I had an idea for an unoffical short survey regarding different Narcolepsy symtoms

General Blog
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Hello All,

I recently had an idea for an "unofficial survey of Narcolepsy symptoms". From what I've read it affects us in some similar ways (the way Narcolepsy is diagnosed) - but the presentation and daily life can be very different in each one of us.

So I thought a few short questions might help me get a handle on what I and we experience day by day.

Recently a friend called (this was about 4pm) and when I told them I was headed down to sleep for a bit they said "well, just stay up and try to sleep normal times". I tried to explain that does not work for me and when I need to sleep, I must sleep. No matter what I try to shift to a normal "sleep schedule" (like the rest of the world) it does not work for me.When I need to sleep, I sleep period, sorry that is what I deal with. At times, sitting in church just pass out.

Later thinking it over when I woke up I realized "telling a Narcoleptic to "just stay up, is like telling someone "just hold your breath for the next 6 hours".

Even if I could stay up with my mind frosted, burned out, fatigued I could go to bed at 11pm and sleep for 30 minutes or 4 hours. That the dreams and other stuff I deal with are not predictable. That a person can have narcolepsy and insomnia. There is nothing I would like better than 8 hours of predictable sleep, no vivid nightmares, hallucinations, brain fog, fatigue, cognitive and memory failures and a day by day predictable life. But that is not my reality.

So I'll try to keep it to 12 yes or no questions to get a rough idea if there is a common thread among us.

1. Do you experience anxiety related to your unpredictable life?

2. At times are you depressed because of your unpredictable life?

3. Are you aware of the changes of "levels of Fatigue" day by day?

4. Are you aware of the "levels of cognitive change" through the day, hour or by the whole day?

5. Are you aware of levels of memory change through the day, by the hour or by the whole day?

6. Do you fully know and now understand how best to try to navigate YOUR LIFE day by day for you, as close to what the world calls normal?

7. Do you also deal with insomnia at times and or often?

8. Are you able to explain to people and be understood how the condition affects you?

9. Have you been pressured by a doctor to just take "medication" to treat One symptom?

10. Have you accepted your diagnosis, tried to make the best of it and adjust the best you can, regardless of the challenges and other peoples thoughts?

11. Have you tried any drugs and had negative effects or created new problems for you to deal with?

12. Have you decided to not use or add more drugs than you are already taking.

My closing thought is until you live this narcoleptic life you know almost nothing about it, and certainly more than any physician that I've met.

I think it's time to stand up and not be counted and treated by ignorance and misconceptions regardless from who they come from.

Sincerely,

Ranger

PS: Sorry, I have a little irritation recently provoked by a LTD company's questions.

How is you carpel tunnel doing, Anxiety, have you had any new sleep studies (NO, I had 5 and there was not one doctor brave enough to diagnosis the obvious.).

So it was my turn to start asking LTD the questions. How would it be if an hour from now you didn't know how or at what level you would function? Their response not good. How would it be if your friends asked you to come over next Thursday pm for coffee and you had to tell them I have no Idea if I could even drive or come over.? That would be very difficult...

The kicker was "how is my bilateral carpel tunnel doing? (My thought - Are you insane? - I didn't say that to them but was thinking it). Live my life and you would not ask me stupid questions like that. No, not good, CTS is not good and next I'll be wearing splints 22 hrs a day...Been wearing them every time I sleep for over a year now, with CPAP machine and with sleep mask. And wondering will I have a 2, 4 or 6 hour night and how bad will the dreams be?

Sorry for any mistakes, or questions and thoughts I've left out. Please feel free to edit and add to this because my brain is fading now but I've been thinking about this for a number of days and wanted to just get something posted. There is no "perfect time" for me...any more. I just want to find a cure for this.

Sincerely frustrated,

Ranger

PS: I you don't want to respond publicly please send me a message and I'll try to collate the responses I get and post them here.

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I would answer yes to all yes/no questions.

#5. My memory challenges change at times more often than hourly. I have given up on trying to gauge daily memory levels, the variants are too extreme.

#6. I don't think I will ever be "normal" but am okay with that. Normal is average & who wants to be average?

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Yes to all the above.
I have been dealing with this a lot of years.
To help your sanity you have to realize there is no cure. That will help you focus on what needs to be done.
Instead of focusing on what time you go to bed focus on a time to get up. Say 0700 every morning for about 3 weeks. Keep a log of when you take a nap or feel out of it the best you can. It will not be accurate because as your mind falls to sleep you will not remember every time to make a note. Over the time you might find a pattern.

Ido not socialize much and my wife and have learned to accept that. When we can we go to church or other group functions so a no show is not a problem.

Finally don’t bother to explain it to people. They will never understand. Would you if you weren’t living it?

I had a pamphlet I gave my pastor for fun. It said" Narcoleptics may fall to sleep in boring lectures or Sermons" . Ha ha

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Hi Ranger,

I'm sorry things have been rough for you lately. I guess I am lucky. I take meds and they help me so much - a night and day difference from when I wasn't treated at all. My meds make me almost normal and I hold down a very technical full time job and excel. If I didn't take my meds - I'm very disciplined about this - I would not be able to function at all.

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My days are unpredictable...if I have an upset (allow myself to get upset), my day goes down hill. Tired, cataplexy. As a younger woman I was able to handle anything. Whether it is age or complex health issues. I never shared my narcolepsy issue until just a few years ago. I would love to have 8 hours of uninterupted sleep without horrible nightmares. I don't go into a sleep pattern until the nightly nightmare is over. Try to explain to someone who does not have narcolepsy what these dreams are like. Or sitting on the sofa waiting to get out of a paralytic sleep phase. I take Lunesta. It is quite laughable that I take pills to keep me awake and pills to let me sleep a few hours. I had words with my son this morning....the rest of my day was a mess....did not go to a memorial service for a friend for fear of a cataplexy issue. Why the narcoleptic symptoms have increased with age, no one seems to have an answer. I live my life in two-hour segments (I'm retired). I take my short naps and then do what I have to do (driving to whatever). So two hours in the a.m. and two hours in the afternoon. I do not drive in the evenings. I don't get embarrassed anymore from cataplexy episodes. I just make sure that some in my meetings is aware. Computer is not in good shape....have to close.

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I do not have anxiety, but I do gt depressed. I wish I had more energy to do the things I want/need to do. I do work full time and I am a single mom. I get those things done each and every day. Things like housework, leisure things, errands, tend to be pushed back for another day. Meds make a huge difference. I can tell a difference in my cognitive function and my alertness as the day goes on. I yawn alot in the afternoons, but my neurologists thinks that more because Im not getting enough oxygen than being tired.

As for trying to explain it to people, I basically tell them my sleep cycle is backwards so I am constantly waking back up through the night. I just have to go about my day the best I can. I still my meds adjusted regularly. NuVigil stopped working recently so they are titrating me up on Ritalin now slowly. I just have to acept that there are days I can and days I cant.

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Hello All,

I really appreciate ALL of these responses! I'm hoping to learn from all of you and your experiences. One comment about how aging has affected this condition is rather interesting to me. All my life I was a hard working kind of guy but LIVED on massive amounts of coffee.

There is one thing looking back that now I can understand better and smile about: my ex would get angry if I passed out or fell asleep while talking... Now I realize I couldn't help it....

Please keep the responses coming everyone of us weaves a different thread into "the whole picture". Already I see it seems like the past focus is on just the "commonalities" of Narcolepsy. I think it is very important to look farther and wider to find answers and helps dealing with this. Don't study "one star", study the universe!!!

Sincerely,

Ranger

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Hello- I’m new here and this is my first post. I’m recently diagnosed with catleplexy. Everything has changed my life along with a bit of both anxiety and depression. My biggest challenge is driving and living in the country where everything is 40 minutes away I basically can’t go alone. Along with my diagnosis was a annual check up and found a lump. I had a biopsy and awaiting results. So there’s the anxiety. I thought the narcolepsy wouldn’t change my life that much but it has surcome it. My memory isn’t what it was. When I have a catleplexy attack I couldn’t even save my choking child. I’m not sure how anyone can fully accept this. For me mine started one way and has only progressed. Does it ever stop progressing and stop to just one way? I no longer can work a 8hr shift unless someone drives me home. I still do, which causes my husband and I to argue but to I’m not ready to say it noon, time for my nap, like the doctor says. Good luck to you, I enjoy reading your comments as it gives me comfort----

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Hello and Thank you for responding!

Start to think of this as a journey of discovery. In the beginning we all have a lot to learn about "how it affects us" in particular. The journey is sort of like getting to know yourself better. There will be moments when you start to understand things and find relief. Remember them and possibly write them down.

There will be times of exhaustion and discouragement - be aware of them but don't focus on them. They will pass!

I can't say it will ever stop, but as you become aware aware and accepting I think that you will find more joy and peace with this situation.

I know I when I was diagnosed, it was difficult because it was the second illness (it felt like a sucker punch for me). But it caused me to realize many things about what I had been dealing struggling with throughout my life.

I hope and pray that you and your husband can learn together about this condition and adjust for both of you. Now is the time to draw closer together and express it to each other.

Just posting this first post of yours is a big step for you in the right direction! Keep learning, seek and hoping and Posting!

Sincerely,

Ranger

PS: Even though you husband may be in "an adjustment period", be very thank for him and that you have him!

Encourage him, share, connect with him in "his meaningful ways" - food, walking, sports, movies, holding hands and all the kind other stuff :) He may begin to see that this change have some good things for him and You. Be close, be kind, be loving to him and Your Self.