Having a hard time. (Rant)

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This topic contains 30 replies, has 12 voices, and was last updated by Sleepy RBD 3 months ago. This post has been viewed 1367 times

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    Participant @naychan07

    I hope your appts go/went well & you’re doing a bit better! I’m adding a rant to your rant – I hope that’s okay.
    I am in the same boat with you right now. I’m on 250mg nuvigil & 30mg adderall xr & it feels like I’m not even taking my meds every morning. I can’t think straight or speak coherently at work, if I blink for just a nanosecond too long driving I want to fall asleep, I don’t have the energy to help with housework or play with my little boy, or spend alone time with my husband.
    I hate it when people try to empathize with you about their tiredness too. Like i get it theyre trying to make you feel better, but it doesn’t help at all. It just adds to the frustration that “no one” understands what’s going on with you.
    & then it sucks feeling guilty & like crap because you cant keep up with everything like you used to. Omg the “realizing you can’t do as much now as you used to” thing is killing me too. I resonate with your post so much & it feels good to know we’re not alone.

    Keymaster @jasonm

    @Naychan07 From my understanding, taking Nuvigil and adderall simultaneously is counterproductive. Nuvigil is an atypical DAT inhibitor and amphetamines like adderall reverse DAT. An overly simplistic analogy is if there was a river of dopamine/norepinephrine (the stuff that Nuvigil and Adderall increase), Nuvigil essentially dams up the river causing dopamine and norepinephrine to increase promoting wakefulness. Adderall, on the other hand, actually reverses the flow of the river, producing a much larger increase in dopamine and norepinephrine than Nuvigil.

    If Nuvigil is in your system and damming up the river, however, it prevents amphetamines from reversing DAT so the amphetamines end up not doing much. It’d be better to take one or the other but not both. I’d suggest asking your doctor about either changing medications to something like Focalin (dexmethylphenidate) or taking a higher dose of an amphetamine (60mg is the max per day).

    I can link the research showing Nuvigil has this effect on amphetamines if you like. I was skeptical at first but the same thing happens to me if I take both.


    Participant @haven

    @Jason — Question: When you say is counterproductive to take Nuvigil and Adderall at the same time, can I assume you mean at the same time of day? Just wondering because I currently take Nuvigil in the a.m., then Adderall at 3:00 p.m. to get through until bedtime.


    Participant @naychan07

    That makes sense actually. I have a dr appt Tuesday so hopefully we can straighten it all out.

    Keymaster @jasonm

    @haven Well given that Nuvigil has a half life of 15 hours or so, even if you take it in the morning, there’s still about half of it in your system even when you go to sleep. There is research suggesting that it paradoxically diminishes the stimulant effects of amphetamines like Adderall, rather than enhancing it. That doesn’t mean Adderall won’t have any stimulant effect taken later in the day, just that it might not be as effective compared to as if the Nuvigil wasn’t in you at all. Ultimately, whatever works is fine.

    Unfortunately there’s not a ton of fantastic research on it because there’s not much incentive to do it. But if your current medication scheme isn’t working, it’s worth trying something else. Personally, if I were going to combine stimulants, I’d do something like Nuvigil in the morning and then methylphenidate (ritalin) or better yet Focalin.

    Ultimately it’s a matter of figuring out what works for you and that involves trial and error. My sleep doctor doesn’t like combining stimulants at all because he worries about becoming tolerant to both medications and having no where to turn in that event.

    Participant @purpley

    Actually, the combination of Nuvigil and Adderall worked great for me, though I was taking Nuvigil twice daily; it didn’t work for me as a once-daily medication. Just one problem: Nuvigil and Provigil can both cause tardive dyskinesia, involuntary mouth movements, which is more typically seen as a side effect of antipsychotic medications. When you take a medication that can cause TD and you’re also taking Adderall or a stimulant, the risk of TD is increased. I had no idea that the ‘vigils could cause TD and it took me entirely by surprise. I’m VERY happy to report that the symptom is almost entirely resolved now that I no longer take a ‘vigil, because it can be a PERMANENT side effect.

    So buyer beware. Don’t take too high a dose of the ‘vigils like I did (with my doctor’s approval, mind you), especially if you’re also taking a stimulant.

    @jasonm, will you link the research, please? Very curious.

    "Even a soul submerged in sleep is hard at work and helps make something of the world."
    ― Heraclitus, Fragments
    Keymaster @jasonm

    @purpley The theory is that atypical DAT inhibition (ie modafinil) attenuate the effects of amphetamines on locomotion. There’s also research that suggests that modafinil reduces the neurotoxicity of methamphetamine, possibly by reducing the increase in dopamine.

    I’m currently taking a med holiday so I’ll post some additional stuff once I can think again! I’ve read some reports regarding trazodone causing TD which makes some sense from what we know regarding its pharmacology. Trazodone and second generation antipsychotics both act potently as 5-ht2a antagonists.

    In the meantime, although this is on rats, see https://www.sciencedirect.com/science/article/pii/S0028390817305956


    Participant @naychan07

    Hello! Thought i would finally give an update since I’m thinking about it (of course i keep forgetting). I stopped the adderall & started concerta. I was put on the 36mg for 3 months & i just started 54mg. I’m feeling a lot better, but still struggling with accepting i can’t do all i used to – especially with a 21-month old toddler who is go-go-go all day every day. 😱 lol.


    Participant @cnlmustard

    NayChan07, no you can’t do all you used to, and stinks to the point of depressing, to probably everyone reading this and knows the pain of acceptance.
    In 2005 I had just earned my 4th degree Taekwondo black belt, 15 years of training.
    Toward the end I wondered why I couldn’t go more than two rounds sparring, without sitting slently on he floor. Not breathing hard, just zoned out of it. So aerobic activity became a new trigger. So much for that, but doctors said I’m physically ten years younger than I am, so not all for naught.
    Someone mentioned gabapentin in this post. If your insurance will let you, Horizant (a tricked out form of gabapentin) has done wonders for me. I would be disabled without it, even considering the 70mg of Ritalin and 30mg Adderal I’m on daily.
    Like gabapentin, the label says it’s maxed effect is at 600/day, but THAT’s talking restless legs. I’m up to 1,200mg/day, because any light will throw me into seasick cataplexy otherwise. Yes, it does make you unstable. But ear doctors routinely give Valium for balence control, and my 30mg/day of that almost gets me back to normal. Please ask your doc first, yeah sounds crazy, a PWN on Valium?
    A lot of fine-tuning, never ending.

    (This IS a “rant” post, so I’m rolling)

    I was told and read that this illness was not progressive a few times. I don’t believe that anymore. Today I can do resistance training, with no more than maybe five reps. Then like fifteen minutes of inactivity before next set to avoid aerobic breathing. And I hate exercising alone, so I just don’t.
    I used to scuba dive regularly, forget that.
    I’m picking up more triggers as I age.
    I miss my occasional imported beers.
    I miss loud parties.
    I miss the luxury of allowing myself grief for loved ones at funerals.
    I miss doing things outside on sunny days….
    Jason, I remembering being able to take a drug holiday. Now, if I miss a dose of ANYTHING, I’m in bed with a sleepmask on, barely able to construct a useful sentence.

    I’m very sorry to be to be so pessimistic, but I don’t expect this train to ever stop speeding up. Well I just turned 60, so… actually I guess I’m still doing well. I’m a college proffesor still teaching!

    Moderator @ferret

    I do what I can, when I can. Some days are diamonds and some days are rocks. I’ve been pushing the envelope lately (with some home renovations) and am bagged. Balance. It’s all about balance and finely tuned limitations of your expectations… which are constantly getting tweaked.

    Keymaster @jasonm

    @cnlmustard Yeah that’s what happens on a medication holiday if you’ve been taking stimulants chronically. It’s because your brain has become dependent on stimulants and has adapted to having them so when you take a break, it’s pretty awful feeling. You can just take less once per week or so. The idea behind a holiday is to allow your brain to go back to baseline, although it can take awhile. If I take a break, I usually will just write the day off but it does get much easier to take a break over time. It gradually decreases the horrible feelings of taking a break and increases the effectiveness of the meds when you do take them.


    Where am I
    Participant @where-am-i

    I’m having a hard time too. Thank you all for sharing your experiences. I am sad to know that there are so many people out there who are struggling with narcolepsy, but I am also comforted by the fact that I am not alone.
    I have been dealing with this extreme exhaustion, pain, mental fog, and cataplexy for almost 7 years now and every year I feel like it has gotten worse. Once I spent an entire day trying to remember the name of the college I went to. I was diagnosed with narcolepsy only a few months ago, but other than finally putting a name to all the crap, I have gotten no relief. I have tried a few medications but I have a degree in psychology and am rather uncomfortable with manipulating my brain chemistry in such unpredictable ways. The most painful thing for me was realizing that no one will ever be able to truly understand just how miserable I feel every day. I have told a few friends and family members about my diagnosis, but all have offered advice that frankly insults my intelligence. I have a hard time feeling like having a functional, independent life is possible. I deeply miss those times when I was energetic and optimistic and happy. I feel like a zombie. I feel like, though this is a part of my identity, I am no longer myself.
    I wonder if there is anyone out there who has “overcome” his or her diagnosis? I know it is not curable, but is it possible for someone to become *relatively* asymptomatic? Are there any people who have found a way to deal with their symptoms without medication(s)? I have done some internet surfing on alternative medicine but have mostly been disappointed by the huge diversity in effectiveness.

    Moderator @ferret

    @where-am-i We all understand what you’re going through. I would suggest you check out the Non Rx Strategies part of the forum.
    I was diagnosed in 1986 N with C. It has been a struggle and you may not like my alternatives but it’s doable. I am now close to 67. Other than having a scheduled nap now for three hours every day (which I’ve also been doing for a very long time), I am asymptomatic. Cataplexy ceased on Dec. 2, 2014 when I started taking Cannabis oil. I can bring it back by stopping the cannabis oil. I also vape nicotine with menthol. Both have worked for me. YMMV. But do please read because I have done a lot of research and have provided links. Take your time and digest the information and decide if this is possible. I had a disastrous time with Ritalin and Tofranil when I was first diagnosed and have steered clear of pharmaceuticals since that time. I did try Modafinal for about six months after it had been on the market for 10 years. It kept me awake but felt strange so I stopped.
    We are all unique and it’s a struggle to find what works for you. It’s also very important to eat a healthy, chemical free diet…preferably one that you have cooked yourself so you know what’s in it.
    Best of luck to you and please keep us informed as to your progress. Shared information is power.


    Participant @natdoc

    Where am I
    There is never a single answer to this dilemma. Everyone must find what works best for them.. There are folks to guide and assist in the journey but in the end you must make the decisions.
    Never do anything you are uncomfortable with, always consult a physician you trust and one that LISTENS.
    There is no right or wrong answer, that being said, I am a huge fan of Traditional Chinese Medicine and frequently recommend this to folks who do not wish to pursue pharmaceutical avenues. Listen the Chinese have been practicing this art for nearly 5000 years compared to our 200, and I for one believe they have many answers we have been looking for in every area of Health management.
    Perhaps this may interest you in your pursuit
    Best of Luck


    Participant @dg

    Xyrem and Nuvigil works well for me.

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