnt froth at my mouth like one in the past). I may be wrong and they be related to same thing but then maybe not. The last one happened when I hadnt over exerted and had just got out of bed.. then suddenly no legs... and lost of most awareness but of my arm widely flapping so I assume my whole body must of been.

Anyway.. doctors cant figure out what is going on with me.

 

[alex3619]

During one of these attacks.. I do got to sleep and into REM (im dreaming) very very fast..sometimes like 1 min. (going to sleep like that only happens during one of those attacks... I still have that goddarn insomnia).

Do you suddenly find youself nodding off alex? What I didnt know before I started researching this disorder is that one can still be conscious some during the attacks.

One can fight these attacks.. but its very hard. I usually only fight it for 5 mins as its tooo hard hence went to ask someone I was trying to visit, where I could go and sleep.. its too unpleasant to fight it for long.

That's great to hear and is something I could try .. maybe it would get me off of the melatonin Im currently taking.

Hi Tania, I fall asleep super fast during one of these attacks if I lie down. I am not sure about the dreaming - maybe. I will keep a watch on this and see. I do know I get a lot of dreaming in even if I am only napping for an hour and a half - so as I said, maybe.

I do nod off when I get like this, its like I am passing out and all of a sudden I will jump and wake up a bit. If I persist in fighting it the problem will go away after some tens of minutes, only to return a half or or an hour later. At some point I just stop fighting it and have a nap.

This problem was not very manifest when I had my circadian dysruption. Its become very prominent since I corrected the circadian issue. I think it very likely they are connected.

Going back to blood sugar, I notice that these attacks are worse if I have not been eating much or have skipped several meals. So snack and nap has become my strategy of late.

Bye, Alex

PS Just looked up Hypnapogia on Wikipedia:
http://en.wikipedia.org/wiki/Hypnagogia

I have noted before that people with ME often develop impaired episodic memory but the semantic memory is not quite as impaired. The wikipedia had this to say in relation to hypnagogia:

"A feature that hypnagogia shares with other stages of sleep is amnesia. But this is a selective forgetfulness, affecting the hippocampal memory system, which is responsible for episodic or autobiographical memory, rather than the neocortical memory system, responsible for semantic memory.[9] It has been suggested that hypnagogia and REM sleep help in the consolidation of semantic memory,[45] but the evidence for this has been disputed.[46] For example, suppression of REM sleep due to antidepressants and lesions to the brainstem has not been found to produce detrimental effects on cognition."

Of course to have relevance to ME it means we are walking around in a state of hypnagogia. So what is hypnagogia: the state between waking and sleeping. This sounds similar to brain fog.This is all highly speculative of course, its easy to overinterpret this kind of stuff.

 

[xchocoholic]

Hi tan,

We certainly do have a lot in common. One difference is our abilty to be function tho. My OI keeps me feeling like poo. Once I'm upright, my body begins to freak out ... If I'm here I'm supine. I haven't found anything that helps yet.

According to wiki, dopamine comes from tyrosine which comes from dlpa which comes from certain foods.

http://www.umm.edu/altmed/articles/tyrosine-000329.htm

Tyrosine is found in soy products, chicken, turkey, fish, peanuts, almonds, avocados, bananas, milk, cheese, yogurt, cottage cheese, lima beans, pumpkin seeds, and sesame seeds.

I would take this with a grain of salt though. Gluten has been implicated in both these illnesses too. I'm more likely to believe gluten is at the source of this ... tc ... x

 

[taniaaust1]

Hi tan,

We certainly do have a lot in common. One difference is our abilty to be function tho. My OI keeps me feeling like poo. Once I'm upright, my body begins to freak out ... If I'm here I'm supine. I haven't found anything that helps yet.

My OI used to be extremely severe to the point where I couldnt stand for 30-50 seconds in a queue or less (I had to constantly be moving about while in the queue. I used to go completely unconscious for up to 5mins at a time from standing.

Fortunately over the years it has been improving to the point where it is now and no where like it used to be (that was even before I started the meds).

It was so bad that I passed out a few times just from being flat.. when I was at my worst I was sleeping with legs of bed raised and hanging my head over the bed so I didnt faint (extremely bad POTS can start to affect someone laying too). There used to be times I couldnt at all even sit with it.

Hopefully yours too will improve with time.

 

[xchocoholic]

Thanks. I'm a little whiney from it at this point so I can use the encouraging words. Tc .. X

 

[Chuck0]

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).

Just a note. It looks like you made a big jump from pregnenolone to prednisone !
Pregnenolone is a mother hormone to over 200 sub hormones.
Pregnenolone is generated in the body from vit D.
It does help some people sleep. Use sparingly and creep up on it. Your body can choose which direction to shuttle the mfg of down steam hormones : it can go to the DHEA side or it can go to the progesterone/cortisol side.
So if you are in depletion and your body is looking for increases in cortisol you might end up with increases in inflammation !
On the other hand it might pick up your DHEA side and you might feel a pick up in energy.

My point is pregnenolone is not prednisone !
Just read up on it.