Hi everyone, I don’t think I’ve made a post on here yet but I thought maybe I’d give it a shot.
A few months ago my dosage of adderal was upped to 30mg in the morning and I’m not sure what dosage of venaflaxine I’m on but I know it’s really low. Recently I’ve been noticing a decline in my motivation and it’s getting to the point where it’s seriously affecting my grades in school.
I’m a junior in high school and this year is very important for me since I have only this year and my senior year to prepare for college and make sure my grades are decent. I feel as if my medicine isn’t really helping me anymore, but at times I feel maybe how I’m feeling is normal for someone with narcolepsy.
I have to wake up for school at 5:30 to catch the bus at 6 so I take my medicine as soon as I get up but I still feel sort of groggy. My eyes always feel like they’re heavy, but I’m alert enough to listen and do work during school hours. By the time I get home at though I’m extremely exhausted and I have no motivation to do anything, especially my homework. I usually take a nap but naps don’t really help me.
I’ve noticed for a while now my motivation in pretty much anything is becoming almost nonexistent. I rarely do the things I use to enjoy. I use to talk to one of my long distance friends everyday and skype them all the time but I suddenly don’t feel like it anymore even though I really want to talk to them. Other times I really want to study for an upcoming test and I know I have to but I can’t bring myself to do it. It’s been like this since the start of summer and I’m struggling with it. I’ve also been forgetting to take the venaflaxine recently for my cataplexy since I rarely have episodes and it has only been when I’ve laughed, but I’ve been noticing whenever I get nervous I start to slur or stutter badly and I can’t get my word out and I sound like a fool and embarrass myself.
I’m not suppose to have an appointment with my doctor for another couple months but I’m not sure if I should bring the lack of motivation to his attention because I’m not sure if it’s the medicine not being effective or if I’m depressed. I’ve always had very low self esteem and lean towards being very pessimistic to myself so I do often feel down but I’ve never brought this up to anyone and I’m not sure what to do. I just want to not have to struggle in school and have my grades plummet. I really want to make straight A’s in my classes but I currently have dropped my grades and only have 4 A’s and 4 C’s. I really need some help guys but I’m not sure what to do.
Hi everyone, I don’t think I’ve made a post on here yet but I thought maybe I’d give it a shot.
I just want to start by saying you aren’t alone. What you’re going through is hard! I definitely relate to a lot of your experience and I think others will, too. I had a bunch of helpful thoughts as I was reading your post but I’m crashing hard so I can’t share them all now. I think I might really be able to help you though if you want to work with me. Let me know!
Do you only take 1 dose of Adderal? When i used to be on Adderal I was taking 20mg 3x's a day. I took it about 4 hours apart. As far as feeling like you don't want to do anything, that happens to me at times when I'm trying to accomplish too much at a time....but once Adderal wears off people crash bad so that may be what is happening to you, especially if you only take it once in the morning. I couldn't get through without the 2nd and 3rd dose. Right now i'm on Vyvanse 50mg 2x's per day and it is alot smoother, meaning i don't get that sudden crash. It is a ADHD med that is supposed to be a 1x a day extended release pill that is supposed to last about 12 hours i think...however since we have narcolepsy that 12 hours is about 6 hrs for me. I take my pills at 7am and at 1pm each day. I have my bad days and my no so bad days but its been helping me.
Hi, and thanks for your post. I'm sorry to not reply sooner, but I just saw this. You did the right thing to reach out to us!
I probably don't have the best solutions, and I've not taken the two meds you mention (I've only taken Provigil/Nuvigil and I don't take anything for the cataplexy), but just some general info.
I completely relate to your situation. Having dealt with this for 30+ years I daresay we all struggle with this, sometimes more and sometimes less. I suggest contacting your doctor's office to find out if the change in medications could be part of the issue; medicines don't always interact with bodies the way that the pharmaceutical companies promote them. Also, if you've started any new medications (such as birth control or even antibiotics) that can throw things "out of whack". You are also just at the point where your body is "settling" into your adult self, so perhaps as your hormones stabilize you will need a new dosage. If you're not aware, most drug studies are done on men (whose physiology is much less complicated than women's), so things like hormonal shifts are not taken into account when the recommended dosage is established.
Another environmental consideration is what you eat. Although I CRAVE bread -- especially the white, nutritionally void type -- it will render me useless in a very short period of time. It sounds like you don't have much time in the mornings, but perhaps you can prepare a fairly healthy lunch and snack in advance that emphasizes protein and fruits/vegetables. If your "tank" is empty -- or running on tainted fuel -- your body will seriously struggle to do anything. At a minimum, I recommend taking a good multi-vitamin and ensuring that you stay well-hydrated. If nothing else, having to get up to use the bathroom will get you moving. ;)
Again, I'm not sure where you live but I live in Colorado, USA. I am SERIOUSLY feeling the impact of decreased light as Fall has arrived here...not only in how early I wake up, but in my physical energy level and in my psychological desire to do anything (i.e., motivation). If you have the means to use brighter, more "true" color light bulbs in your house DO IT. The more you can simulate bright sunlight the more your body will be motivated to do something other than sleep!
If you have the means to talk to a GOOD counselor (maybe start with your school counselor, depending on your previous experience with him or her) he or she may be able to offer some suggestions on working with your self-esteem and some of the self-talk that can keep us in the downward spiral that can lead to depression and further exacerbate the situation.
I truly believe that EVERY SINGLE ONE OF US has worth, and something to contribute to this world. My lifetime philosophy has become "what doesn't kill us makes us stronger"...and looking back at my life I must be one strong person!
For the legalities -- if you are in the US, you are entitled to accommodation for your illness. It doesn't sound like you are very involved with your school activities (you only mention your long-distance friendship) so you might consider homeschooling, or just cutting your class load so your grades are better even if it takes another semester or so to graduate. There are online and distance options where folks earn dual credit for high school as well as college for certain classes, and you would be completely in control of when you do your work as long as it's done on time.
And please -- REACH OUT TO YOUR FRIEND!!!! Even if it's a quick e-mail explaining that you're really struggling with your illness and can't find the energy to stay in touch like you used to, let this person know you value him or her and that your friendship is important. I would hate to see a connection like that lost because of this; you never know what the other person is thinking (such as that you are too busy or have rejected him/her), so put the effort into staying in touch...good, loyal friends are WAY too valuable to be lost to this illness.
Lastly, if none of what I've mentioned rings true for you, know that it's okay to completely dismiss it and do whatever else you find works for you. None of us live in your body or have your experiences; all anyone (including the doctors, your parents, and your school) can do is apply their version of reality to what they perceive to be your circumstances and go from there. Even with the best intentions, sometimes what they perceive and judgments they make are very different from your reality; as much of a burden as it can be, we all must be our own best advocates and insist on what is best for us as individuals.
Hope some of that was helpful, let me know if you have questions...
Your definitely not alone Des. You’ve made the 1st move by reaching out here for support. Have you tried other meds. I haven’t been on Adderal but it’s not a medication I was aware of that helped (pwn) people with narcolepsy. I am 14 years on provigal(modafinal) for my EDS. Veneflaxine for my cateplexy. There are many different types. It’s important to take regular, slurred speech is cateplexy also. Missing doses may have side effects also. Medication doses always take effect immediately. I set my alarm 1 hr before I’m due to get up and fall back to sleep. Usually by then it’s ticked in and I’m a little more alert.
Naps are so important too. Gluten free and low carb seems to help so many people with auto immunine disorders and narcolepsy is no different. I ignored this for years as I CRAVED my way through bread and sugary foods to find myself exhausted within minutes. Give gluten free a try and wishing you every success… It is really difficult to motivate yourself when ALWAYS sleepy but support here and from your doctor can help xx
elaine armstrong said:
Your definitely not alone Des. You've made the 1st move by reaching out here for support. Have you tried other meds. I haven't been on Adderal but it's not a medication I was aware of that helped (pwn) people with narcolepsy. I am 14 years on provigal(modafinal) for my EDS. Veneflaxine for my cateplexy. There are many different types. It's important to take regular, slurred speech is cateplexy also. Missing doses may have side effects also. Medication doses always take effect immediately. I set my alarm 1 hr before I'm due to get up and fall back to sleep. Usually by then it's ticked in and I'm a little more alert.
Naps are so important too. Gluten free and low carb seems to help so many people with auto immunine disorders and narcolepsy is no different. I ignored this for years as I CRAVED my way through bread and sugary foods to find myself exhausted within minutes. Give gluten free a try and wishing you every success... It is really difficult to motivate yourself when ALWAYS sleepy but support here and from your doctor can help xx
I’m not really sure how to really work with replying to comments since I’m doing this on my phone and it looks a bit odd so I hope I’m doing this right haha. It would be great if you could help me work with things as long as it isn’t a bother c:
I hope I’m not spamming with trying to figure out how these comments work, I’ve never really used blogging before (unless you consider tumblr/Instagram but the format is different)
I’m only on one dose. It has really messed with my appetite and my mom was worried about it so my doctor compromised with her and had me on just one dose as soon as I wake up. I’ve noticed I’m not hungry during breakfast time or lunch so from 5:30am to about 3pm I don’t eat or really drink anything. But I’ve never really eaten breakfast before but I use to at least eat a bit of lunch. How can you usually tell when you crash because I’m not sure when I exactly do but I know by the time school is over I’m unmotivated.
Sorry it is taking so long for me to reply as well. I had to take the PSAT today and I’m swamped with hw/work I haven’t finished at school. I generally don’t take their medication because I’ve heard of medications canceling out others so i only really ever take antibiotics if I’m sick enough to have to. I’ve never heard about them mostly testing on men, that’s actually pretty interesting. With what I eat though I generally tend to eat a lot of cereal, sandwiches and chicken, but I’ve eaten like that for a while now before i started noticing my motivation declining, but it could be contributing to it like you mentioned.
I live in Wv so I’m not sure how to really describe the decreased light since I don’t think it’s a big impact where my state is located. I’ll have to do some research on that about how it affects my state. About the counselor thing, my school counseloEs rarely talk to us. I’ve put in a form to speak about what classes I should take next year and they never called me down to talk with me so I’ve kind of taken it as they don’t really care too much so I wouldn’t try to reach out to them, plus I’m shy so it’s kind of hard for me to speak about issues I’m dealing with aloud.
I’ve asked my mom if I could do homeschooling with online classes but she doesn’t want me to. I think she thinks I’ll slack off and plus I’m pretty antisocial and she probably wants me to try to be around people more. My teachers don’t really make accommodations for me except that I have to stand up if I feel like I’m tired (which I don’t do because I’m alert as long as the lights are on) and sometimes when I ask they’ll keep the lights on for videos but other classmates like it with the lights off so I just don’t say anything as long as I can stay awake which I haven’t fallen asleep except once all year in class. One teacher told me i should get a student aid to follow me around but I don’t want to get weird looks from others or be treated too differently. My mom has argued a lot with me on the issue of me being treated differently because she mentioned getting a disability check for me to help me with college funding and it upset me because I want to work like a normal person for the money or get a scholarship.
"Discussions" is like a forum where anybody can reply and you're using this feature just fine. Spam is intrusive content which moderators watch out for and stop, and your replies aren't spam :).
So many good considerations and suggestions in your discussion! I've struggled in school before (and after) my diagnosis and have enormous respect for the process of finding the healthiest way to work. Yes, tell your doctor anything that is significant (teamwork). You will find your way.
First I am really sorry for what you are going through. I had been a narkie since I was born. I never took any medication and survived with coffee. Tons of coffee. I went through my teenager years and then college time enduring what you do with no medication because I did not know I had N. If I had gotten help I would have done much better I think. I started taking meds for my N 2 years ago. I did not (and don't) want to take adderall. I fear that drug as much as I fear ritalin and Xyrem. I don't like their side effects. Currently I only take Modafinil and coffee. It does not give me the rush to be active and do thing like Adderall does to me, but it keeps me bright and awake; overall I feel smarter. It might be just because it takes the tiredness away or maybe it's indeed the smart drug people talk about. I do not get C attacks with laughter though, I get them when don't get good sleep. You might not feel that naps helps you but believe it, they do.
Maybe it is better if you can see your doctor sooner, and yes, tell you doctor about your lack of motivation and depression. Tell your doctor everything. Ask him for options. Research on your own and read people's reviews. Consider that most, if not all, antidepressants do cause depression. There was a recent study and report about it. Ask your doctor.
Often I lack of motivation to go to the gym or to do any exercise activity. I push myself. I drink a coffee or take a protein shake and do it and I seek for things I enjoy once I am doing them, like kayaking and biking.
For myself esteem what I do is I always go out of my way to look as good as I want to look. I love makeup, I love shoes and I love dressing up. I live in the Midwest where most people don't dress up at all and I don't care being the only one wearing a pretty dress. Always keep in mind that you are a very pretty girl, because you are.
My best wishes to you.
Here's a link to an article about SSRI's and tardive dysphoria:
For people with very serious depressive illness medication is part of a treatment plan carefully considered by the psychiatrist and patient. Research is good. Remember that as an individual you have options, and in your treatment you may find some meds will work out for you and others may not, another reason to work closely with a doctor.
Use the Search box at the top of the page to find comments here about specific medications, and remember that statements made in this group are from an individuals experience. We share a diagnosis but we're all different, interesting, wonderful people :).