Ever feel like people think N. is an excuse for being tired?

Rachelle - posted on 01/24/2010

YES!!! I think even some people in my family feel taht I am using an excuse...I have heard..."im tired too..."...they dont get it...im tired ALL the time...and its not just tired, its almost exhausted...I dont know how you do what you do...all that you do...on another note...how did you do pregnancy with being off meds? i was told i cannot take my meds (adderall and provigil) the whole time i am pg...cause it can cause huge problems...i am scared to go off my meds...scared i will sleep for 9 months straight...any advice you can give or any supportive words would be helpful...i really want a second child....thank you so much. Rachelle

Catherine - posted on 09/11/2009

Hello just thought I'd say hi and that its so interesting to finally read stories of people going through the same things as me. I have never known anyone else that has had narcolepsy and my friends and partner just think if I dont take my tablets and 'my legs collapse' as I call it, is hillarious. Not sure what else to say look forward to reading more interesting stories :)

Bonnie - posted on 08/15/2009

In regard to educational programs, I watched a very interesting one that discussed the cultural implications of hypnogogic dreaming (which is almost entirely attributed to narco). It explained that incubus/succubus throughout the generations and more recently stories of alien abductions are likely hypnogogic dreams. I get that. In mine, "people" come into my room and sit on my bed. Sometimes they push my head down into the pillow. I'm very careful about not watching or reading horror because my dreams are so tactile and real. If I were a fundamentalist, it would probably be the devil who comes to visit. If I believed in aliens, it would be aliens. Vampires, incubus, evil clowns--I'm glad that it's just people, and they are usually quite friendly.



Pre-medication, I would also have a sleep/wake melt that would lead to some strange daytime hallucinations.



Vanessa, I teach high school English. We have the talk at the beginning of each year where I explain narcolepsy and what to do if I have a rare bout of cataplexy. It actually happened for the first time in my career a few months ago. You would have thought that the students who were lucky enough to be present (a small handful) had won the lottery. They saw Ms. Richardson, "biff it hard." : )

Bonnie - posted on 08/15/2009

My public service announcement comes when people tell me how lucky I am because they suffer from insomnia. "I just wish I could sleep like you." It takes everything in me not to slap them silly as I explain that unmedicated, I could sleep 14 hours of my life away and still feel like they do after being up all night.

Julie - posted on 04/10/2009

I don't have any past painful memories that would trigger my current issues.  My talking in my sleep so excessively is due to (just found this out) also having Obstructive Sleep Apnea.  I have a CPAP machine, which we call Darth Vader.  Apparently when you gain weight, which I have since I was diagnosed with all this fun stuff last year, Darth Vader needs to be adjusted.  I have another sleep study test next Sunday Night through Monday afternoon and they will be able to make those adjustments and then the Dr. thinks the talking issue should subside.   My husband sometimes would like to have my mouth wired shut TeeHeeHee

Laura - posted on 04/01/2009

Julie, maybe you could have your mouth wired shut.??lol

I am taking Seroquel, and Xyrem, these knock me out and a tree could fall on the house and I would never know it.

I was talking in my sleep and having seizure activity. I was thrashing so hard that I would wake up with bruises and sore muscles. I do have PTSD also, so which is it?

Do you have any other problems or past painful memories? It is not all about N. Sometimes there are other sources.

Julie - posted on 03/31/2009

Hello to all,

I have an appointment with the Sleep Specialist on Thursday to see if he can tell me why I am talking in my sleep so much that my husband is getting no sleep.  Hopefully he will give me some good news that does not involve another medication.  I feel so guilty that he is not getting enough rest.   I hope we can figure this out 'cause the other thing that scares me is if my kids hear me talking in my sleep and they are hearing inappropriate things. 

Julie - posted on 03/28/2009

Interesting you all brought up the talking in your sleep.  i do and it has gotten so bad that my poor husband does not get much sleep.  i am going to see a new sleep specialist here in fort wayne to see what can be done about it. not only do i talk in my sleep, but i guess i act out my dreams also.  poor hubby.  he sure does have to put up with a lot. 

Vanessa, volleyball is my fav. sport.  i hope at least one of my girls likes it as much as i did/do.  had rotator cuff surgery, so that has hindered my playing. 

Laura, it makes me mad that none of the "talk shows" take N seriously enough to have a show on it.  it affects so many people, not just those that have it, but their family and friends as well.  I think of all the students that might have it and they are written off as being stupid or lazy.....when they are probably very intelligent people.  If we all wrote into dr. phil/opera i wonder if it would make a difference.  i am also going to contact narcolepsy network and find out what they are doing to educate the public. 

hope you all have a good night.

ttfn........

Laura - posted on 03/24/2009

I have conversations with people in my dreams and think they really happened.

Laura - posted on 03/24/2009

I know what you mean. It is so misunderstood. I am a nurse and I think other nurses are interested and will listen, but no one can really understand. My husband is just now starting to. TV did not help the stereotype (however you spell it. Sorry we to our high school teacher). When I hit the wall, like you said Laurie I am done. I get physically sick and my body hurts.I get very anxious and fell the need to get back home to my safe little house where I can let down. Is this weird??

Do you think we should all appear on Oprah? Maybe to make others aware.

Vanessa - posted on 03/21/2009

I coached high school volleyball. I teach high school science and both of my boys are adopted, so we were looking for ways to make extra income. At one tournament, a parent had to drive me home because I couldn't stop yawning and knew that I had to sleep soon. She picked up my husband and took him back to my school to pick up my car! How embarassing...

I am having therapy right now and last week I feel asleep while the muscle stim machine was on. When the timer went off, I woke up and another therapist said, "welcome back to the land of the living."

I don't know if all of you experience this, but my dreams are extremely vivid and seem SO real. I have had numerous conversations with my husband where I assume he knows what I am talking about, and after a few minutes he will tell me that it must have been something from my dream. That still kind of freaks me out because I always believe that we really spoke about that topic. I also find that I can remember my dreams better than anyone I know. My alarm clock has to be across the room from me because I can get up, hit snooze and then climb back into bed and fall immediately to sleep and pick up my dream like I was never conscious!

Julie - posted on 03/21/2009

good morning gals,

i love sharing my "n" moments with people that actually KNOW what i am going through.

here is a little more about me, just so my future posts make sense and you don't think i have other major problems......like being crrrraaaaaazy!

i have three kids, ages 10,9,71/2  and oh yah, actually a 4th child who is 40.  he resorts to my 4th child when he comes home from work.  which most of the time is great, however we have a hard time having "adult" conversations.  come to think of it, i promised myself in middle school when my brother was in the play "peter pan" that I WOULD NEVER GROW UP (like peter pan and the lost boys).  so i guess that means we have 5 kids living in our house..........

when i was diagnosed a little over a year ago, i realized one thing. going on meds could be a really great thing or a realllllly bad thing.  when i first went on my meds, my husband had already moved to indiana and the kids and i were in michigan waiting for our home to sell (that's a funny one......homes are not selling in michigan)  last april, my husband and i decided to move the family even though the home had not sold because the weekly separation the kids had from their daddy was taking it's toll and in our home family comes first. 

the kids and i moved april 9th of last year and about 2 months after that i remember making a comment to my hubby about how i was not sure i was liking the fact we moved, because i felt like his job had changed him a tad bit.  my hubby, being the very quick thinker responded that perhaps it was not him that had changed, but it was me 'cause of the meds.

I shared this story with my best friend in michigan and she lol!  she told be my hubby was always like that and it WAS me that was changing. 

That part has been hard on my kids because before when my brain was too fuzzy to care if they picked up their toys/bedrooms.  now i feel like with some things, not all that i have gone completely the opposite directions.  i have found that if the kids don't put their shoes on the shoe rack i flip out (that might be a slight overstated) however that kind of thing would have never bothered me before.

i was mailing something the other day and was having a conversation with the employee that was helping me.  (a little more background, i have to have a name for everything another after med thing..for example our spare bedroom in the basement is called the spare ooom-after the lion, witch and the wardrobe movie). our kitchen eating area is the "hidden mickey" cafe. i know it's the whole not growing up thing and being complete disney freeeeeks.)

back to the mailing my package, i forgot what i was doing and all of a sudden i thought, i am like dori in finding nemo.  so instead of referring to things as "n" moment around our house, we are now calling me "dori".  we have to add humor to this or it would drive me to the nut house.

Vanessa, i would really encourage you to get someone to clean your house so that both you and your hubby can have that pressure lifted off you and have that extra stress free time to enjoy as a family.  don't feel guilty about it. you can not help what N does to your body and you SHOULD NOT FEEL GUILTY about any part of it. i know easier said than done. what sport did you coach, by the way.

Pamela, love how you refer to your mom as mum.  it is always so fun getting to know someone from another country.  your comment about falling asleep on a bench.  i know all about that.  it was not on a bench for me, but if i don't get my afternoon cat nap i can be in big trouble.  on thrusdays, my two oldest take piano lessons from one of the teachers at the kids school.  my youngest and i sit in the hall and there have been time where i have fallen asleep waiting for the lessons to get over.  fortunately the teachers know about my "blessing" and they understand.  it is sad that those powers that be "tv personalities" don't do a better job of educating the public.  i guess they would rather spend their time talking about worthless things that most of us don't care about.  pamela, how old are your kids?

well, i will stop for now.  i tend to get a little carried away even when typing,

have a blessed day......it's saturday, so you all should get a nap in today  :o)

Pamela - posted on 03/21/2009

yeah i completly understand i have been diagnosed just over a year and in the uk most people dont even know what n. is. i fall asleep everywhere although i know when im going to. I was in a shoppin centre eith my mum and kids my mum went to a shop and my kids were sitting on a bench in front of me i dosed off and the kids started playin around my mum woke me up cos their was an old couple pointing at me like i was some sort of freak lol

Vanessa - posted on 03/20/2009

Laurie and Julie, it's nice to meet you. I do feel like I hit a wall sometimes. When I do, I cannot stop yawning and my eyes consistently water, so it actually looks like I am crying. I just retired from coaching this year (which made my days even longer) and the kids and parents used to think that I had severe allergies!

When I get up in the morning, I have to get up slowly by hitting the snooze button a couple of times. If I ever just "jump" out of bed, I will start the day with a lot of energy, but completely crash around 10:30. I do try to take a nap if we have plans on the weekend or something, but my naps are usually at least 2 hours. I can never get up after 30 minutes...it actually takes me a long time to fall asleep usually, unless I am to the point where I tell my husband that I am about to pass out, becuase that is what it feels like.

We don't have someone coming in to clean the house, but we have talked about it numerous times! It's hard because I feel like most of the work at home is being done by my husband and it is not fair for him to do everything, but I keep fighting with myself saying that I should be able to keep up with the chores, but the only time I have enough enery is on the weekends.

On most days with my meds, I can function at my "normal" level. I just wish I understood why on other days I feel so drained when it seems as if I haven't changed my schedule at all. Even though I function better since taking the meds, I feel like my memory has gotten worse. Much worse. I need to write lists down all the time. I am not organized because I forget where I put things or like Julie said, what I had planned on doing at that moment anyhow. Thanks for responding girls!

Julie - posted on 03/19/2009

Hi Vanessa,

Thanks for sharing your story.  It's true that people just don't get what it is like to live with Narcolepsy.  I also feel that some people think it is an excuse.  I remember when I was pregnant with my three kids, I was so tired.  A tired that I had not experienced before.  Not like from being up late the night before.  I never had morning sickness, just so tired.  I tell people that having N is a gizillion time worse. 

I was diagnosed Dec '07 and am still learning to live with this.  At least I know what it is.  I am also on provigil which has made a big difference.  I am also on Effexor XR for the cataplexy.  If I stay on a consistent schedule then I am o.k.  I also have found that eating too much sugar is not good for me. 

I know what it is like to be so tired at night.  I don't know how you do it with working and caring for your family.  Don't beat yourself up about thinking you are not doing or giving your best to your students.  That will give you more stress that you need.  Just do the best you can.  When you get home from school, are you able to take a 15 minute nap to refresh yourself before you dive into the household responsibilities?  Are you able  to  have someone clean your house  for you so when you get home you can focus on your kids/husband without the stress of cleaning?  That would be worth the extra expense. 

I have a hard time keeping up on the cleaning in my home and I am not working.  I find that when I wake up I have tons of motivation/energy to clean, I make the lunches for the kids, make breakfast, drive the kids to school and by the time I get home, I have completely forgotten what my great cleaning plan was and I am ready for a nap.  It sucks.  I sometimes feel like I am sleeping my life away.  The part that really sucks is that even being on meds., it does not take away the symptoms.  I find my husband doesn't quite get that.  He will sometimes make comments to me about "did I forget to take my meds", and I have to remind him that my meds make my life much better than before, but it does not make me "normal". 

Laurie, I agree with being frustrated with people that don't get N or even make an attempt to understand.  I don't get why Dr. Phil and Oprah don't have a show about N.  They could help so many people understand what we go through and also probably help others be diagnosed 'cause they can't figure out what is wrong with them.  I have e-mailed Dr. Phil and his wife Robin to consider this as a topic for his show. 

Well, I need to move on to a project before I completely fade.

Hope to chat soon.

Laurie - posted on 03/19/2009

Vanessa, I completely relate to what you are saying. When I "hit my wall" (as I refer to it) I am done, finished, wiped out. Do you have this? People just don't get it. And, of course, I have no control over when or where it will be when I get to that point. It can be 10 minutes after I get out of bed...then I hear, "How can you be tired? You just got up!". Or if we are out somewhere I hear, "You knew we had this planned, you should have rested so you wouldn't be tired now.". They don't seem to believe that resting beforehand would not have made any difference. Sorry, I seem to be rambling. I just get so frustrated because it seems to me that people don't even make any attempt to understand N. or what it is like to live with it. I hope to hear back from you.