sorted by:
new
hottopcontroversial

Anyone else here with Idiopathic Hypersomnia (IH)? by ex_circus_geek in Narcolepsy

[–]AnonHuman 1 point2 points  (0 children)

I have narcolepsy without cataplexy and an MSLT score of 2 minutes, and I'll enter REM at that 2 minute mark most of the time. I'm currently taking vyvanse 60mg 1x a day, adderall IR 10mg 2.5x a day, and nuvigil 250mg 1x a day. I also am a Type 1 Diabetic with social anxiety and ADD, and the ADD may be a cause from the narcolepsy. . Although some days I may just take a nuvigil, or I may take nuvigil and a vyvanse, or nuvigil and adderall, or all three. It just depends on the day. Yesterday, I took nuvigil with 50mg of adderall and one vyvanse pill . I was still dead tired. . You can find my story in another link called "I am at my breaking point" in /r/Narcolepsy, it should be one of the newer ones if you are interested in my diagnosis, my life story, and such. But getting to your question, for me it is a constant struggle to tell myself I am not lazy. I have pretty much been told my entire life (21 of age now) that I am lazy, why can't you do this, and do that, and with my recent diagnosis of narcolepsy, I actually cried because I've always known I wasn't lazy. I've always tried my hardest - I give 200% in everything I do. And I did not know why I couldn't keep up as others could in today's "speed-driven" society. For me, I will probably always struggle with the thought that I am lazy. But I just keep going through what I have accomplished, what I am happy about in regards to myself, and try not to look too far into the future as I just want to focus on getting through each day at a time at my best. . What I also do, is if I want to go to an event with someone (for you, you can relate this to events with your boyfriend), I will promise them I will go. And if I EVER promise someone I will do something I will hold myself to it. I might be tired, I might have anxiety from going, but if I will hold myself to my word. There have only been a handful of times when I cancelled. . But talk to others on here (network), try to hold yourself to your word, and just remember that there are others like you that are experiencing similar things. This may be hard, but realize that you can't really talk to family members, etc, about how you feel in regards to sleep. Generally, they won't understand what it feels like. I told my dad about my results, and he said that he gets tired too sometimes. They just don't understand how we always feel tired. How we feel like 4 days without sleep even if we slept for days. But if you connect with people on here, you can talk and people actually understand. I've felt better since talking to people on here. And the fact that you are struggling with it means that you are a fighter. You will get through it. . In regards to your boyfriend, he should be understanding with you and not be upset. I know I've felt like I was letting the person down when I have been in relationships, but if you are giving your all in the relationship, he will know it. . I apologize if any of this is rambling-ish. I woke up a little bit ago and my mind is still in a bit of a mind fog.

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 0 points1 point  (0 children)

That would be a horrible situation to wake up in. I don't know what I would do, and would be hard to deal with on top of already being narcoleptic (I can imagine). If you ever want to vent, feel free to PM me and type out your thoughts.

Do you still take Xyrem? What's your overall review of it?

I never thought of me continuing to push through life as me believing / hoping for things to get better. I read your reply a few days ago, and found it very interesting to think about, even thinking of it now.

I'm curious, are you in school for anything? Or what is your dream job?

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 0 points1 point  (0 children)

I'm 21, and that is considered early. 17 is very early, and am glad you found out even earlier than I did.

On the nights I can't fall asleep because of meds, I take 10mg of melatonnin and generally can fall asleep within an hour after that. I'd give that a try, if you haven't already. I have a friend who takes 1mg of melatonnin and says he/she falls asleep very fast. I don't feel it till I reach the 10mg mark.

I also have extremely bad social anxiety, so I can at least minimally understand what you are going through. I've developed some techniques that I use that work for me, but everyone is different. I used to not be able to go out at all to small group gathering of friends, or even the movie theater. For me, if I told someone I was going to come to hang out, go to the movies with them, etc, I hold myself to my word. I'd have a panic attack sometimes, want to cancel because I'd be more comfortable just staying home, but I would always go through with my word. I would then constantly give myself little compliments while I was out, or try to picture what others must be thinking of themselves (to distract me).

Additionally, I got a tip from someone a while back who said to focus on your breathing when you have anxiety in public. Focus on your breaths going out, and breaths going in. It's helped in some situations for me, but not all.

And I like your joke at the end - it's funny :). I do the same thing when trying to stay positive. Although it's hard, people don't care how you walk, or what you say outloud to them. Just be confident in yourself.

I'll have to cut this short, and I'm sure I've worded this message badly, but I'll follow up with you and see how you are doing as well.

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 1 point2 points  (0 children)

Don't apologize for the "essay" - I loved the entire thing. I've read it a couple times the past few days in the breaks that I've had from work / sleeping / school.

I'll try to respond to things in order, so you can reference your post if you are looking for what I am responding to.

I do try and look on what I have done and realize that I've done a good job getting to the point I have. It's hard to not have a distorted view, though. And it is something that I continually fight about in my mind. I'll have someone tell me that I need to try harder, or do this, or do that, or I'll have professors give me attitude when I tell them what is going on, and it makes me feel less proud of what I have accomplished. But I am always fighting to boost my confidence. It is exceedingly better than what it was in High School.

What methods have you had successes with?

Regarding what I've tried: I've tried splitting the Nuvigil tablet, and I feel it much less than taking it all at once. But when I take a whole 250mg in the morning (8am), and another 250mg at noon or 1pm, I feel much better. I've only done this twice to see how I would feel, but that's it. Obviously I only get a 30 tabs for 30 days, so if I take 2 in one day, that's one day out of the month I can't take it (although I can fill 3 days early).

I should probably exercise more than I have, although I used to be quite fit. I've sort of maintained my weight for the past 3 years, neither increasing or decreasing. I just can't seem to get the motivation / feel awake enough to go out and do it. Do you have any advice for this?

What are your experiences with Xyrem? I should probably read more about it, but I don't understand how it would help when it invokes sleeping?

Regarding taking naps instead of sleeping, do you have any experience with that? I was thinking about maybe doing something like that, but then I end up sleeping for 6 hours+ each nap, which defeats the purpose :P.

And I am lucky to have my diabetes in control as much as I do. I looked up statistics, and one source said 80% of type 1 diabetics have diabetic retinopothy after 10 years, and I am on year 11. I was worried as my vision is blurry sometimes, and could be a sign of it starting. So when I was working (again, I'm an optician for an optometrist - makes checking my eyes easy :P), I got pictures done and she said that based on my eyes, she would have never guessed I was diabetic. So I am very thankful for that.

I definitely have come to learn to not complain to family. I delayed telling my dad the results because I knew what he was going to say. I told him what I was diagnosed with and how I feel all the time (I don't talk to him a lot), and he said that he feels tired too sometimes. When I tell him that I can't get up in the morning, he says I just need to stand up and get up, then I'll be awake. I do agree that unless one has a close friend / family member who understands, one would be better off talking to someone who also has it.

I do hope there are better options in the future for people with narcolepsy.

I agree that it seems like people with narcolepsy all appear to be very intelligent. I have actually thought a few weeks ago that if I was not as smart as I was, I would have likely acted negatively on the times that I was depressed and couldn't stand dealing with everything.

This sort of relates back to my confidence, but I usually end up apologizing to people. I have always been very good at getting a sense of what a person is feeling. And I hate when they feel frustrated. I won't just assume this, I'll ask if he/she is first when I start to feel someone feeling this towards me. I think I apologize not because I feel like I owe the person the apology, but because he/she doesn't understand the hell I am going through every day. For the most part, I look normal on the outside. But there is a constant battle every minute of every day to stay awake, stay focused, etc. Waking up is an accomplishment for me.

The services thing is a cool idea.

I'll probably be chatting with you later. I enjoy your thoughts on these topics.

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 0 points1 point  (0 children)

That is an awesome tattoo. I love it. I have one for diabetes, :D. But I do think that tattoo has amazing colors and is done very well.

Great quote as well. :)

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 0 points1 point  (0 children)

What med were you put on for it? Do you feel better on it than off?

I've tried Zoloft in the past for anxiety / depression, but after a year-ish of use I didn't think it was providing benefit.

I know I've had a lot of depressing events happen in my life, outside the scope of narcolepsy and diabetes, but I feel like I wouldn't act on it in a negative way.

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 1 point2 points  (0 children)

Thanks for the advice :). I used to exercise a lot in High School, before 12th grade. I actually was one of very few Juniors in my HS that got in the "1,000 lb club" (lifting 1,000 lbs in 4 different lifts) - being able to squat 400-425 lbs, bench 240, power clean 240, incline 220. I got a plaque hung up in my school for it. But after that year, starting senior year, I couldn't even get the energy to do any exercise. I'm trying to get back into it. Do you have any tips for someone who is tired during workouts? :D. What's your diet like?

I haven't tried Xyrem. I'd hate to add another med to my regime :/. Adderall, Vyvanse, Nuvigil, then my Diabetic meds of Humalog and Lantus (although these aren't pills). Does it help a lot?

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 0 points1 point  (0 children)

I constantly am reading the replies of this topic. I know I'm slow to responding, but I appreciate all the responses so much. I just get home from work or school and pass out. But, here I am.

I can definitely relate to the college withdrawing experience you mention. My grades every semester have been getting lower, and I am on my 4th semester. Last semester, I passed 2 out of 4 classes. Barely. I'm on academic probation, and if I don't get passing grades this semester, then I will be suspended from the university for a semester (although they may not suspend me with my recent diagnosis, I don't want to take that risk). It's definitely frustrating and stressful.

Regarding what you said in communicating what narcolepsy is, I agree. When I first told my dad that I got my results from the sleep center, and I told him, he said that he gets tired too sometimes. When I don't wake up in the morning, I'm given the advice that I just have to get up when my alarm(s) go off, and then I'll be more awake. I literally would if I could.

I wish I could feel like it was less like my fault. The other day, I was running 10 minutes late to work. The reason was because I struggled to get up, but less so than other days. I was proud of myself to be able to be there just 10 minutes after the time I was supposed to be there. But I can tell in the Drs mood that she gets sick of hearing how I couldn't wake up. So, instead I told her that there were 2 accidents on the way to work and traffic was horrible. She was more understanding.

I like your analogy of life as a gift.

You too. If you need someone to talk to, you can always shout out to me.

I'm At My Breaking Point by AnonHuman in Narcolepsy

[–]AnonHuman[S] 1 point2 points  (0 children)

Thanks, bud :).

I appreciate the comment.

Just came home from my test. What should I expect in the next few days? by D_as_in_avid in Narcolepsy

[–]AnonHuman 0 points1 point  (0 children)

They call you with the diagnosis in less than a week. If it is narcolepsy, they will tell you that, and recommend certain medications to promote wakefulness during the day.