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Narcolepsy Over Time

Today’s topic is Narcolepsy Over Time. We invited four PWNs who have had a narcolepsy diagnosis for more than 15 years with narcolepsy to join us during our Denver conference to talk about how their narcolepsy symptoms and treatment have changed over time.

Narcolepsy Over Time roundtable participants, from left, Joni Canant, Naomi Holton and Joyce Scannell. Not pictured, Jerry Stillkind.

Narcolepsy Over Time roundtable participants, from left, Joni Canant, Naomi Holton and Joyce Scannell. Not pictured, Jerry Stillkind.

Meet our participants:

Joyce Scannell is Narcolepsy Network’s Office Manager. She lives in North Kingstown RI. She was diagnosed with narcolepsy with cataplexy in 1997.

Naomi Holton received her narcolepsy diagnosis in 1971 when she was in her mid-20s. She is from the Seattle area.

Joni Canant was diagnosed with narcolepsy in 2000. She is from Rockmart, GA.

Jerry Stillkind, from Washington, DC, was diagnosed about 20 years ago.

Q: How long did it take you to get a diagnosis?

Joyce: Well, I stated getting hypnagogic hallucinations probably at 6, 7 or 8 and then sleep paralysis, and always had sleepiness problems. So that’s a very long time. But when it got a point where it was really interfering, that was at least 15 years before I got diagnosed.

Q: Did you see multiple doctors?

Joyce: Oh, yeah. No one every said anything related to sleep. And it was an RN who finally told me to go have a sleep study done!

Joni: My symptoms started when I was a child. I would have sleep paralysis and would have a lot of hypnogogic hallucination and I still have those. I finally went in to my regular doctor and said I think there’s something wrong with me because I was at a drive through and they came out and knocked on my window to wake me. They thought I had a heart attack or something.

Naomi: I was one of the very fortunate ones. I was sleepy, but it didn’t interfere as far as I was concerned. But after I had my second child, then I was just so tired. The first time I went to my GP, he said ‘I think you have narcolepsy. Take some Ritalin.’ And I go ‘I’m not taking Ritalin without knowing,’ so I didn’t do anything. I came back the next year and said ‘I’m still so tired.’ And he said, ‘well, I told you.’ So then I went to a sleep clinic in Seattle and was diagnosed immediately. Then I heard that some people go for 15 years or so, and I’m going ‘Man! I was very blessed.

Jerry: In college and graduate school I never took an 8:00 class because I knew I couldn’t get up early. Mornings are not good. And I was a champion napper. I could nap on the ground, on a table. It was in the 90s when I said there’s something going on. That’s when I saw the doctor. But for about at least five years before the diagnosis when I went and saw the doctor I would say, ‘gee, you know, I’m really tired all the time and I need a couple of naps.’ So they do all kinds of tests and then the doctor says, ‘well, your blood tests don’t show any kind of problem. Would you mind going up to the psychiatric doctor?’ I started seeing a cognitive behavioral psychologist and at one point he said, ‘why don’t you have a sleep study?’ I did and that was it. But it took a psychologist, not an MD, to make a suggestion which panned out.

Q; What kinds of changes in your symptoms have you notices over the years?

Joni: Mine seems to be getting worse. I think part of that is attributed to stress. It’s definitely a factor. For me, emotion. If I have to come and have a talk about something that’s bothering me, I won’t remember anything that I said.

It was hard for me to quit work, so I’ve had to process this mentally. And I had to be a mom. I’m single because husband passed away 10 years ago. It’s very overwhelming, you know.   You’re home and you can’t do all the things you used to.

Time management is a huge factor for me. I’m no longer able to go to the grocery store. If I do go to the store, after I home, 4 hours later, stuff’s still not put away.

Q: Naomi, what changes have you noticed?

Naomi: I feel like I’m falling asleep just for a little bit and then wake up, you know — sleep attacks — so much more than I used to. I’ll be talking and all of a sudden midsentence I can’t remember what I was saying. It’s embarrassing. The other thing I’m finding is I can’t ride in a car because I’m out. And that’s embarrassing too because you want to go places with your friends, and we’re in a retirement community where everybody’s going and doing things and I don’t do any of that.

Joyce: You want to have a quality of life.

Naomi: yes.

Q: Have your symptoms changed, Joyce?

Joyce: If you started from day one when I was 6 or 7 to now, I would call it a roller coaster. Some symptoms that I had when I was younger don’t happen as. And obviously stress will make all your symptoms worse and in my case too, the humidity in the summertime — forget it. I have a saying: ‘I become a wilted piece of lettuce if I go out where it’s nice and sunny and humid.’ All my kids hate it when I say that!

I think narcolepsy happens worse if you’re under stress or if you sick even like if you get a cold or something.

Joni: We all have to try to find coping mechanisms and skills. Time management is a horrible thing for me especially if I’m going somewhere and know if have to be there a certain time I kind of panic, have an anxiety attack.

Joyce: Yes!

Joni: Because I can never be on time anywhere. I’ve tried in the morning to set an alarm, and say, ‘ok instead of taking 45 min to curl your hair, 20 minutes,’ or for whichever one seems to take me the longest, just so I can try…

Joyce: to get ahead

Joni: Yes! And its ridiculous sometimes.

Naomi: Are you not getting it done because you’re not awake enough or you can’t think?

Joni: I’m awake, but I get distracted.

Joyce: Because you’re afraid you’re not going to do it?

Joni: Yes, that’s right

Joyce; It’s like this panic and anxiety

Joni: It is. It is.

Joyce: Like when I have to get all the boxes ready for the conference, weeks ahead I’m already getting nervous. I don’t know why. I’ve been doing it for 10 years. It’s funny. I try to do everything — I get the boxes lined up ahead of time, I know if have them. I get the supplies. But I’m a nervous wreck until they’re all done and during the time I’m a nervous wreck, I’m tired, I don’t want to do anything no matter what. I’m on my medicines, so why is that?

Joni: I’ve gotten to where I avoid social things a little bit. Just because of the talking. Because it’s up here (points to head) and then when it comes out…

Joyce: Oh yeah!

Joni: Embarrassing!

N: You’ll say the wrong words?

Joni: Oh yeah. For lunch I had a hairbrush.

Everyone laughs

Joyce: I’ve had a hairbrush for lunch too!

More laughter

Joni: Or the milk is in the cabinet instead of the fridge.

More laughter

Joyce: That’s why it’s good to come here because we all understand each other!

Naomi: It is nice!

Joni: Or the phone. I take the phone with me and make voice notes on it. But then it’s like, where did I leave the phone? So a fanny pack is next, I think.

More laughter

Q: Do you have any tricks for helping to cope with symptoms, Naomi?

N: I do super mange myself too. I start super early if I need to get something done just in case it’s a bad day. And I will kind of go up and down. I will have days that I’m so sleepy that, just forget it. And then the rest of the time I’m ok, but then I’ll crash. So just being really organized. It’s hard. Here’s a spot for this thing and try to remember to put it there. And the phone, too, I never can find it. I put it in my pocket or somehow mange to attach it to me.

Q: Have attitudes towards narcolepsy changed in the time that you’ve known that you had it. Are people more aware?

Joyce: Well my family, all my daughters accepted right away. There was a two-year period where I was working to get disability and my kids realized, because they all did an affidavit to prove my symptoms. But my mother thought I should not go on disability, she thought it was like being on welfare. I said ‘no, that’s my money – I earned that. I had an 18 year career.’ As soon as I got approved, my mother accepted it, because if the government approved it!

Of course me working at Narcolepsy Network I get to meet a lot of people. I think family members are the hardest ones to convince that this is a real disorder.

Naomi: Yes

Joni: I know for me, it makes me feel guilty because I’m not able to do as much. I push myself harder and then I set myself up for more disappointment.

I wish that when you get the diagnosis there was a intervention team to come and sit down with the whole family and say this is what this is. Because if it was diabetes or something else, people get it, but narcolepsy you constantly hear go take a nap.

Joyce: You need to sleep more!

Joni: Go get some coffee.

Naomi: I still don’t think people accept it any better now than they have before. It’s good that the support group [Narcolepsy Network] is this active.