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Nuvigil cataplexy

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#1 jareblake

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Posted 17 July 2013 - 08:01 PM

After many years and many more test I was diagnosed with N a little over a month ago.  I am still finding it hard to believe that I actually have Narcolepsy; I always thought that was for people who fell asleep mid sentence (which I guess can be true). Every time I convince myself I am just overreacting I quickly remember my MSLT said I fell asleep in less then 30 seconds in 4 of the 5 naps (even though I was sure I never fell asleep during any of the naps) and I had REM sleep in 3 of the 5. So, I'm coming to terms with it.  Even though I was somewhat glad to finally have a name for why I have been tired for the last 10 years of my life, I am pretty freaked out that this is my reality and it's not going to just go away.

My Dr. started me on 150mg of Nuvigil, the day I got the results of the MSLT, which has been a struggle.  Like most people I had awful headaches for the first few days but pushed through, hoping this would be the answer.  The headaches went away and for a few days I did seem to have more energy.  Slowly I began to notice, after the first couple of hours (sometimes longer), I started having more sleep attacks and cataplexy episodes.  The other day I went for a hike with some friends and when we got back and sat down for brunch I was so tired my eyes were crossing in the middle of eating and talking.  I had a cataplexy episode and nearly fell out of my chair.  I also noticed when I went for a run the other day I barely made it in the door before I was on the floor and I slept for about half an hour.  I thought these things would go away when I started Nuvigil. I started taking Ambien CR which has helped. I don't fall asleep and immediately wake up again and again when I take it, but I know it isn't a permanent solution. 

The biggest struggle for me is getting out of bed in the morning.  I usually get up 3 hours before I have to be anywhere so I can be alert enough to carry on a conversation.  I was really hoping the Nuvigil would help me wake up but it really hasn't.  I really don't think I could take a higher dose because it already makes me feel a little weird in the head.  Most of the time I feel like I'm detached from the world and I'm beginning to lose motivation and interest.  Sorry this is a little random, I have so many things going through my mind and so many questions it's hard to make sense of it sometimes.  I can't imagine being on this medication forever.  Does anyone know of anything that has helped to get out of bed in the morning?   I would appreciate any advice.  I'm already very thankful I found this network.

 



#2 sk8aplexy

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Posted 17 July 2013 - 10:05 PM

Oh man.  Your words/story sounds very familiar, here.   

At first it is a rough and tough thing to grasp (it was for me), it does also play into so many aspects of life, be it lifestyle and character plus more (it has for me).

It is a new thing to juggle, yet not exactly; in that subconsciously, unconsciously, and to some extent consciously it has been something already being juggled.

Each case is different in variable ways, as are each of the symptoms of the condition/disorder/disease for each one with it, and all the more complex is that the symptoms we each have can fluctuate in a manner of various degrees or ways, over time, even coming and going.

To follow that up, I'm gonna say something which maybe not many like to say, n/or hear, the medications work for some, and not for others. 

I'm one of the others. 

To put it bluntly and directly -> the benefits (which I did not have) did not outweigh the negative side effects; so I've gone down a path of lifestyle adjustments, which has definitely helped. 

Be careful and you do sound like you're paying attention, as best that you can.  Keep doing that, don't get defeated, stay strong. 

In time you'll find whatever works for you, trial and error is along the path.

There's a lot still to be understood, and there's so much misunderstanding, about the condition/disorder/disease but, there has been a lot also figured out. 

You are in the right place, where you can read others experiences/stories, along with find links to all sorts of information/articles/etc...

 

Motivation and interest is something I struggle with, as interacting with others is also hard for me, I feel what you've said. 

I try to reflect and also observe and/or contemplate, upon so much that is fascinating and am always thankful, regardless, because it helps me stay grounded as well as with my head up. 

 

As for advice on helping to get out of bed in the morning, all I can suggest is what works (typically) for me and that is first thing a shower, then a large cup of water, and a mile or three walk in the sun to buy a 16oz decaf (I know, I'm hooked, it's so good and does help me); that all tends to get me usually at least half way through the day..!  -(but I must also say or add, that there's a lot more involved that I must juggle all the time -sleep hygiene/routine, diet, minimizing stress/anxieties, exercise/s, staying stimulated, having a shoulder/ear now and then to lean on / or a place, like this, to vent.-)-

 

Hope things steady out, for you.



#3 jennel

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Posted 17 July 2013 - 11:15 PM

I never could find a way to get up before starting Xyrem. Like you I needed to awake many hours  before getting somewhere so that the three morning stimulants could take hold.   I'm new to this too and just sorta did a big whiny post feeling very sorry for myself cuz I just needed to vent somewhere. ;)

 

I hope we both find answers to our situations.  :unsure:



#4 DeathRabbit

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Posted 18 July 2013 - 12:20 AM

After many years and many more test I was diagnosed with N a little over a month ago.  I am still finding it hard to believe that I actually have Narcolepsy; I always thought that was for people who fell asleep mid sentence (which I guess can be true). Every time I convince myself I am just overreacting I quickly remember my MSLT said I fell asleep in less then 30 seconds in 4 of the 5 naps (even though I was sure I never fell asleep during any of the naps) and I had REM sleep in 3 of the 5. So, I'm coming to terms with it.  Even though I was somewhat glad to finally have a name for why I have been tired for the last 10 years of my life, I am pretty freaked out that this is my reality and it's not going to just go away.

My Dr. started me on 150mg of Nuvigil, the day I got the results of the MSLT, which has been a struggle.  Like most people I had awful headaches for the first few days but pushed through, hoping this would be the answer.  The headaches went away and for a few days I did seem to have more energy.  Slowly I began to notice, after the first couple of hours (sometimes longer), I started having more sleep attacks and cataplexy episodes.  The other day I went for a hike with some friends and when we got back and sat down for brunch I was so tired my eyes were crossing in the middle of eating and talking.  I had a cataplexy episode and nearly fell out of my chair.  I also noticed when I went for a run the other day I barely made it in the door before I was on the floor and I slept for about half an hour.  I thought these things would go away when I started Nuvigil. I started taking Ambien CR which has helped. I don't fall asleep and immediately wake up again and again when I take it, but I know it isn't a permanent solution. 

The biggest struggle for me is getting out of bed in the morning.  I usually get up 3 hours before I have to be anywhere so I can be alert enough to carry on a conversation.  I was really hoping the Nuvigil would help me wake up but it really hasn't.  I really don't think I could take a higher dose because it already makes me feel a little weird in the head.  Most of the time I feel like I'm detached from the world and I'm beginning to lose motivation and interest.  Sorry this is a little random, I have so many things going through my mind and so many questions it's hard to make sense of it sometimes.  I can't imagine being on this medication forever.  Does anyone know of anything that has helped to get out of bed in the morning?   I would appreciate any advice.  I'm already very thankful I found this network.

The Provigil and Nuvigil both gave me feelings of DPD as well. That *BEEP* is scary, although I think I may have jumped ship with the Nuvigil too soon. I still have a nearly filled bottle. Thinking about giving a shot again. After all, I already have headaches more days than not. How bad could it be? :o



#5 lkl

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Posted 18 July 2013 - 05:16 AM

Does anyone know of anything that has helped to get out of bed in the morning?   I would appreciate any advice.  I'm already very thankful I found this network.

I have found that setting an alarm 1 hour before I want to get up, and taking my stimulant medication then, and going back to sleep for an hour, helps me to get up, when the alarms goes off again an hour later. For me, trying to get up and get ready etc, before the stimulant had taken effect, seemed to use so much energy and mental effort, that even when the stimulant had started working, I still felt extra tired. I still have a bit of trouble getting up (and some days a lot of trouble), but doing this has certainly helped significantly.

 

Also if the sun is up before me, I usually leave the curtain open a bit before I go to bed, so that the sun can shine in, when I wake up. I thinks this helps too, as I have a harder time getting up, when it is dark outside.



#6 jareblake

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Posted 18 July 2013 - 09:53 PM

Thanks for your replies.  It is comforting to know there are people out there who actually know what I'm going through.  

I found out today my Dr is retiring at the end of this month. Typical!! As soon I I find someone who may offer a solution....Gone! Ugh



#7 exanimo

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Posted 19 July 2013 - 11:49 AM

Well one of the toughest things you find out after being diagnosed is that there is no cure. The stimulants are treatments, but they will not make the symptoms disappear. They will only improve those symptoms to a certain degree.

One thing that I have found to help improve the effectiveness of my Nuvigil (the only medication I take) is to avoid eating heavy meals th first half of the day. Still haven't narrowed it down to carbs or gluten or anything else, but if I have two pieces of toast for breakfast or cereal then I will feel tire by mid afternoon. If I have an omelet, I won't be. And sometimes I can even go the entire day without needing a nap. Granted - I will come home tired and be a little foggy, but can at least make it to bedtime. It has been studied that there is a correspondence to gluten intolerance with some PWNs- it has to do with being linked genetically. I briefly tried gluten free before my diagnosis but don't remember a significant decrease in my tiredness. But because of my recent dietary changes - think that maybe it is the culprit too.

And it's true that many people have problems with nuvigil or other drugs. I would stick with it a while longer and wait to see how it plays out after a while. I also have taken my nuvigil with my first alarm and find it easier to wake up after 15 or 20 mins. Medication holidays can also be helpful to delay and/or correct any tolerance to the medication that might appear. ( I did increase my nuvigil from 150 to 250 mg within about 6 months of my diagnosis.)

Are you on any medication for the cataplexy? Because nuvigil will not do anything to help with C.

Good luck!

#8 SteffaneGrace

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Posted 05 August 2013 - 11:13 AM

Welcome to the boards, Jare. 

 

We are all here because at one point or another, we were diagnosed with N. You are not alone :). I am a 30 year old female in a very similar situation as yours. I have been tired nearly all my life. Taken naps every chance I could. In my car, on any couch in a 50 ft radius, in my bed, on the floor. You get the idea. I just figured it was me. I mean, my sister, 9 years my senior, has always been tired too. It is what it is.

 

It was quite frightening when I was diagnosed. But at the same time, felt damn good to have a name for it. Something other than "you are just crazy". That's what my Borderline Personality Disorder diagnosis is for ;b

 

But I digress. Keep rocking the medications. As everyone has said on here, it's not a one-size-fits-all kind of deal. We all react differently. I have been on Xyrem for the past month and it is the only medication that has worked for me. I have Adderall as a stimulant. Well...I will be going back on Adderall soon anyway. 

 

You are who you are and you have been dealing with this for a long time. You just never had a name. You are still the same person :). And as far as the fogginess goes, a good share of us go through that. Especially with these medications. Give it time and make sure you are only feeling foggy and not feeling confused. If you start to not understand tasks that you understood perfectly before--say something to your doctor. Read some of the other posts on here about how others making it through "the fog". It may offer some insight. Heck, I am still working on figuring out a way to work through it. It is pretty new to me as well.

 

In any case, I hope you stay on here and keep chatting. We are all here for each other. And we all know, to a degree, what the other is feeling.



#9 sleepers

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Posted 24 August 2013 - 10:57 PM

I believe you should consider going to another doctor who will give you a prescription for Xyrem.  After all, you have cataplexy and this medication does help most people.  If you come to the NN meeting in Atlanta, make it a priority to  meet people who can help you locate a doctor who will take time to get you the medication you seem to need.  I took Ritalin for 20 years and an antidepressant for the cataplexy, but nothing really worked well for me for the cataplexy until Xyrem.   I don't have a problem getting up. Then I take 200 mg provigil which gets me through the day.  I used  to need several naps daily, but now I don't usually need a nap.   It is true that you can help yourself by eating well -- not much sugar -- and keeping to a schedule, trying to go to sleep and get up at the same time.  If you go on Xyrem, remember not to eat 3 hours before you take it to get the full effect.  And, after you take it, STAY in BED.  There have been a number of injuries, some serious, to people taking Xyrem who thought they were awake/alert enough to get up and walk around 15-20 minutes after taking it.  Don't take chances!  Good luck.

#10 supertired

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Posted 25 September 2013 - 08:38 AM

Jare, you're not alone.

 

I was dignosed in 2006 and I am just now coming to terms with it that my tiredness will never go away.

 

It's dissappointing to a major degree. in 1998 I woke up one morning and felt clear and refreshed.  then I relaized I had had a good nights sleep.

 

What a felling that was!!!!!  I have been chasing it ever since.

 

I hope you find a new doctor and everything works out for you.  I've already tried nuvigil and provigil and adderall.  I can sleep through all of them.

 

But we have to fight on and keep looking for answers.

 

good luck.



#11 kevers

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Posted 19 October 2013 - 05:11 PM

I believe you should consider going to another doctor who will give you a prescription for Xyrem.  After all, you have cataplexy and this medication does help most people.  If you come to the NN meeting in Atlanta, make it a priority to  meet people who can help you locate a doctor who will take time to get you the medication you seem to need.  I took Ritalin for 20 years and an antidepressant for the cataplexy, but nothing really worked well for me for the cataplexy until Xyrem.   I don't have a problem getting up. Then I take 200 mg provigil which gets me through the day.  I used  to need several naps daily, but now I don't usually need a nap.   It is true that you can help yourself by eating well -- not much sugar -- and keeping to a schedule, trying to go to sleep and get up at the same time.  If you go on Xyrem, remember not to eat 3 hours before you take it to get the full effect.  And, after you take it, STAY in BED.  There have been a number of injuries, some serious, to people taking Xyrem who thought they were awake/alert enough to get up and walk around 15-20 minutes after taking it.  Don't take chances!  Good luck.

 

Agree time to see another doc



#12 Sleepy Bird

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Posted 22 October 2013 - 04:27 PM

I am 60 and just diagnosed a year ago. I have been through a lot of what has already been discussed, so I will only address what I have experienced and found affective that has not been mentioned. I came across the MTV Narcolepsy video in which Julie Fain gained much improvement from a neuro-chiropractor. I had never heard of them. I googled them and found the website for the school they all trained at. Then I used the website's neuro-chiropractor finder to find the one closest to where I live. After about three months of twice a week visits for functional neurological exercises, I have made significant gains in my strength and energy. I know we are all different and what works for one person may not work for the next - but it is certainly worth trying - it involves no drugs or surgery, just physical and mental exercises to stimulate certain areas of the brain. Best of luck to you.
Richard

#13 steaks

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Posted 25 October 2013 - 11:17 PM

I have been where you are at most of my life.  I've found that drinking a liter of water on waking, and then juicing 10 ounces of green leafy juice, fresh squeezed (No fruit), for a couple of months takes off about 20-30% of the edge.  You have to have patience though, and have the will power to not cut corners.  Most people who juice will never have this experience because:

 

#1.  They are not consistent

#2.  They cut corners, by adding fruit, "Guava", "Evaporated Cane Juice'



#14 miren

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Posted 26 October 2013 - 12:10 AM

I have found that setting an alarm 1 hour before I want to get up, and taking my stimulant medication then, and going back to sleep for an hour, helps me to get up, when the alarms goes off again an hour later.

^^ This.  Though my more recent plan has been to just wake up when my alarm goes off, take my pill, and play on my smartphone (check email, play pointless games, read the news) for the first 20 minutes.  Something about a subtle glow wakes me up much better than bright overhead lights.  (Lights that are too bright actually seem to trigger me going to sleep...)

 

Keep working with your doctor on the meds.  I began on Provigil and had no side effects until it started interacting with my birth control at the time.  Switched to methylphenidate (Ritalin) and was jittery as hell and falling asleep 2 hours later for a couple days.  Switched a to a low dose combination of Ritalin LA (long-acting, one upon waking and one ~6 hours later) and regular Ritalin (about 5 hours before bedtime, plus additional as needed) and have been on that for 4-5 years.

 

Find what works for you - it's out there; a med with less side effects may not eliminate all your N symptoms, but if it reduces them without any ill effects then it's worth it.  Cut out caffeine of all sorts until you adjust to any medication, or you will skew how the RX really affects you.  Get enough sleep: Just because friends/family can get by on 7, 6, or 5 hours doesn't mean that's right for your body.  I used to need upwards of 9; I'm excited that I can usually tolerate only 8 now.  It's better to spend an extra hour in bed than to waste the entire day feeling lethargic.

 

Your sleep test sounds similar to mine : )  Though by the 5th nap (the only one I didn't fall asleep) I was literally pinching myself to stay awake because I wanted desperately to go home...probably not the best for accurate results...but I thought they weren't going to find anything from the tests, anyway.  Best of luck to you...it only took me 2-3 years from my first symptoms to finally having a doctor that asked the right questions, ordered a sleep study, and got me diagnosed.  I can't imagine living with it for a decade - but better late than never!







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