Advice from a fellow Narcoleptic: RedbAdGE

I am excited to present the first post in my “Advice from a Fellow Narcoleptic” series, where readers can hear the advice and stories of other Narcoleptics. 

Today’s advice is from a Narcoleptic with the TAS name  'RedbAdGE.’  Some of you might recognize his name from the Narcolepsy forum, as he is a frequent poster. 

I hope that some of you will find his advice helpful, as I did.  It is amazing what we can learn from each other.

And with that, here is RedbAdGE’s advice to all of you:  

Ellie,
Here is a small contribution to the guest advice you are compiling for the blog.  I hope you find some of this useful.
1.  Perspective:  We must accept the fact that everyone on this planet has their own set of struggles.  Some mental, some physical, some both.  Some obvious to any stranger, others hidden deep within.  Some are self-aware, others not.  Some struggles come with a label, others not.  To feel sorry for yourself is to lose the battle and to lose control of your life.  Accept the gift of being self aware in your battle with Narcolepsy.  You know your enemy.  Do not let it control your life.  Embrace the many joys in life.  Understand the challenges and savor the victories, no matter how small.  Be thankful every morning for these gifts.
2.  Narcolepsy with Children:  I believe our children are not only a blessing, but can serve as a means to battle with our enemy known as Narcolepsy.  The love we have for them is like Xyrem for the soul.  We should completely embrace the waking moments we have with our children to the fullest and we will make more beautiful memories with our children than most parents ever do.  My children give me the will to fight.  Spend as much time with them as you can.  With toddlers, sometimes that means letting them crawl all over you when the tank is on empty.  I am a father of two toddlers, and I will often lay down on the floor and tell them I am a boat, or a bed, or an airplane.  They will laugh and climb all over me while I am lying on my back and fast asleep.  Yes I can sleep through that.  I am also very willing to volunteer to be the one to lay down with them at night if they get scared.  This way I am still sort of bonding while in dream land.  Most of all, my children are the biggest motivating factor for me to stay on my medication and focus on any and all means to enjoy life with them to the fullest.
3.  Sleep Paralysis:  At one point in my life I was experiencing sleep paralysis every night.  I was lucky to have my wife there to help me with this.  I would try my best to sleep with one hand on her arm.  I would focus on trying to move a finger to tap her arm or dig my nail into her arm if necessary.  She knew that this meant I was paralyzed and she would shake me until I regained movement.  Many people will say that it is best to just relax and enjoy it when sleep paralysis sets in.  If that works for you then I suggest you continue as it is the best solution.  For some of us that is not an option as the mind tends to play tricks on you that are not easy to ignore.
4.  Problematic Habits:  Look for any habits you may have picked up as a means to stay awake when the daytime sleepiness sets in.  For example, my ankles are in bad shape today.  It was only recently that I realized this comes from all the years of twisting my feet and ankles in order to keep myself awake with the pain while not drawing attention to myself.  This is something I began to do subconsciously as an automatic mechanism to combat the fatigue when I was in a classroom and working a desk job.  I imagine for others it could be anything from repetitive finger popping, rubbing your eyes too hard, pulling hair, scratching, biting your mouth, etc.

- 'RedbAdGE’

Thank you so much for your advice, 'RedbAdGE!’  I really appreciate it, and I’m sure that my readers do too. 

I especially liked the part about how you spend time with your kids when you are really tired.  It’s very creative, and I don’t think I would have thought of it myself.

Anyone else care to share their comments, thoughts or questions?

Looking for reader stories and advice/ Guest bloggers

Some of you might remember that I mentioned in a post on things I want to do with this site in 2010 that I wanted to find some other Narcoleptics to talk about things on my blog that I am not very familiar with.  While I know a lot about Narcolepsy, there are a lot of things that I don’t have much or any experience with, and I was hoping to find some people who might be able to share helpful information and their stories with my readers.  I also think that there is a lot that we can learn from each other, and so I would like to be able to facilitate that here on my blog.  Although the comments section is one way we can hear from each other, it seems evident that this is not a particularly good way to share if you have a lot to say (I know I always have a lot to say, lol).

Here is a list of topics that I think are especially good candidates for this:

• Narcolepsy and being pregnant
• Narcolepsy and having children
• Narcolepsy and severe cataplexy; taking anti-depressants for cataplexy
• Xyrem (I did take this medication for many months, but as there is so much interest in this, I would like to hear from others as well)
• Support groups
• Sleep Paralysis (I don’t have this symptom of Narcolepsy)
• Narcolepsy and Fibromyalgia (I know a lot of Narcoleptics seem to have this disorder, although I don’t have it myself)
• Narcolepsy and disability
• Other topic 

I would also be interested in posting stories about dealing with Narcolepsy in general or about topics other than the ones listed above, if you think that your story/experience would help other Narcoleptics to better deal with their own situations.  However, although it can be interesting for people to hear the stories of other Narcoleptics, I am not interested in stories for their own sake.  Rather, I am interested in helping people better deal with Narcolepsy and everything that goes with it.  Whatever personal stories and thoughts I share on this blog, I do my best to focus on what I think might be useful or helpful to others, rather than simply talking about my experience or about my day.

In keeping with the purpose of this site, I would ask that anything I post would also be focused on sharing information and experience that might help other Narcoleptics, as opposed to focusing on the story of one patient’s diagnosis/treatment/etc.  I would also have the last say on what I choose to post, and of course I would need to see it before posting it to make sure that it is up to the standards of this site (not only as far as content goes, but also in regards to grammar, organization, etc.). 

If you think that you have something interesting and new to share with my readers and are willing to share it, please contact me at the e-mail address listed in my profile.  We will then be able to talk and decide how to go about things (for example, I can imagine that if someone has a lot of information or experience to share, it might be better to break things up into a series of posts over a period of time).

I do not expect this to be a big time commitment, and of course I wouldn’t mind changing your name or using a nickname or other alias on the post to protect your identity.  Posts do not need to be long, and I personally try to make them at most 1,000 words.

I know that some of you have your own blog in which you talk about Narcolepsy, so I expect that you would not be interested, but I thought that this would be a great way for some of you non-bloggers to help other Narcoleptics and share your advice. 

Anyone interested?

Enjoy the weekend! :-)

P.S. Tomorrow (Sunday) we have a time change!  Don’t forget!

Sniffing peppermint oil and drinking something for a bit of pick me up

I wanted to share with you two of the things I used to do in college to help me stay awake in lectures where I was prone to falling asleep:  Aromatherapy and drinking something. 

I had a tendency to fall asleep or have micro sleeps during some of my classes, especially those near my nap times or first thing in the morning, which made it difficult to get anything out of the lectures or have readable class notes afterwards.  However, I discovered two things that helped me stay a bit more awake and keep me from constantly nodding off:  sniffing peppermint oil and drinking water or a hot beverage.

I know, it sounds stupid.  If Concerta can’t keep you awake in class, you have to laugh at the thought of peppermint oil or tea doing any good.  However, for me, these two things made a big difference.

For the peppermint oil, I would put a few drops of peppermint essential oil (not too many or your nose will hurt and your eyes will water) on a Kleenex, and then I would periodically sniff it during class.  I felt weird doing this (I had to wonder, did people think that I was strange? sick?), but since I would nod off otherwise, I was okay doing it. 

Now, don’t get me wrong, I’m not a big believer in aromatherapy, however, for me, I do feel temporarily more alert and awake after sniffing peppermint essential oil.  It may also be the case that it also helped having to take the Kleenex out of my pocket and stop taking notes, as it would break up the monotony of listening to the lecture that would otherwise put me to sleep.

Finally, we have the drinking part.  I found that if I sipped something during class, it also helped me stay awake a bit better.  Again, I think that most of this had to do with the fact that I was doing something different to break up the note taking.  Changing from note taking to drinking water or tea seemed to help keep me awake longer.  (I know, it sounds difficult to believe, right?)  You know how if you are having trouble staying awake somewhere and kind of nod off but are still working, something like dropping your pencil or having to push your mechanical pencil top to get more lead can jolt you awake again (even though you hadn’t realized that you were about to fall asleep).  For me, I thought a hot beverage worked the best, but a water bottle or something else also helped a little (If you read the article on temperature and Narcolepsy, than you know that drinking hot beverages might help you feel more alert and awake during the day, according to one research study).

I expect that with the aromatherapy thing, other scents might work as well.  Orange is also supposed to have an energizing effect.  I expect that other forms of using essential oil might help as well (such as peppermint tea, lotion, device that puts the scent into the air, etc.), although I haven’t tried any of them.

I have also on occasion used the peppermint oil trick to stay awake in other situations outside of the classroom.

Does anyone else use aromatherapy to help them stay awake?  Thoughts?

Article: Scientists claim junk food is as addictive as heroin

Yesterday, I came across an article that I had to share with all of you, even though it is not about Narcolepsy.  The title of the article, “Scientists claim junk food is as addictive as heroin,” pretty much sums it up: researchers at one institute have discovered that “the brain responds to junk food (salty, sweet, and fatty processed food) much the way it does to heroin.”

That finding alone was pretty shocking to me. 

Here I am, Miss “I’ve-never-so-much-as-touched-illegal-drugs-or- even-cigarettes,” thinking I’ve been so good about keeping away from the really bad for you, really addictive things, when it turns out that junk food (although not as bad for you as illegal drugs) is just as addictive…  My jaw just dropped.

But it gets worse when you read about the rest of their findings: according to this study, eating lots of junk food actually decreases the sensitivity of the pleasure centers of the brain (!), causing one to eat even more junk food just to get the same response as before.  Now you understand why the scientists are saying it’s like heroin…

I have been thinking about this article a lot today, and now I can’t help but look at junk food and obesity a bit differently.  Unlike, say, a heroin addiction, addiction to junk food isn’t really taken all that seriously in our society, despite the fact that so many people suffer from it.  If junk food is really as addictive as heroin (which it is in rats apparently), then clearly resisting it is more than a matter of finding more willpower.

If you have trouble putting down a bag of potato chips, one has to think now that the problem isn’t just a matter of willpower (as many people would imagine).  In fact, it’s far more serious… and after reading this article, I have to think that maybe we as a nation aren’t taking the problem seriously enough.

I also couldn’t help but ask myself, if the pleasure centers of the brain actually decrease in sensitivity when you eat lots of junk food on a regular basis, does that mean that you get reduced pleasure from other non-food related activities as well?  If the answer is yes, than that is extremely troublesome.  However, the article did not deal with this question.

I know that many Narcoleptics struggle with weight issues and food issues, so I thought that some of you might be interested in this.  I would definitely recommend that you read the article if you are interested, as it says some other things that are interesting as well.

Thoughts?

Concerta, Adderall, and questioning my own calculus

A few days ago, a reader posted a comment on my post about feeling tired after eating, saying that they used to feel that way before they started taking Adderall.  Which got me thinking: should I reconsider my decision to not try a new (and stronger) stimulant?

About three years ago, I resigned myself to taking a higher dose of (only) Concerta to treat my Narcolepsy, despite the fact that I wasn’t happy with how awake I felt on it.  I had tried to add Xyrem and then Provigil to it, but neither worked well for me. 

For years, Concerta worked great for me.  Now, I question how much it is doing to help me (and have questioned this for a long time now).  A few weeks ago, I was unable to get a prescription for Concerta from my doctor for a week because he was on vacation and so didn’t take any, and I was surprised to discover that I didn’t really feel all that different.  A little bit different, I suppose, but it wasn’t as noticeable as I would have expected it to be.

I have known for a long time that Concerta wasn’t doing much for me, but I have been reluctant to try one of the higher level stimulants because I know that they tend to have more side effects.  I have mainly been thinking about Adderall, because from my research I have read that it is the next strongest stimulant after Concerta (with Dexedrine being stronger than Adderall).

I am concerned about Adderall’s potential to cause depression and anxiety, as I have struggled with these things in the past.  However, I do see the same warning about people with these problems for Concerta on drugs.com, so I’m not sure how much I should be concerned about this (maybe all stimulants have such warnings?, I don’t know).

And, okay, I’ll admit, I’m also just a bit scared to try taking something stronger than Concerta, especially with all the warnings these medications come with (heart warnings, etc.).

However, now I have to ask myself, shouldn’t I at least try something else and see how I feel?  Sure, it sucks trying to change a medication because, at least for me, it seems that a lot of the time I just end up being disappointed when I get unacceptable side effects (in addition to the pain of trying a new medication). 

Now I find myself going back and forth between resigning myself to the sub-par medication I know (and whatever side effects I get from it- I don’t know anymore what those are) and the unknown medication that might very well be worse.  It’s a tough one.

Anyways, despite having said for 3 years now that I’m not willing to try Adderall or Dexedrine, now I’m starting to reconsider my position.  Now I’m starting to think that maybe I should consider my last remaining options – options which don’t sound great to me, but I do know that many Narcoleptics take these medications.

I am trying to gather more information on this from other Narcoleptics who take Adderall or another stronger stimulant, both to figure out if I want to try something else and because I know it’s going to be difficult to convince my doctor to prescribe me something stronger.  (It’s another story, but I’ve been told that here in Germany doctors normally only use Provigil or Xyrem to treat Narcolepsy.  It was quite difficult for me to get my doctor to prescribe Concerta for me (off the label), despite the fact that I had record of me taking it for Narcolepsy for at least the past 10 years.  I have to expect that it would be even more difficult to get a stronger stimulant, especially since I can’t point to two other sleep doctors prescribing this for me in the past.  I get the impression that Narcolepsy treatment is farther along in the U.S. …).

Do any of you take Adderall or another stronger stimulant (or have done so in the past)?  I would love to hear what you thought about it and what your doctor said about it, both to aid me in my decision and, in the case that I were to decide to try something else, to help me convince my doctor to consider prescribing me something else.

Thank you in advance. :-)