Narcolepsy Diagnosis: Details


happyThis bright-eyed guy was diagnosed with narcolepsy two weeks ago. For those of you who do not know what narcolepsy is, here’s a short explanation…

Essentially, the part of the brain that tells us when to sleep and wake up is a little confused (or a lot confused) in someone with the disorder. That means that while it appears often that someone with narcolepsy is sleeping a lot, they actually rarely, if ever, go through a long sleep cycle including the deep sleep that our bodies need.

The understanding by most people is that REM (rapid-eye-movement) sleep is our deepest, most refreshing kind of sleep, when that actually isn’t the case. There are three phases of non-REM sleep that happen before most of us hit REM, about 90 minutes after drifting off. Those stages are essential for immune system strengthening and repairing our bones and tissues. REM sleep is when we dream, and often when our brain processes information we didn’t during the day.

In short, someone with narcolepsy is generally sleepy all day long. And all night, unless they have insomnia, which is also possible, but I’ll talk about that in another post.

Backstory:

Because this is all new to us, I’m going to document our journey as it goes along. To start, here’s how we got to this point.

In 2013, BF (that’s my boyfriend), was diagnosed with ADHD. He was in a doctoral program at the time, graduated a high level university with a big degree in 3.5 years, and graduated with a high GPA in high school. He didn’t fit all the bill, but he had a hard time paying attention, and staying awake, in lecture. So we went with that.

He tried Adderall, which made him like the hulk. Not physically, though he is strong, but in a “I have too much intense energy and this is bad.” kind of way. Then onto Concerta and Ritalin, which helped. He was on 27mg of Concerta with a booster of 10mg of Ritalin at night after the Concerta ran out its 12 hours. (Though it doesn’t work this long for everyone)

Fast forward – he was still experiencing a fair amount of anxiety, so ended up going off of Wellbutrin, which he had been on for a couple years, and onto Lexapro. That did the trick – no more anxiety.

But then he was still reallllllly tired.

He would come home from work and sleep before eating dinner. Then would eat, and then fall back asleep. Weekends would be sleep-a-thons with lots of napping. And he just always felt crabby and tired. He couldn’t get his work done at a pace he was happy with, and had a hard time staying awake for conversations. We weren’t sure what it was, so we were just riding it out.

Diagnosis:

Then one day he fell asleep driving to work, and almost went in the ditch. That day was the end of guessing. He went in to see his general practitioner, who mentioned that he might have narcolepsy. He’s already been treated for sleep apnea, so we got his CPAP numbers checked at sleep med a week later, which were fine, and got a formal narcolepsy diagnosis. Thanks Mayo Clinic!

He also has cataplexy, which means when he feels a strong emotion, his muscles go weak. We didn’t know what that was at all, and thought it was funny that he would fall down when getting scared. (think fainting goats) But, most people who have cataplexy, if not all, have narcolepsy. So we got a name for that too.

Treatment: 

He was already taking stimulants for what now is likely a void ADHD diagnosis, so that dose was doubled to 54mg of Concerta with a 20mg booster of Ritalin in the evening. His doctor said that most people with narcolepsy take a bunch more than that, and he’s certainly not awake enough now, so we’ll see where we go on this front moving forward.

Because we requested that he be able to sleep well and not just be pretend awake his whole life, his doctor wrote him a voucher for Xyrem. It’s one of the most protected drugs in the world, and is often known as the miracle drug for people with narcolepsy, allowing them to hit non-REM deep sleep stages. We’re two weeks into a discussion with the drug company and insurance right now. It is delivered straight from the company, and has to be signed off on by many people before it is delivered to the patient. Stay tuned for updates.

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I think that’s long enough for now – no one likes overly long posts! I’ll write more soon. If you have any questions or would like any more details, please comment or send me a message!

…because love wins.

 

 

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Because ADHD isn’t just jokes.


BrainI know a large number of individuals who have adult ADHD (yes, as adults!). It’s a part of me that I always like to know people fully. So, that has recently opened the door of understanding that this is a widely misunderstood illness.

To just clear it up for everyone who will come in and say ADHD doesn’t exist:
1) No, not everyone who can’t pay attention has ADHD. Not everyone who makes poor choices has ADHD. Not every child is taught how to treat others, and they may not have ADHD. But that doesn’t mean that it doesn’t exist just because you haven’t been around it. So don’t judge the mother in the grocery store with the “naughty” kid.
2) ADHD symptoms can be made worse by a number of things: allergies, chemicals in food and in products, and even by some medication. So if people are particular about things, don’t tell them they are weird. You may not know why they do what they do. Be a bit flexible and help out!
3) Medicine is right for some people, and not right for others. But unless you have been there, you shouldn’t really give that opinion to someone who is there.

What a neuro-typical brain sees in someone with ADHD is often someone who doesn’t think things through before speaking (“What, are they stupid??” No, they’re often brilliant.), someone who can only make jokes and will forget what they were talking about (chronically…not like every once and a while), someone who is just “emotional” often, and someone who is generally everyone’s favorite person at the party.

But what makes me sad is that the people who make jokes, or say that they have ADHD because they stopped paying attention, or exile people because they don’t think just like they do, often don’t actually understand how lonely it is to have the illness.

So that being said, here is something that I have found very insightful as someone who doesn’t have ADHD, but loves people who do. I hope it’s helpful to you too.

b-adhd-magnet

Written by a child with ADHD:

Take My Hand

Take my hand and come with me
I want to teach you about ADHD
I need you to know, I want to explain,
I have a very different brain
Sights sounds and thoughts collide
What to do first? I can’t decide
Please understand I’m not to blame
I just can’t process things the same

Take my hand and walk with me
Let me show you about ADHD
I try to behave, I want to be good
But I sometimes forget to do as I should
Walk with me and wear my shoes
You’ll see its not the way I’d choose
I do know what I’m supposed to do
But my brain is slow getting the message through

Take my hand and talk with me
I want to tell you about ADHD
I rarely think before I talk
I often run when I should walk
It’s hard to get my school work done
My thoughts are outside having fun
I never know just where to start
I think with my feelings and see with my heart

Take my hand and stand by me
I need you to know about ADHD
It’s hard to explain but I want you to know
I can’t help letting my feelings show
Sometimes I’m angry, jealous or sad
I feel overwhelmed, frustrated and mad
I can’t concentrate and I loose all my stuff
I try really hard but it’s never enough

Take my hand and learn with me
We need to know more about ADHD
I worry a lot about getting things wrong
everything I do takes twice as long
everyday is exhausting for me
Looking through the fog of ADHD
I’m often so misunderstood
I would change in a heartbeat if I could

Take my hand and listen to me
I want to share a secret about ADHD
I want you to know there is more to me
I’m not defined by it you see
I’m sensitive, kind and lots of fun
I’m blamed for things I haven’t done
I’m the loyalist friend you’ll ever know
I just need a chance to let it show

Take my hand and look at me
Just forget about the ADHD
I have real feelings just like you
The love in my heart is just as true
I may have a brain that can never rest
But please understand I’m trying my best
I want you to know, I need you to see
I’m more than the label, I am still me!!!!

By Andrea Chesterman-Smith

…because love wins.

Beauty, beauty.


Your life is your lesson. You can’t change what people say to you, how they handle your quirks and imperfections, or even sometimes what you say when you’re not thinking. But you can learn. You can grow. And you can take everything we learned in school and make yourself the student, and life the teacher. Your life is your lesson. And you’re getting straight A’s.

…because love wins.

What loving someone with ADHD has taught me about being like Jesus.


Hi there. A preface – ADHD is kinda like this:

ADHD

The love of my life has ADHD.

That means that he can’t pay attention to what he wants to when he wants to.
That means that he can’t think through what will happen if he says what he’s thinking sometimes.
That means that he can’t sit still and listen to one voice for hours.
That means that he can’t always calm down his anxiety, because he can’t see clearly enough.
That means that for years he was treated poorly.
That means he thinks much less of himself than he should.
That means that he’s a brilliant man, who hasn’t always been able to live freely in that.
That means that he’s a person. A wonderful, wonderful, incredible person, with an illness.

ADHD is hard. Anyone who says that it isn’t or that it’s just a great benefit to their persona has probably not been treated, or hasn’t been stopped to be shown what their lives could be. I am not inferring that people cannot live life and be happy with ADHD. I am just saying that I stand in the position that a person with ADHD can’t know they need help because they don’t know how much better they could use their gifts if they actively treated their ADHD. Without being shown, that is. Jesus helped the sick. As we all should.

I used to be incredibly annoyed by people with ADHD. Like most people, I had no idea what it really was. I’ve made plenty of jokes about not being able to pay attention, and calling that ADHD. I used to think people with it were tactless, weren’t raised right, or had parents who just didn’t know how to discipline them. Or that they just talked more than I could handle. Of course, that can also be the case, but most of the time, it isn’t. It’s just being human with a brain with ADHD, and me wanting my life to be more comfortable.

Then I met this man.

He totally annoyed me. In fact, I knew that he had untreated ADHD, and I didn’t want to date him because of that. (I know, look at me thinking only inside the box.) I had had a few intimate relationships that didn’t go well and the other in those relationships blamed ADHD. I just didn’t really want to walk down that path again. But then I never went away, and he never went away, and it became something “we” faced rather than something just “he” faced.

I know what ADHD is now. And it’s not his fault. Nor is it his choice. Had I gone away, I wouldn’t have grown in my faith (the whole point of life) the way I have. And I would have missed the most fun, challenging, crazy, awesome, beautiful adventure of the past couple years. So I’m really glad I didn’t. And I’m glad I’ve learned these things:

1) Jesus is patient. I thought I was a lot more patient than I inherently am. 
Myyyy goooooodness, don’t pray for patience unless you want to learn how to be patient. And don’t expect to be able to handle medication trials and irrational anxiety really well if you’re not Jesus. Because I’m not Jesus, and handling those things are (were) really difficult. I definitely thought I was a patient person. And in some ways I was. Namely, when I fully understood situations, I was waiting in line or looking cool on a summer day. But when it comes to MY personal time, I wasn’t the best at that. Jesus is working on it. Thanks, ADHD!

2) I definitely apparently really don’t have a clue what is best for me. Jesus does. 
This fits well with the patience lesson as well. I didn’t exactly plan on having ADHD in my life forever. I was going to have a perfectly calm household where we ate nice popcorn in our perfectly clean living room each night. Where we each have 5 best friends and no tears. Nice ironed clothes and lots of perfect energy. Haha. That’s a little dramatic. But I wasn’t envisioning that we’d get to come up with awesome ways to work around forgetfulness for all of our life. But I also didn’t imagine having someone who wants to dance with me in the kitchen like a fool all the time either. See, Jesus knows better than me. And being organized is really actually super fun. Color coated post-it notes anyone?

3) Jesus makes people awesome. And as Christians in America, we’re bad at seeing that sometimes. 
One of the most challenging pieces for someone with mental illness of any kind is social interaction. I find that Christians (Sorry for saying this outright if it offends you.) are definitely cool with you being around as long as you’re working to “overcome” your issues by “letting Jesus have it.” When every issue is a spiritual one and they can just read the Bible and it should go away. And as long as we can all meet over coffee and they don’t have to deal with you crying, or being anxious, or fidgeting while you’re talking to them. But that’s not what Jesus did with the lady who touched his robe. He knelt down and talked with her. Just something I’ve learned that we can all do better – stop thinking that people are how they act. And sometimes we need medical care. That’s Jesus too. It’s just my job to show up and love. Not say how people need to be outright.

4) Jesus is LOTS of fun. 
Seriously. If you want to know that Jesus is fun, just try to get your brain to do something that it can’t. Usually it won’t work. But there’s always room to laugh. Everything doesn’t have to be straight laced and “perfect” to be absolutely wonderful. And sometimes the sheer unexpectedness of ADHD makes life lots of fun. I definitely see Jesus in new ways I wouldn’t have been able to before.

5) I cannot rely on my significant other to be my strength. But I can rely on Jesus. 
There have been lots of times when Ray wasn’t able to give me the attention that I needed because he just couldn’t. He didn’t try to be that way. He wasn’t a man that was just zoning out. He just couldn’t because his brain didn’t let him. And that was almost more annoying than just being able to blame someone. So I had to just go sit down with Jesus and let Him be who He was. And you know what? I’ve learned a lot about grace and Jesus’ love for me. And I’m so thankful for that.

6) Praying needs to always happen. 
ADHD has taught me to pray. And then pray some more. And some more. And some more. And to keep praying. And I’ll continue. Cuz it changes everything and makes the impossible possible. I prayed for healing for Ray. God sent me and taught me to be supportive and kind. Healing is happening.

I’ve learned tons, as we both have, but there’s a short version of what’s on the plate these days. We’ve been blessed to find some meds that work, and have been able to work through a lot of healing because of that medication slowing things down for us. And life is a lot less crazy. But I promise, there are going to be more crazy days. And those are going to teach me about Jesus, and love too.

I’m excited for that.

…because love wins.