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

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#1 SteffaneGrace

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Posted 06 August 2013 - 10:46 AM

So the title basically says it. Aside from the medications, what do you guys use to survive day to day? I currently take Xyrem and am starting back up on Adderall. I didn't want to go back on it, but the fight to not go home and nap is just overwhelming without any kind of stimulant. And I figured that an energy drink a day was slightly less healthy. And well...expensive....

 

I work in an office. Alone 50% of the time. Its a small office with just me and the two owners. My job is great, very flexible and my bosses are exceptionally awesome and very understanding. For better or for worse, I basically make my own hours. It is 10-4, but if I want to come in late I can, if I want to leave early I can, etc. As long as I get the work done.

 

Since the diagnosis of N with EDS and with the addition of meds, my brain has become foggy. My concentration is lower than it used to be. I know these are side effects from Xyrem and should go away. But for now, it can be a bit of a struggle. I also have glasses (very bad eyesight and I am only 30...) and my vision seems to be blurrier. Not sure why that is. But I digress.

 

Back on topic. So what do you guys do to make it through the day? Is it just caffeine? Vitamins? Tea? A certain morning routine? I am trying to figure out what to do. I am a "self saboteur" so I am prone to giving up. Which is why sticking to a routine is difficult. And yet so important with N....*sigh*

 

 

 This was a bit more of a rant than I had anticipated. I hope you all have some insight regardless ;b



#2 sk8aplexy

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Posted 06 August 2013 - 11:25 AM

Not really for, through the day/s, but more of general 'lifestyle adjustments' which have helped overall the Narcolepsy with Cataplexy as well as much more...

[These have helped 'me' dramatically, I do not take meds as they've only cause me more negatives, than positives...]

-Large diet changes (gluten/dairy free + avoiding sugars, besides natural fruits).

-Learn and recognize what you are allergic to and take strides on avoiding/ridding/minimizing them (there's a lot to that like food/s, environment/s, methods of washing clothes, changing clothes and washing body after exposure to allergens, etc...).
-Sleep hygiene (quiet, dark, comfortable temperature).
-Sleep routine (following the same general hours that I sleep regularly).
-Daily walking (at least 1 mile, usually many miles).
-Daily stretching and calm (basic exercises [yoga like] focusing on breathing and
center/core/body).

-Usually anymore a daily nap (when it happens, I can not force or plan it and sometimes, like Hank describes below, they backfire).
-Minimizing stresses and anxieties (through understanding of the disease, as well
as stepping back from being hard on myself to attempt so hard at just
participating in the 'normal' ways within so much of everyday societal/cultural
behaviors/activities).
-Knowing as well as remaining within, my limits and boundaries (occasionally, but
only with caution and awareness, stepping outside of them -as to not live
entirely within a bubble, or sheltered-).
-Being very conscious of one's self, is of crucial importance...



#3 DeathRabbit

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Posted 06 August 2013 - 11:55 AM

I just try to eat healthily enough and exercise. Anything that will normally promote wellness is probably a good idea. Some planned naps can be a good idea at times, as well. Can you just nap in your car at work? And for me, it also seems to help to not oversleep either. If I sleep too much I will be foggier and will have insomnia the next night.



#4 Ferret

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Posted 06 August 2013 - 12:09 PM

That was the most low key rant I've ever read...ya gotta notch it up a bit if you're going to get ticked off enough to make some serious changes in your life. Everbody's different and you have to learn to tune into YOUR body. I was diagnosed at 35 and I'm now 62. You have many more choices in meds. For me, the only choices available were Ritalin to wake me up and Imipramine to help with the Cataplexy. It was a disaster...after six months I had to stop the meds and spent 18 months recovering at home. When I stopped feeling sorry for myself, I got mad and started researching...in medical books...no Internet in '88.
Pay attention to what you eat and drink and keep a diary of that and how you feel that day. You may start to notice a pattern. I have a food sensitivity to nearly ALL food additives and have become a chronic label reader...no nitrates, nitrates, sulphites, sulphates or MSG (in ALL of its deviously named formats). It's easier to just prepare good wholesome homemade food. Others, like Sk8aplexy, have eliminated all gluten and dairy. It's trial and error and takes time to figure out what works for you. Our intestines and its "good" bacteria comprise the largest area of our immune system. Since N is an autoimmune disease, you'll want to keep it in tip top shape. When you take an antibiotic, it kills everything...bad bacteria AND good bacteria. Replenish with a good probiotic that has more than one kind of Lactobacillus in it.
Do not drink alcohol.
Find out what sleep schedule works best for you and STICK to it without fail. For me it's a nap from 2 until 5 and night sleep from 11 pm until 6 a.m.
That's all the important stuff.
The following, I wouldn't recommend to anyone but it's kept me going since '89. That's the year I started smoking and the fog cleared and I started to be able to function better. You can read about the effect of nicotine on brain synapses on the Internet.
And I drink diet coke.
My bad...I'm here for a good time not a long time. No lectures please. Our choices are our own.
I started taking Provigil 100 mg a day two months ago...my first med in 25 years. When I'm awake, I am clicking on all cylinders. I like it and have had no side effects...but I also haven't changed anything else in my life.
Best of luck in your search of what works best for you...be patient.

#5 Hank

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Posted 06 August 2013 - 12:11 PM

Keeping my life meaningful and active is HUGE for me. I cannot allow myself to live a boring life where I just go through the motions.
Aside from work and family, which is enormously meaningful (but also very stressful at times), the following things have helped me:
- I train abused Pitbulls. We have a former "bait dog" who was used as practice for fighting dogs. He is gentle as a lamb and was deeply traumatized when we started working with him. Our second pitbull is a newer addition who has acid burns on his face. He was removed from his home when neighbors witnessed his owners throw acid at his face. Working with them and against the stereotype of the breed is enormously rewarding. They also bring calm to my stress and always give me a reason to just go for a walk. They also give me a sense of safety for my family since Cataplexy would prevent me from stopping an intruder- Nobody would mess with our home.
- I have a strong personal faith. I love CS Lewis, Viktor Frankl- Man's Search for Meaning, and the book of Matthew.
- The poem IF by Rudyard Kipling is kind of how I move through my life- love it.
- Exercise has many purposes for me- health, sleep aid, stimulant, mind-clearer. It also gives me non-work related goals to work toward. I completed a triathlon before diagnosis. I have had a rough time for the past 1 1/2 years with medications and have cut back drastically. I will start gearing back up this fall with the goal of a sprint triathlon with my 2 daughters next summer.
- A predictable sleep-wake schedule is critical for me.
- no important conversations after 7 pm. When I am in a "crash", I MUST avoid anything emotionally charged, keep things quiet and retreat.
- I rest as needed. If sleep happens, I let it happen when I rest. If I try to force sleep, it backfires.
- I avoid sugars/ high carbs daytime and indulge late evening.
- I schedule time for the things I hate- administrative stuff that is both boring and stressful. I build in rewards and break it into attainable chunks.
- No scary movies. Eliminate high-drama people (2 teenage daughters is enough). No sad stories on the news.

When my life is meaningful, I am more positive, motivated, enjoyable. Life with N (either diagnosed or undiagnosed) is a challenge. It is my job to make the experience as enjoyable as possible- no medication can give me that.

#6 DeathRabbit

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Posted 06 August 2013 - 01:58 PM

^ I did read an article the other day that showed that purpose is more healthy than just pure happiness in life. So allow me to quote Agent Smith from TMR: "It is purpose that created us, purpose that connects us, purpose that pulls us, that guides us, that drives us; it is purpose that defines us, purpose that binds us."



#7 Hank

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Posted 06 August 2013 - 02:27 PM

I like that quote. What is TMR

Life can be pulled by goals just as surely as it can be pushed by drives- Viktor Frankl

and another

Ever more people have the means to live, but no meaning to live for.

Frankl was a Neurologist, a Psychiatrist and a Holocaust survivor. He wrote about his experience of how he mentally survived life in a concentration camp by finding meaning in his suffering. Neuro, psych, suffering and judgement- those are familiar themes to many of us.

#8 DeathRabbit

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Posted 06 August 2013 - 04:31 PM

The Matrix Reloaded. That was the scene right before when all the Agent Smith clones were coming into fight Neo.



#9 Livi

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Posted 28 August 2013 - 07:29 AM

I' m hoping that responding will help me pick myself up again.

A regular sleep schedule is really important for me.
If I sleep too long (over 8 hrs) I will be extremely wasted all day.
Drinking lots of water helps, 50-64 oz per day
Only decaf coffee in the morning (decaf Gevalia is awesome), or this coffee-like herbal drink called Teeccino that is pretty good! Whole Foods has it, or online.
Half-caff coffee in the afternoon (need that boost not being on meds)
A relaxed government job ;) with a flexible schedule
Exercise works wonders for mood and gives an energy boost.
PROTEIN at every meal & in between meals (snacks such as Greek yogurt, mixed nuts, cheese, veggies & hummus). After I eat protein I perk up like a plant that just got watered! I always feel better when i've had protein for breakfast (ex. egg whites with cheese, oat bran cooked in milk with added walnuts).
Not eating take-out, fast-food, frozen dinners, processed meats, or anything that doesn't have all-natural ingredients.
No sugar or alcohol until evening. although they tell you alcohol disrupts sleep, I really don't care.
As yet I haven't eliminated gluten (or dairy??? Why eliminate it?) as I'm not sure about the need to do that.

#10 ironhands

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Posted 28 August 2013 - 08:59 AM

Kill the gluten.

 

The human gene HLA-DQB1 is associated with both gluten sensitivity, as well as narcolepsy.  Gluten impacts ghrelin and glucose, and is connected to autoimmune disorders, which narcolepsy is also linked to.  There's a lot of evidence supporting a connection, but still nothing conclusive. 

 

Many people will tell you they feel their symptoms improving once going gluten free.  Won't work for everyone, but try for a week or two. 

 

I tried cutting gluten out a few years ago and felt much better, I didn't even think of N until a few weeks ago, but I did suspect an underlying gluten issue along with depression, but now it's looking more and more like the same thing.  This week has been really rough for me, likely because I've been eating a lot of bread. I'll stop tomorrow and I'm sure in a few days my energy and sleep will be better.  I'm not on any meds other than a multivitamin and b12, no sugar, no alcohol, no caffeine.  Only eat once a day, too tired to make breakfast, so I'm usually too tired to prep a lunch as well :P



#11 Ferret

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Posted 28 August 2013 - 10:33 AM

Ironhands,
Thanks for the re-introduction to http://www.zombieinstitute.net by bringing up an old thread...I lost the bookmark when my laptop died. I would suggest EVERYONE read it...especially if you're fairly recently diagnosed and possibly still have some orexin producing neurons left.
The gluten and dairy are not problems for me and I did eliminate both for about three months. But, I laughed my head off at a couple of statements that Heidi made...one with regards to the length of time that someone has had Narcolepsy..."20 years...oh well". In other words, I'm toast having been diagnosed in '86...my orexin producing neurons are probably long gone and, perhaps, that's why the elimination of gluten doesn't seem to help me much.
The other funny was her rant on non-smokers. http://www.zombieins...net/Smoking.htm
I rarely have sugar (not even fruit) and tend to follow a low carb diet anyway...can't believe that my nose doesn't twitch considering the number of salads that we eat.
Eating only once a day is a huge overload on the metabolic system. Eat three square meals to balance out your energy requirements...low carb.

#12 ironhands

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Posted 28 August 2013 - 11:04 AM

That was my thought towards people who see no improvement; that they're too far gone for the gluten to have any impact.  For those with milder symptoms or recently diagnosed, I think it's potentially a huge benefit to cut the gluten. 

 

Right now I'm actually looking up e-cigs lol.  It might help, until I get on some meds.

 

Heidi has some great info, and I think she's really on to something.  Not sure if I agree with everything; but it's almost moot.  There almost certainly is a connection between the two, and cutting gluten from your diet won't really cause any harm, so there's no risk in trying (besides the intense cravings for garlic bread!!!!)



#13 Hank

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Posted 28 August 2013 - 11:05 AM

I have strong concerns about this website and the assumptions made of this. It may contain some interesting tangents. However, it is filled with junk science, anecdotal information and false conclusions.

Many of us have struggled with being taken seriously by medical professionals. Information from this website can serve to increase that lack of credibility. It is "fringe" at best.

It troubles me when those of us dealing with N and C gravitate toward junk science and self indulgent theories. It makes me far less interested in participating if that is a direction where others are gravitating. At the same time, it makes me cringe for those seeking information and insight when these ideas are valued and held out as worthy.

I have seen new participants picked out like weak members of the herd by self appointed experts of the fringe.

Seeing this website rekindled makes me nauseous and sad.

#14 Livi

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Posted 28 August 2013 - 11:37 AM

Hank, what do you think about eliminating gluten?   Are there any medical journal articles about the benefits of it?

 

It would be a big deal to me, especially if it's very strict -  for example not eating oats or brown rice because of possible "contamination" with gluten.   Having to buy everything that actually SAYS "gluten free" on the package.  It's just too much of a hassle if I don't need to.

 

I have no idea what that zombie website is, and since I work in a scientific research lab, I'd rather go to the medical literature.

 

I am hoping that since protein gives me a boost that I actually do have some orexin cells, and that protein will give them a boost to make more?  



#15 ironhands

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Posted 28 August 2013 - 11:53 AM

I've had huge success just cutting the big sources - pasta, bread, and beer.  I wouldn't go all out and resort to potential cross-contamination, that's really only an issue for those with celiac. 

 

I don't think there are any hardcore journals on it as how it relates to narcolepsy, since it's a big fad to cut gluten right now (like atkins was), a lot will dismiss it, made worse by those who don't give any attention to N either.  If there are any official studies, I would love to see them.  I will certainly be asking my doc when I see him next, he seems to be very knowledgeable.

 

Since the treatment for N is all about managing the symptoms, gotta just see what works for you, and the testimonials of others.  That's the great thing about this site. 

 

Whether or not gluten directly messes with orexin, or, cutting it just makes people feel better in general, is still up in the air, but many people here have cut it and feel better.  As I said, I always thought it WAS the gluten that was the problem (most here go the reverse route).

 

What facts do we know, for certain?  The HLA-DQB1 gene impacts narcolepsy, celiac(gluten intolerance), diabetes, and autoimmune diseases.  This should indicate a connection between the two conditions.  http://ghr.nlm.nih.gov/gene/HLA-DQB1

 

Try cutting bread and pasta for a week, see if you feel better.  If you do, great.  If you don't, enjoy your pasta :P  I drop on and off gluten free all the time.  I feel like crap this week, and my gluten intake is high.  I will go off next week, and I'm certain I'll feel better.



#16 Livi

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Posted 28 August 2013 - 12:26 PM

Ok I will try to eliminate the bread and pasta for a week, but I already know that I would feel better if I cut all  carbs, except for fruits/veggies and maybe half a sweet potato.  

 I would even need to cut carbs that are gluten-free to feel better, such as white rice, and even beans, which are a good source of fiber which I also need.  

 

Cutting carbs has nothing to do with gluten, per say.  Even when I ate gluten-free cookies I still felt bad because sugar makes me tired.  

 

Then again, I just had a chicken breast with provolone, lettuce and tomato, and I am ready to zonk out any second now.  

 

 

Thanks for the link, I will check it out.



#17 ironhands

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Posted 28 August 2013 - 12:36 PM

I gorge on potatoes rice and beans.  A lot of asian/south american food.  I avoid most sweets as well, they make me really tired too.  I usually cook up a batch of tamales every week and a big pot of rice.  lasts a few days



#18 Livi

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Posted 28 August 2013 - 01:03 PM

Why can you do that and I can't??   :angry:    Potatoes and rice, and especially rice noodles, are the worst for putting me to sleep.  Basmati rice is not bad, because it has a lower glycemic index.  I basically have to follow the Glycemic Index diet, which tells you how fast the sugars in each food gets metabolized by the body.  

For example, Jasmine rice has a high glycemic index so I can't have it because it acts just like sugar in the body.  Basmati rice has a low glycemic index so it is metabolized slowly and doesn't cause an all-of-a-sudden sleep attack.  

 

Wish I could eat like you.  



#19 Ferret

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Posted 28 August 2013 - 02:02 PM

Hank,
There's a fair number of her personal assumptions that are not backed up by science and I take them with a grain of salt. However, if you start at the Research Section and move your cursor down in the right hand column on each heading...if the cursor becomes a hand then the heading will expand into more detail. Included, in that detail, are words that are highlighted in blue...click on the blue and it nearly always further expands into Official Scientific Studies that back up what she's saying. Makes for interesting reading.

#20 Hank

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Posted 28 August 2013 - 02:45 PM

One of the cornerstones of junk science is the use of credible data and information. What make junk science junk are the conclusions and leaps it makes.

I have observed that person target new people in a manner I find distasteful.

If there is useful information, it can certainly be found elsewhere. It is the motives I find questionable.

Gluten free- fine live it up. If it helps- wahoo. But drawing causal links and conspiracy theories to me is just plain goofy.

My concern is focused on those searching for answers and information who may fall prey. I just don't like it- it is for good reason- and I cringe for anyone new who stumbles into that site unknowingly.

I came here interested in learning and knowing from others- I wave the warning flag on this. I do not say any of this lightly.





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