Jump to content


Photo

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

work non-medical homeopathic natural organic

  • Please log in to reply
46 replies to this topic

#21 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 28 August 2013 - 03:26 PM

Hank, actually now i remember that i had found that site on my own through Google. i read some of it, and then dismissed it. It just didn't seem legit to me. so don't worry too much about us newbies, we have good heads on our shoulders, even sleepy ones. :)

#22 sk8aplexy

sk8aplexy

    Member

  • Members
  • 331 posts
  • Gender:Male
  • Location:IN
  • Interests:Balance & Proportion of Tacos. Care & Respecting. Pools & Concrete Skateboarding. Observing & Contemplating. Future & Traveling. Technology & Evolving. Philosophy & Words...

Posted 28 August 2013 - 03:32 PM

My perspective is along the lines of this quote (even though I do not much respect the person I'm quoting):

"There are known knowns; there are things we know that we know.
There are known unknowns; that is to say, there are things that we now know we don't know.
But there are also unknown unknowns – there are things we do not know we don't know."

(I'll add:)

There are many known knowns but all of which are within bigger unknown unknowns.

Losing sight of such, creates distortions and false beliefs.

We can only 'know' so much and need to remember there will always be less known than unknown, regardless.

 

When people assert so called knowns, as if there is no doubt or possibility apart from that which they speak; I find it disconcerting.

Research can be severely flawed, in a similar manner. 

Words are only words, no (?). 

Drugs are only drugs, but then you add legal and/or illegal. . ?

Food is only food, but then you add the modified organisms, plastics and/or metals. . ?

I always admit, very upfront like, that I may actually know nothing; doing so helps me feel more grounded and safe from attack, as I am always also, open to agreeing to disagree.

 

As for the gluten-free thing.  I think that it can take a long while, of having them out of your system entirely, for the effects to actually appear and/or occur.

If it is stored in your fat, I'd think it may take 30 days of having none in your system to flush, or even perhaps 3 months and a more thorough cleansing (as in eliminating other sorts of fats to help clear out the glue, so to speak). 



#23 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 28 August 2013 - 03:58 PM

Well, regardless, I just don't think I can do the gluten-free thing, because I don't have the desire to. When I was doing everything on my list, I was managing pretty well until 7 pm every day. I like food too much and would feel too deprived if I went gluten free, and I couldn't stick with it if there was no definitive scientific proof about its usefulness for narcoleptics.

#24 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 28 August 2013 - 04:34 PM

I try to keep low carb during the day. I indulge in carbs late evening. I do not drink beer and keep processed foods to a minimum. We have 3 children so I eat what my family eats. It is just not practical for me to adhere to a strict diet. In addition, I exercise a lot and lose weight easily, so I cannot afford to be picky.

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.

#25 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 28 August 2013 - 05:15 PM

Wow, thanks Hank, I had no idea about Orexin B. that must explain why I felt knocked out after eating a plain chicken breast for lunch (with the said cheese, lettuce and tomato). It certainly didn't make me full, and I always thought that maybe the blood was rushing to my stomach and leaving me sleepy like everyone tends to get around 3 pm. Like how they take a siesta in the afternoon in some countries. So everyone must have this experience with orexin after lunch? Or are we just more sensitive to it since we don't have Orexin A?

#26 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 28 August 2013 - 09:20 PM

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.

#27 Ferret

Ferret

    Member

  • Members
  • 788 posts
  • Gender:Female

Posted 28 August 2013 - 11:23 PM

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.

#28 ironhands

ironhands

    Member

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

Posted 29 August 2013 - 08:21 AM

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?



#29 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 29 August 2013 - 08:38 AM

http://edrv.endojour...ent/23/1/1.long

 

http://diabetes.diab.../1/105.full.pdf

figure 4 in this is interesting

 

http://www.nel.edu/2..._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.



#30 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 10:57 AM

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?



#31 ironhands

ironhands

    Member

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

Posted 29 August 2013 - 11:23 AM

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.



#32 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 11:56 AM

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.



#33 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 29 August 2013 - 12:15 PM

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.

#34 ironhands

ironhands

    Member

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

Posted 29 August 2013 - 12:24 PM

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.



#35 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 12:26 PM

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.

#36 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 01:05 PM

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.



#37 ironhands

ironhands

    Member

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

Posted 29 August 2013 - 01:13 PM

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.



#38 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 01:50 PM

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



#39 Ferret

Ferret

    Member

  • Members
  • 788 posts
  • Gender:Female

Posted 29 August 2013 - 01:56 PM

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!



#40 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 29 August 2013 - 02:26 PM

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...food-allergens/

 

http://www.elisa-tek...rForm130507.pdf

 

https://www.cyrexlab...36/Default.aspx







Also tagged with one or more of these keywords: work, non-medical, homeopathic, natural, organic