Hsolovino

Unusual narcolepsy symptoms.

14 posts in this topic

Hey everyone. I just found this sight and I'm very excited to get some feedback. My 16 yr old daughter was just diagnosed with n/wo/c about a yr ago. She had a really tough school yr her freshman yr and as a sophmore this yr it's getting better. My question is, how is everyone dealing with the lack of wanting to do anything? She is on modafinil in the am and a dose of adderall in the afternoon. She has no want to go anywhere or do anything. Is this normal for other n. Any help would be appreciated.

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Hsolovino

What are the dosages of the modafinil and adderall, Starting dose of modafinil generally around 200 mg, adderall differs but generally 10-20 mg

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She takes 2 200mg modafinil in the morn and 1 10mg adderall. She just started the adderall again after having a not great reaction to higher doses. 

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Hsolvino

400mg of modafinil is actually quite a bit, how is she sleeping at night? is she restless, up several times throughout the night, leg movements, nightmares etc. How were the results of her overnight sleep study what did the sleep architecture look like? Has she followed up with her sleep physician lately and has he addressed the possibility of different medication. 

How are the sleep and wake times does she get up at the same time every day, go to sleep at the same time every night? 

Generally speaking many narcoleptics have severely fragmented sleep and this needs addressed as well as the daytime sleepiness. 

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Ok let me try to hit all those questions. She has sleep apnea as well and is on a cpap machine so that has helped her sleep some. She has her nights where she can't sleep but most of the time it's a little restless. Going to bed and waking up are pretty consistent. 10 pm or so and awake at 600 am for school. Her sleep study revealed rem sleep in around 5 min. She sees her sleep doc several times. Tried Ritalin and adderall. Her body does not tolerate them. Went to modafinil and increased it to 2 after still falling asleep in school. That's better but just added a small dose of adderall in the afternoon to help stay awake. The total lake of motivation is heartbreaking for me right now. I'm so lost as a mom. 

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Hsolovino

Has her data been downloaded from her CPAP? what did it show? Has her sleep Doc mentioned Nuvigil? Is there any evidence of cataplexy, even minor ones (weakness, facial droop, eyelid droop, microsleep episodes throughout the day?  It is very difficult especially for a parent to watch their children go through this, I would suggest a support group also if there is one in your area.

Please don't get discouraged it will get better.

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Her sleep doc said they were very happy with her cpap results. She shakes but as she calls it on the inside. She's fallen down the bleachers and severely sprained her ankle but the doc hasn't wanted to call it cataplexy. I'm worried it might be. She's only taken those 3 meds so far. She still falls asleep in school at times. Where would I find a support group? I would love to take her to some. Thanks for the encouragement. There is no giving up when it concerns our kids. We must fight on. !!

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Unless things have changed, there's a lot of disagreement in the medical community on whether partial cataplexy can exist. I tend to be a believer, because I've talked to several people with full-on confirmed cataplexy that also report occasional episodes of partial cataplexy. This might be a bit tough on your daughter, but perhaps when she is off from school, you guys could do a week or so where she deliberately limits her sleep to induce sleep deprivation and see if you can get a full episode to happen that way perhaps by startling her or something? I hate encouraging people to game the system, but unfortunately, the system often has to be gamed to see any results. Hope you guys are able to find a treatment and support group that work. I can't even imagine having N as a teenager. I sometimes feel lucky that life waited to hit me with the incurable disease stick until after I graduated college.

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Hsolvino

I have seen these "minor" episodes in other teens who have been found to have Narcolepsy. As they enter their twenties I see the cataplexy get increasingly more severe. A good tool to have with you when you see the sleep doc next time would be a recording of one of these episodes. Perhaps your physician could suggest a support group near you, if not Hey a good time to start one right.

Best of luck

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Oh my! I wouldn't even know where to begin to start a support group. I am absolutely overwhelmed with everything going on in our family right now. Have you heard of people with narcolepsy qualifying for ssi?

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Hsolovino

Yes persons with Narcolepsy do qualify for SSI, be aware it not an easy or simple process and may drag on for years, at least in my experience, that being said I know a great many narcoleptics who function very well on a daily basis, and have held a job for 20 years. This of course is all dependent on how understanding the employer is. 

Should you choose the option of SSI get a good attorney and be prepared for a long arduous task.

Best of luck

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Hsolovino,

I just joined this group so I am going to go back a few posts in this conversation, I hope thats ok.  

First off, its great that you were able to identify narcolepsy this early in your daughters life.  I live in Ontario and my sleep specialist says that it is common for Dr.'s to assume all sorts of things other than a sleep issue when dealing with Narcoleptic symptoms. I know I personally was medicated for depression for a while before we were able to get a narcolepsy diagnosis.  This wreaked havoc in my life in so many ways... especially with the "not wanting to do anything".  That is normal when you are essentially exhausted all the time. So while right now it is hard to figure out how to manage your daughters symptoms, you have saved her years of feeling as if she were 'crazy' and that her symptoms were all in her head.... or worse.  You should feel happy about that part of things :)

I too am on the highest dosage of Modafinil that you can take (400mg 2x daily).  I am not a dr. so please don't take this as medical advice, BUT I will tell you my experience.  

I have figured out that the TIMING of my meds makes all the difference.  I can even drop to 200mg 2x a day on weekends or if I am on vacation (not needing to work).  What I noticed in your posts is that your daughter is taking her Modafinil 1x per day.  I do not know anything about adderal. For me (literally - if I were to take modafinil 1x per day) that is almost the same as my not taking it at all.  From my understanding, Modafinil's half-life doesn't lend itself to a single dose for a full day (hence the Adderal, but maybe talk to your dr about taking modafinil in the afternoon).  Also, if I am even 20 minutes  late in taking my afternoon Modafinil, I am useless for the rest of the day.  

I found out recently that each brand of modafinil, even at the same 'dose', ie. 200mg, can vary 10%-20% in the active ingredients level.  That was super fun to discover! LOL! (sacasm)....So, for example, there is one brand, TEVA, that I take at 7am, then need my second dose no later than 11am to get me through the day.  Another brand, MAR (?) - (which I think may be stronger) I take my first dose at 7am and my second between 12 and 1pm and that will get me through my day.  

It has taken me a really long time to work out the differences, and I am lucky to have had great pharmacists to help me work on the doseages and my timing.... BUT if I am late on my second dose, or if I miss it completely.... I am back to behaving and feeling as if I am totally un-medicated.  Its embarassing, frustrating and now that I am more finely tuned to my condition, I can literally feel when I am getting to the time for my next dose.

I have also found that when I am able to manage my wakefulness, my cataplexic symptoms diminish.  I do have a prescription specifically for cataplexy but I do not take it right now, and won't unless my symptoms worsen.

I also want to confirm what NatDoc said about quality of life and ability to work.  I am 38 years old, I have 4 teenagers, a husband, a dog and a career, currently at a Director level in Enterprise Sales - this means I do a lot of driving and meetings and events and complex negotiations.... etc. essentially, I have very little down time and I am more than able to keep up with all of those demands now that I am properly medicated.  Will I need to take meds for the rest of my life? Yes.  But other than that, my life could not be more normal.  I made it through highschool, and university all prior to diagnosis, so your daughter is in a much better position than I was.  

Increased physical activity helps too!  Swimming, walking, running, playing sports, riding horses... anything to get moving will make a huge difference.  I think this is the only thing that helped me survive school, since I was undiagnosed.

In the end, It's just a matter of working with her and the drs to figure out what works for HER.  I think all of us in this community have different routines, different dosing requirements and are even on different medications.... it will take a bit of time, but with some patience and modified habits I am confident that she will live as a normal teenager and a normal adult.

I'm happy to answer any questions that you have about how I worked through this - if you have any at all.  Here are some sites I found that may help you and your daughter - not the typical "definition type sites that you may know already....

http://project-sleep.com/resources-for-narcolepsy/   http://www.falling-asleep.com/diary-of-a-teenage-narcoleptic/   http://www.experienceproject.com/stories/Have-Narcolepsy/1409735  

 

 

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I take 2 200 mg of the brand name provigil, I take one in an and other early afternoon, I also supplement with Ritalin when needed. Such as watching a movie, driving home from a friends. Etc the Ritalin only lasts an hour or two and I don't like how it "crashes". I am not anti generic medication, but I tried modafinil for at least six weeks and could not hardly function so I switched back to provigil. As for your daughter, maybe spreading out the 2 doses a bit. Even a couple hours? would help? I have had a few things happen that make me wonder about cataplexy but not a full blown loss of all muscle tone. I have a horrible time waking up, and that's what I hate the most. As a single mom, it's not easy getting them up and to school on time when you can't wake up. 

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Well generics are only required to be within 15% of what they say they are. And you can guess which direction they tend to error in, so your 200 mg modafinil is prolly 170mg and 30 mg of sawdust

 

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