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What Non-Med Tactics Do You Use To Make It Through The Day?

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#41 Livi

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Posted 29 August 2013 - 02:29 PM

Ferret, oh, I didn't say I wasn't going to do the things on my list that help me!   Of course I am going to manage my symptoms!  I'm just not going to focus on it as an illness, or as part of my identity, with an attitude of self-pity or hopelessness.  

 

The Bible doesn't say that, by the way.  :)   But that doesn't mean it's not applicable to our lives.



#42 ironhands

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Posted 29 August 2013 - 02:39 PM

Well, Iron, you'll get treatment soon, hopefully, right?   

Hopefully.  I need something to give me more energy in the morning, that won't stay in my system more than 8 hours like caffeine seems to, and something to really control the intense hunger I get.  Another 6-8 weeks till I get something.... I've managed decades on my own, I can last a few more weeks.

 

There are a bunch of gluten antibody tests out there from what I understand, but I'm not sure of the process, never bothered looking into it.  Wouldn't it be much easier to just go through a doctor?



#43 Livi

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Posted 29 August 2013 - 02:43 PM

I don't know.   I have an allergist who won't test me for food allergens, go figure.   



#44 Megssosleepy

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Posted 13 September 2013 - 03:19 PM

Hopefully.  I need something to give me more energy in the morning, that won't stay in my system more than 8 hours like caffeine seems to, and something to really control the intense hunger I get.  Another 6-8 weeks till I get something.... I've managed decades on my own, I can last a few more weeks.

 

There are a bunch of gluten antibody tests out there from what I understand, but I'm not sure of the process, never bothered looking into it.  Wouldn't it be much easier to just go through a doctor?

Do you think the intense hunger you get is from not eating all day?  Not trying to sound like an ass.

 

You said you cant do fruit or gluten, have you tried snacking on nuts, veggies, chips, cheese stick, hard boiled egg?  All are quick and easy.



#45 ironhands

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Posted 13 September 2013 - 03:28 PM

Do you think the intense hunger you get is from not eating all day?  Not trying to sound like an ass.

 

You said you cant do fruit or gluten, have you tried snacking on nuts, veggies, chips, cheese stick, hard boiled egg?  All are quick and easy.

It's a valid question, my GP said the same thing when I told her about the intense appetite and suspected low blood sugar.  The intense hunger attacks have been hitting me since I was like 8, and eating 3 meals a day - in fact they'd often happen right after lunch.  I used to bring a lunch to work, or grab something from the snack truck, but I'd end up a) getting really tired and B) I'd still end up just as hungry at the end of the day.

 

I had always thought it was hypoglycemia, but my blood sugar tests normal, it was a little on the low side when I was actively testing it, but not enough to cause any issues, and since I've cut out soda, fruit juice, sugary snacks, my blood sugar is completely normal.  I've seen posts stating there's a connection between orexin and the symptoms of hypoglycemia, so that must be what it was/is.



#46 sk8aplexy

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Posted 13 September 2013 - 04:27 PM

That last sentence there, ironhands, is interesting.

I was born with 'severe hyperinsulinemia hypoglycemia' and was having intense seizures from 2 months old till around 4 months old.  It took my parents rushing me up to Mayo Clinic in Rochester, MN (a 16 hour drive then and now a 10 hour drive), to have it figured out; doctors around here just said "your son is perfectly normal besides the epileptic seizures..."

There was an overgrowth of the islets on the Pancreas, causing way too much growth of insulin, so a 'pancreatectomy' (90-95% + of pancreas removed) was done, around 4 months old (I have a massive belly scar).

For 5 years after, my parents checked my blood sugar levels daily, and I took the opposite of insulin, in 'Diazoxine' (med) form.

┬┐Could Narcolepsy relate directly [┬┐somehow?] to the pancreas and the islets; be it endocrine system?

 

No one, besides my parents in hindsight now (as of the last couple years, with understanding of Cataplexy, which I discovered the name of at 28 searching 'laughter AND paralysis), noted that when I was tickled as an infant, I would stop reacting and just stare off blankly.  Very much, from my childhood, I can recall whenever I was tickled (intensely) in the belly, my arms would not respond and were limp; I mentioned it often, but it was never considered something unusual.  It was around 20 when I began actually collapsing, from Cataplexy.  That's all just to say, I've had Narcolepsy with Cataplexy since infancy...

 

And, I can definitely relate to wanting to binge eat, late evening and/or night, regardless of how much I've eaten earlier in the day...



#47 ironhands

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Posted 13 September 2013 - 05:29 PM

I actually just had/am having an attack right now, and I ate earlier in the day.

 

For me, classifying/diagnosing my problems went: ignoring them, depression, hypoglycemia, depression, ignoring them, gluten, ignoring them, sleep apnea, N.  N is the only somewhat official diagnosis I have received so far (latest doc ruled out depression, except as a symptom).  None of my symptoms are anywhere as severe as most on here.  After I finish with the next PSG/MSLT I'm going for allergy and gluten tests, and possibly any other autoimmune related issues.

 

Binge eating?  Not me :P  Tonite's a can of ravioli, 4 pizza pops, 6 Joe Louis, followed by tortillas and hummus.  Normally I wouldn't have the sugar, but intense craving right now.

 

Glucose info I'm going by: http://www.narcoleps...ave-sweet-foods







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