SteffaneGrace

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

47 posts in this topic

Our daytime sleep follows cycles- just like at night. That's why in the MSLT, the naps are 2 hrs apart. Mid morning and mid afternoon are apparently the biggest dips.

Yes- everyone's Orexin B drops after eating and is highest when hungry. That way, we have energy to make dinner and rest after the meal. Even lions do this. Ans yes- this is the reason behind the siesta during the hottest and sleepiness time of the day.

I have always avoided much breakfast or lunch and pushed all my calories to late evening. When I learned this, it made sense out of my behavior.

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Livi- there are 2 types of Orexin A and B. A is what we lost. B is produced in the gut. Its level is highest when we are hungry and lowest after eating. By keeping my meals small during the day, I remain for awake- that really helps me. After a large daytime meal I am sunk.

I'm going blind reading medical articles and stir crazy trying to connect the dots in our incredibly complicated bodies. Hank, could you please post a link to the information that you provided to Livi? I've just read five articles and none of them detail it. It would save me a ton of time.

For the record, none of my meals are big...I just make sure that I have three of them...7 a.m., noon and 7 p.m. Not high carb and not high protein either. The biggest problem with an Atkins style diet is the "unlimited" protein that is suggested...the end product of protein metabolism is uric acid and that can really damage your kidneys.

What works for me may not work for others. Everybody has to make their own choices and LISTEN to their bodies.

In the meantime, I'll continue reading, learning and making adjustments along the way...it's a journey.

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I've been eating once a day since I moved out on my own 15 years ago, doctors are telling me it's the worst thing for me to do.  Eat once a day and then sleep, but I don't have the energy to make breakfast or pack a lunch.  Not really any restaurants close to work, and they're more than I'd like to spend on a meal.  I guess I could go with a cereal bar or something, but they're always high sugar or full of gluten.  Fruit makes me stomach hurt.  Beef jerky?

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http://edrv.endojournals.org/content/23/1/1.long

 

http://diabetes.diabetesjournals.org/content/50/1/105.full.pdf

figure 4 in this is interesting

 

http://www.nel.edu/26-2005_4_pdf/NEL260405A01_Baranowska.pdf

 

 

http://www.sleepdex.org/orexins.htm

this article is a good summary

 

Some of the information I have learned was through healthcare counseling. I met with a PhD knowledgeable in sleep disorders to help me manage and understand my symptoms - and how they impact my life and self image. I learned how to take a nap (could never do before intentionally) and how to allow Cataplexy to happen safely- rather than fighting it and getting hurt. The biggest help was validation that this is a medical diagnosis- not a character flaw. I struggled a lot with feelings of embarrassment and humiliation over my symptoms after hiding them for so long. I have now moved on to another expert in post traumatic stress and I am learning a lot. When I was being diagnosed and trying to decipher Cataplexy, I began to remember events when I had unexplained falls. I had forgotten those events as soon as they happened. Some were so terrifying that I just felt nothing. I was detached from the emotional content of events that I had just forgotten. My misdiagnosis, tests for brain tumor, aneurysm, suspected Parkinsons Disease- all did took an emotional toll as well.

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Ferret,

You're totally right about an Atkins diet being hard on the kidneys with all the protein.  I find that protein really helps me feel a little bit more of a perk, so I try to have protein every meal and throughout the day, but I also make sure that I drink lots of water so it won't harm my kidneys.  I read that we should have (0.4) x (body weight) =  grams of protein we need per day.  That's a good amount of protein (since I'm a bit overweight   ;)) and I don't think I ever go over that.

 

Also, if you eat fruits and vegetables (some carbs), then it's not the Atkins diet anymore, but more like the South Beach diet which means your body does not go into ketosis.  That's what hurts the kidneys.  South Beach is at least much healthier for the heart, since Atkins includes lots of fat for the body to use as energy in the complete absence of carbs.

 

 

Ironhands,  when I cook dinner, I make enough to have leftovers for lunch the next day.  When I don't cook dinner (bad, bad) then I go to the cafeteria at work for lunch the next day and get something low carb.  

Also, i know that if I don't keep a strict sleep/wake schedule and if I sleep too long at night, I will be wasted all day and would not have the energy to make breakfast, lunch, or dinner.   I wonder if that would help you as well?

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I make enough to last a few days of leftovers, if I took some for lunch I'd still end up eating a massive meal when I get home anyway.  I lay in bed from 8-12, then sleep, and wake up at 7:30, take 15 minute naps from 7:30 to 8, stand in the shower for 20 minutes while I wake up, then bike for 30 mins to work.

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I'm still really discouraged about how to take care of myself through what I eat, though.  

 

I get very shaky from low blood sugar if I don't eat every 3 hours.  So I either have low blood sugar from not eating, or I have a sleep attack from eating.

 

I'm having a sleep attack right now from eating a Thai chicken wrap, from the stupid wrap.  At least my shakiness is gone.  

 

Iron, you lay in bed from 8 p.m. until midnight and then you sleep until 7:30 a.m. and take naps until 8 a.m.?  Ok, the midnight to 8 a.m. is fine, but laying in bed for 4 hours prior to that is not good "sleep hygiene."  I get really tired too from 7 p.m. until I go to bed, so I am going to ask for stimulants at my next appointment.

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Have any of you considered exercise? It helps everything. It helps blood sugar. It can help you stay awake until bedtime. It can help you sleep better. It can help you lose weight. It. Can improve your mood. It can help you overall.

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I'm having a sleep attack from a sandwich from the coffee truck.  Decided I'd see how I would handle it.  Better off once a day :P

 

Yup, I lay in bed watching TV, not much else to do.  Sometimes I'll fall asleep earlier.

 

Hank - I bike about 5-6 miles a day (I think, we use the metric system), 30 mins each way, 6 days a week.

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You're absolutely right, Hank. It requires lots of self-discipline to get up early enough to exercise before work. If I wait until after work, I am too tired. I will try to start exercising again because it did help me sleep better, gave me more energy and improved my mood. Not sure about it helping the post-prandial hypoglycemia though. I used to exercise every day and have had that problem since college. But I will definitely make an effort to exercise again.

Iron, you said there's nothing to do except lay in bed after 8 pm. How about getting a hobby? I am trying to learn how to play the cello. i haven't been able to do it recently because of being too tired but hopefully exercising again and maybe a stimulant will help. If I am on my couch watching TV, I usually fall asleep there and stay there all night, with the lights on and TV on - not good.

Trying to titrate up to the "therapeutic dose" of a new mood stabilizer is also knocking me out each time I increase.

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It was really good to find this message board for support and ideas.   But I know at some point soon I will have to leave.   It's hard to explain, but when I got my repeat diagnosis last week and focused on that result and on hopelessness for recovery, my symptoms all of a sudden became very severe.  I had to stay home from work and sleep from last Wednesday through Sunday, and I left work early this Monday through Wednesday to sleep.  

 

Hank, you wrote in one of your posts that you like the book of Matthew in the Bible.  I am a Christian, and the only way I can explain what is going on with me is through Matthew 14:22-34 when Peter looks to Jesus and is able to walk on water.  But when Peter takes his eyes off Jesus and looks down at the water, he sinks.  

 

When I take my eyes away from my faith, and put my walls up against God for allowing me to have this disease, and I focus on logic and facts about narcolepsy, my symptoms become very severe.  When I prayed about it this morning and told God that I trust Him with my health, am looking to Him for help and not putting all my trust in science, the severity of my EDS immediately became less.  I can still fall asleep at the drop of a hat, but I could tell that something was different, something was lifted.

 

When I stay on these message boards and focus so much on my illness, I feel much worse physically.  So while it's great to chat with others who have this disease, I can't allow myself to make it my focus or identity.  

 

My point is that my faith is first on my list of "non-med tactics" I use to make it through my day.

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LOL.  I have several hobbies but I'm too tired to do them when I get home, I paint miniatures, make/play video games but the tiredness and accompanying physical depression keeps me from it.  I just watch tv/movies till i get really tired, shut it off and sleep.

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Livi...I believe that the bible also says that the Lord helps those that help themselves. Give yourself a shake and go back to doing what you were before the second confirmation.

Thanks for the links Hank, I'll get into them tonight.

Two days to go and I finish my third month on Provigil. Down to 160 pounds (that's a loss of 20 pounds in three months) and only 10 pounds away from my goal. I haven't changed the way I eat nor have I added special exercise to my day. I do plenty of running around as it is. My mood is permanently happy and life is just divine. Other than my assigned sleeps, I am not napping. Cataplexy also seems to be of lesser severity.

I'm very happy that it works for me. Hang in there! You'll find something that works for you too!

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I work in a research lab and I'm wondering if I can order purified gluten from a scientific company (very likely) and do an ELISA test on my own plasma to determine whether I have antibodies against gluten.

I am wondering why people don't get tested for antibodies against gluten at an allergist, even if it's not an all-out allergy.  Even a small number of antibodies against gluten could cause a response.

 

http://www.elisa-tek.com/diagnostic-testing-kits/food-allergens/

 

http://www.elisa-tek.com/wp-content/uploads/2013/05/AllergenTestingOrderForm130507.pdf

 

https://www.cyrexlabs.com/CyrexTestsArrays/tabid/136/Default.aspx

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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.

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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?

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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.

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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.

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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...

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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.narcolepsy.org.uk/news/why-do-some-people-with-narcolepsy-crave-sweet-foods

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