Emotions

no i haven't tried either of them

I understand, because I know nobody understands how hard it is for me to make it through a single work day, everyday. I was diagnosed with cataplexy and narcolepsy and sleep apnea and extreme daytime sleepiness in March and the Dr. Will not let me drive still to today. He keeps playing with my meds. The Xyrem helps a lot with the Cataplexy, the Ritalin LA helps by giving me plenty of energy as long as I am up moving, but as soon as I sit down to do paperwork I'm asleep. I'm currently in the military awaiting on them to figure out what is going to happen to my career now since I have all this going on. It is rather depressing not knowing what will happen and everyone thinking your just lazy or faking it. It's hard to keep going sometimes.

I was diagnosed in March too…seems like everything I worked for has just slipped away.

Chin up Chick :) thoughts with u from down under. I know it won't make u feel any better but your story helped me out. Was feeling sorry for myself as max load of drugs just keeping me on track and have just found out husband going to do 6 month tour to Afghanistan in August leaving me and 3 kids (aged 2, 4 and 7). Then got my first essay and grade w reflected the fact I am narco and fall asleep when reading or memory goes, either way have to read everything 2 times at least. So time consuming, and time is what I lack.

But I only have to pay $15 a month for drugs and all doctor visits are $20 and specialist is free. That is without insurance. Public health system, has its probs but it is cheap.

Have to admit my only routine is that there is no routine. I gave up long ago. I have a computer and a DVD player as a back up babysitter and go with the flow. Easier said than done sometimes. I have given up on being the mother I dreamed of being. A matter that has caused me much sadness and depression.

I do what I have to do to keep safe and happy and anything else is a bonus. Keep smiling

I like your attitude. Your story makes me feel sad and better too. Lol. Come to Texas for a month. We can sleep and our kids (12 and 4) boys can all play. :) l feel the same way about being a mom. I keep hearing that it will get better, lower your stress, get a better schedule, it coud be worse, love ya. Thanks. :) no clue what to do. I'm so sorry about your hubby. I know that has to be extremely difficult.

Yeah I too keep thinking it will get 'easier' in that kids will have more understanding and be able to do more for and by themselves. However, I want to be an involved Mum, not at home asleep! Right now i have to stay alert as much as poss as my daughter (the 2 year old) is a nightmare. She smashed the tv (pushed it onto a speaker from stand cos she did not want her brothers watching it and screen disintegrated), put sugar on floor and swam in it, decorated kitchen in yoghurt and got small pots of house paint open and poured on patio all in 48 hours!

At the moment I try and do something semi active in morning - if I am active less tendency to have attack. Then quiet time between lunch and school pick up. Then it's the bit I find hardest, and particularly unpredictable 3pm to bedtime. I have started taking an extra dose of meds for this bit. My drugs seem to work for 2 to 2.5 hours starting about 1 hour after taking.

All fun and games. Trying to set "good example" in case any of kids get it. Keep thinking that at least the narco will not kill me directly and I have 3 relatively healthy kids. Life could be worse.

But oh sooooooo FRUSTRATING

Your 2 year old sounds so much like my son. He is 3, but about to turn four. Older brother is an angel
The youngest one- sharpie marker to the walls and furniture, dog food in the toilet (making soup), rearranging all the clothes in his drawers- u know that can't be good, broke the bottom glass of the tv stand and blamed it in big brother. Geez!!!! I have a hard time waking up. Ugh. Once my meds kick in and I'm awake it's okay. Then trying to get all 3 of us out the door and where we need to go can sometimes prove a hassle. Especially, if we are running late- because I woke up and couldn't move, or fell asleep putting my makeup on. I have a crash around 4-430. Right when I need to be with MY kids- doing homework, supper, laundry, bath time , hearing about their days. Etc. it's rough and I totally I totally understand. Their dad, my ex after 14 years still thinks its a hoax. Hasn't read anything I gave him to read- I even highlighted!!! My current guy is amazing and supportive, but isn't here all the time- of course. Family- frustrating. Friends- gone. Sometimes- I get tired of my own story, but it's so nice to have someone understand. I hope you have a wonderful day. I know you are truly an amazing mother.

well i might have trouble sleeping at night because when the alarm clock rings i look at the clock then i lay back in bed just trying to stay up in the bed
in the morning i usually wake up at five o clock in the morning monday through friday for school.
what can i do?
help me please thank you-tori

Not so great. And then…okay. Not a bad day today. Hit the ground yesterday- apparently I dozed off in the middle of a convo- then hopped up to go to the restroom- didn't know I'd been asleep for 15 minutes. Boom!!! Carpet burn to the knee and a really sore wrist, small bump on my head. Could of been much worse. Hoping for a good day tomorrow. I really want to take my boys to the zoo. ;) 19.5 days of school left. And I'm fighting for my job. It's going pretty well I think. Looks pretty bad when an employee tells you the have been diagnosed with narcolepsy and you write them an evaluation dated the next day letting them go- but hold it for a month and have no support for low ratings- really not cool!!! Anyway, how are u???

You are in my positive thoughts and prayers…I can tell life is so hard for you right now!
i wanted to ask - what medication regime are you currently using? I know that sometimes the trial and error period of finding the best meds regime can be excruciating and wear greatly on patience …
As you know, there are meds for the cataplexy and also meds for treating the daytime sleepiness…stims like provigil, nuvigil, ritilin…
Are you working closely with your doctor to find what works best for you?
A word of encouragement - I have many friends with N who now work full time after finding the best meds regime for them…unfortunately that regime is very individual…and sometimes you have to try several, and go through the dosage changes to find what works for you.

Hey Tracy- I'm trying!!! Obviously lots of stress in my life- which according to the doc- brought about the "big onset". I've had all the symptoms for a very long time. Childhood. But, only severely impaired my life- so I thought- during certain times. Of course- maybe I wouldn't have felt crazy sometimes if I'd known I was walking around half asleep. ;) currently- 200 mg Provigil and 5 mg Ritalin when I wake up (545-6 am)Then another 200 mg of Provigil around 2. I did have 5 mg of Ritalin at noon and another later in the day. We cut out the other 2 Ritalin. So- come 6- (time for supper, baths, homework, laundry, etc) somedays are pretty tough. Im for sure done now by 730 and it's difficult. My 11 year old and 3 year old Aren't done with me yet!! Single parenting is hard. Now- with the added stress of no job come end of May,job search, applying everywhere I can for aid, loss of friends, family that just doesn't quite get it, and even struggling to accept myself- officially known since March 19th, unofficial Feb 2-sick and struggling for several years and wrongly diagnosed and medicated- its not helping! Trying to change and modify diet, schedule, etc is hard enough as it is- much less at the moment. I ha to drive over 15 minutes today- I was fine on the way there this morning. Not on the way back. I could have used the extra Ritalin, but I don't have any to take and I have tried a few mornings without it- I need that extra jump start. I sleep awful. Nightmares, wake up, RLS, fun fun. I take 1 mg of Klonopin at night. It helps sometimes. I've determined that anger, sadness, worry- are triggers. Happy and laughter are great unless I'm REALLY excited! Doc wants to try xyrem this summer. My pharmacist has never heard of it. From what I can tell it has to be ordered differently. I am working as close as I can with my doc- but we have reached his level of expertise. Seen 4 neurologists- all who I no longer see- one of them told me there was no way I could be fatigued because I was so animated. Of course I was- doc had me on Phentermine for fatigue. Looking for another neuro now, but can't find one that wants me. My doc wants me to see a sleep specialist somewhere. There are two here. One doesn't take my insurance an the other is great, but has never had a patient with narc. So…I feel like once I have some processing time, can get meds right, ease up the stress, change some things- ill have an improvement. Right now- it seems that things are getting worse. More stress equals more sleep attacks and cataplexy. Doc doesn't want me to have the other Ritalin or anything- thinks that everything will be okay- i have no problem with not having that many stimulants- but I think when we just started and with all this- its a bit more helpful to be awake. Or I'm not going to be able to change anything. I'd like the cataplexy to ease up too. The shakes, my left eye droops, full body, arms, feeling like I'm walking though mud- a d dang the soreness. Sleep would be nice. Good sleep…:)

Xyrem is a miracle drug for Cataplexy, well for me it has been. Since taking it my cataplexy has eased up and I very rarely have any episodes. The dic keeps upping the dosage to try to help the sleep attacks during the day but no success and I am now at the max dosage of Xyrem. But on the bright side the cataplexy is better, which was the worst for me.

Have you tried Provigil (Modafinil) or Nuvigil?

I hear ya! Good to hear you are looking for a sleep specialist who specializes in or at least has N experience. Its not unusual for pharmacists not to have heard about Xyrem. its a scheduled drug and dispensed directly to you, usually federal express. I hope you have the same success with Xyrem that many of my friends have had. Its a liquid, given in 2 doses - one at bed time and another about 3-4 hours later. It is meant to regulate your sleep during the night to help ease up on daytime sleepiness and also many find it really helps with cataplexy.
Here is a link to a national list of acredited sleep labs
http://www.sleepcenters.org/
click on your state, then city - you might find it helpful to find a neuro in your area. all acredited sleep labs must have a board certified sleep doc at the helm. the sleep doctors are listed on this site.

oops, this posted before I finished what I wanted to say :) when looking for a new sleep doc, it can be helpful to call your local sleep labs, talk to the techs or lab managers and ask THEM who the best docs are in your area who treat narcoleptics. they are "in the know". then you can check to see if they are covered on your insurance plan.
keep posting and let us know how you are doing. you have friends and support here, thats for sure!
tracy

How are you holding up?

How are you doing the last few days???

I'm glad! I've felt like that before. Sometimes all you need is for someone to understand.

That made me feel a lot better. Thank you. Very much.

Day,
We all have days like that. The good news is that they do not last forever. Don't be hard on yourself. If this happened to a friend of yours, would you be this hard on them? You should try to have the same kind of compassion for yourself that you would have for someone else.

Be extra good to yourself today. Remember this sort of thing happens to everyone in different ways, for different reasons. You are obviously a good mother. Trust in that.

I hope you feel better soon!