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Unsure How Meds Should Work


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#1 ProfessionalSleeper

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Posted 12 September 2013 - 09:47 PM

Hello,

I'm new to actually posting on the forum but I have been on reading topics for over a year now. I was diagnosed with N in May 2012 and was put on Nuvigil. It seemed to work ok but then my insurance said it wasn't going to cover Nuvigil since I had never taken Adderall or Provigil. My doctor prescribed me Provigil which did absolutely nothing. When I was switched back to Nuvigil it no longer worked as well even when it was bumped up to 250mg. My doctor then switched me to 10mg of Ritalin (he's extreme anti-Adderall) twice a day. Again, nothing. Now I'm taking Concerta 36mg. According to my doctor, it's working since it's keeping my brain "awake" and I can't take naps when I take it. My problem is, I still feel the same. The only difference is that I can't take a nap. Since I'm a stay at home mom right now I often choose not to take my medicine because I find it extremely frustrating to have the opportunity to take a nap and feel tired but not able to sleep. My doctor says none of the medications are going to help with my energy. Is this true? If so, then why bother taking medicine if I'm just going to be a zombie anyway. I've tried searching for this specific problem but I can't find answers. Also, my doctor keeps telling me to exercise and I'll feel better but I can barely go out on the playground with my 2yr old without feeling like I'm about to collapse from exhaustion. Any advice or opinions or anything would be greatly appreciated!

 

Thank You!



#2 exanimo

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Posted 13 September 2013 - 12:12 AM

Medications for Narcolepsy are meant to improve our symptoms; nuvigil/Provigil, adderal, ritalin, etc are supposed to make it so that we are not constantly tired- not falling asleep during inactivities like meetings or lectures as often. They cannot make our sleepiness go away - and most people find that the medications only really "take the edge off". What I mean by that is that we may still be tired, but it's not severe to a point where we are going in and out of microsleeps.

These medications work best when paired with lifestyle changes, such as a strict sleep schedule, diet changes and scheduled naps. These obviously vary from person to person, and sometimes it takes quite a bit to find what works. Medications often take time as well - finding the best one or combinations and such.

For me, the sleepiness is worst when I am inactive - such as in lectures, during a movie, or sometimes driving. I am on 250 mg of Nuvigil and it isn't really a significant change. Not one that I noticed right away. But I did find that I was napping less, and not falling asleep during classes or work as often either. I rarely have trouble driving now and am able to stay awake for most movies. But I still experience periods throughout the day where I just feel tired - like my brain is in a fog and I can't think properly. These usually go away either with a nap or with time. I try to keep myself moving or keep my brain active - so during class I might get up to walk around or take notes so that I'm not sitting idle, where I am much more likely to start falling asleep.

I also try to go to bed at a decent time and wake up at a decent time as well. Furthermore, I've found that taking my nuvigil with food is counterproductive. I eat either an hour before or after taking it to avoid an upset stomach. I've also found that starch, sugar or some gluten can make me more tired later in the day so I try to avoid most of those until dinner.

And you should remember that your doctor is there to help you- and if his unwilling to listen to your input on your treatment and medications, then he is not doing his job. You need someone who is willing to work with you, even if that means going outside of his comfort zone. Many medications like ritalin are likely to become ineffective - the body builds up a tolerance. This means the medication either needs to be increased, replaced or skipped for a few days (medication holiday). Unfortunately so many doctors are afraid of their patients becoming dependent that they may refuse to do one or all of those. Which is ridiculous because we need them to function - and increasing it is not because we want to feel good - but because we need it to function like a normal human being!!

Because you are a stay at home mom- I think it sounds like you remain in such a routine - that you may be experiencing the tiredness at such a level because you are not out and about and exposed to frequent mental and social stimulation. This is not to make you feel bad - I have nothing against stay at home moms. But I do believe it can limit a person in this aspect especially with narcolepsy because these inactive times are going to increase our tiredness. It reminds me of depression a bit - how someone can spend so much of their time at home doing little to nothing, yet remain so tired as if all of their energy is being sucked away. (Again - not that you aren't doing anything! Just that energy needs to have an outlet as well so that we get it replenished more frequently. )

Sorry this is kind of all over - hopefully some of it made sense!! Good luck :)

#3 oldgator

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Posted 13 September 2013 - 08:53 PM

I'm newly diagnosed so I don't know how much help I can be but I totally relate about young kids. I have to send my 3 yr old to daycare because I can't actually stay awake long enough to be able to take care of him. So far with medications I have found that they do just kind of take the edge off but that desire and sometimes need to nap/sleep is always there. For the past couple years nap time meant my nap time too so I can relate to that. I have taken concerta for years (for ADD though) and it does nothing to keep me awake. As you said, it keeps my brain focused and awake so I can't sleep but that's even more annoying for me. I'm taking Provigil 400mg but I think I'm going to ask to switch to Nuvigul just because maybe it will actually work. I just started Xyrem but I'm not sure if it will make a difference since the EDS is my main problem. Good luck finding a medication to take the edge off.



#4 Chemist

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Posted 14 September 2013 - 12:58 AM

If the dosage was kept the same when you switched from Nuvigil to Provigil it's not surprising that it didn't have any effect because Nuvigil has more potency than Provigil per milligram. Similarly, Ritalin affects only dopamine reuptake whereas Nuvigil/Provigil act on several neurotransmitters. You may have needed a larger dosage to have some impact, or it may have simply not worked for you at all regardless of dosage. I know Ritalin did absolutely nothing for me and when experimenting with higher doses I did find a high dose where I got some effect, but it was just stomach pain without any stimulant effect.

 

If you've gone on to try Provigil/Ritalin/Concerta and they aren't effective, see if you can get back on Nuvigil now.

 

You're absolutely correct in that there's no point to being awake if you still don't have enough energy to function. If you're telling your doctor "Hey, all this medication does is prevent me from resting but still leaves me with practically no cognitive/physical energy to be productive." and his response is "Excellent! It's working!" then he/she is an idiot and/or likely just terrified of prescribing stimulants to people. Find a doctor who isn't scared of Adderall/Vyvanse and try those if you can't get back on Nuvigil. I take Adderall for my EDS and it's mildly effective for it. I've had zero issues with cravings, withdrawals, or anything else that would indicate habit formation, addiction, or dependency. Just be responsible.



#5 dozeydaisy

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Posted 14 September 2013 - 10:05 AM

I've had narcolepsy (diagnosed) for about 2 years now and my medication is still not sorted; it could be years until it is fully sorted. 

I take provigil, But taking 200mg in the morning was doing nothing for me, so I took a higher dosage and that caused some serious emotional issues. So me and my doctor decided that I will take 100mg in the morning and 100mg about 2pm. It has helped considerably breaking it up because its almost like a little boost as I work full time. It does only take the edge off and I don't think any medication will keep me awake all day but like the others have said on here- 

 

Don't be scared to try different things, like different kinds of exercise around the house or out and about because exercise stimulates the brain. I cut out fizzy drinks and any kind of caffeine, minus a cup of tea now and then. Its not the most exciting thing but it did wonders for me. I'm still working out what will and won't help but 5 minute power naps with help from friends and an alarm on my phone really do a lot for me as it stops me having to take those hour long naps. 

 

Ofcourse everyone is different but i hope some of this might help. I refused to take tablets when I was first diagnosed believing I would just become dependant on them and that scared me, but its truly better with them because before I took them I couldn't even function day to day without passing out. I like provigil and its strong enough for me but if its not working keep pushing your doctor to change or up the dosage; perhaps even splitting it like I did. It will take a while but you will find something that works, just keep your chin up ^_^



#6 ProfessionalSleeper

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Posted 15 September 2013 - 12:01 AM

Thanks for all the advice! I should've mentioned when I first started the topic that Nuvigil caused me to hallucinate and that before I took it I was prone to them anyway, although at the time I was unaware that I was experiencing hallucinations. I don't know if Provigil will do the same though, but I've read that Provigil and Nuvigil are similar. My husband is in the military and we just recently moved to another state. I haven't gotten a referral for a sleep specialist yet though. The thing that was upsetting with my last doctor was that he did seem too scared to prescribed stimulants. I had read where some people took higher doses of Ritalin and did well on it. Before I learned that Nuvigil could cause hallucinations my primary doctor put my on Abilify and I felt pretty good on it. I was able to accomplish normal daily tasks without feeling like collapsing from exhaustion. Unfortunately, the Abilify had some serious side effects so I had to stop taking it. Plus, it's not for treating Narcolepsy. But I read that some meds approved for Narcolepsy treatment are in a similar classification as Abilify, Adderall being the one I'm most familiar with. So I'm wondering if Adderall would work better for me or if I should just try and see if a doctor will try a higher dose of Ritalin. (I have ADD as well and 10mg of Ritalin worked for that.) I was also wondering, if you take a stimulant for Narcolepsy then is it expected to work for ADD as well or would you have to take 2 different stimulants to treat them separately? My previous doctors didn't want to start treating me for ADD until I was on steady meds for Narcolepsy and then re-evaluated.