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16, Lost And Not Sure Where To Go


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#1 Skatinforsatan

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Posted 13 September 2013 - 05:21 PM

Freshman year in highschool, I went through the first month fine. All of sudden I couldn't sleep at night, started falling asleep around the same time the bus came. I always told my dad I was sick or something so I could stay home and sleep. I missed about 150 days of school and finally the court stepped in and gave me 35 days in some kind of placement. Anyways, I got in fights, suffered from mental breakdowns, finally got in enough trouble for another 35 days. I still couldn't sleep while I was in the program, so the court ordered a sleep study. Told my doctor about the lack of sleep, and did some research of my own and asked if it was possible that I had delayed sleep phase syndrome. He said it was a possibility, so we did the sleep study, I slept all night for the first time in months. He then ordered a multiple sleep latency test, I got an average of falling asleep within 10 minutes of all for naps, and reached REM within 5 minutes. So yes, I got the diagnosis of narcolepsy with cataplexy. I take nuvigil, but it often gives me symptoms of a heart attack (heart racing, pain in my chest, shaking violently) so I stopped taking that. I'm on venavlaxin, for cataplexy, but Ive always struggled with weight and it kills my appetite. It's now my junior year and Ive dropped out, still can't sleep at night. So I'm here now, I'm planning on getting my GED. But, what do I do? I've just been miserable with this, my social life has stopped because I don't go to school and the few friends I had after that I couldn't see because I'm asleep when they're awake. Have terrible anxiety because I'm terrified to actually try and grow up, and live with this because it's pretty difficult now and I don't have anything to worry about with my dad taking care of me. I need to know, does it ever get better? Is there any real hope down the road? I just want someone that lives with this to tell me man.

#2 exanimo

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Posted 13 September 2013 - 08:04 PM

I'm very sorry to hear you are struggling. :(

It is very hard. I was diagnosed at th age of 20, and am now almost 22. I have had it probably since at elementary school. I found the transition to adolescence to be very hard. I ended up with depression, issues of self harm, and even social anxiety. My freshman year of high school was especially hard, and I too missed a lot of days. It got to a point where I begged my parents to take me to an acute behavioral health program - where I stayed for 2 weeks. From there, my family, myself and the doctors made the decision to send me to a long term behavioral health program. I was there 10 months, and it was the best thing for me. I hated it at the time, there were many girls who were there for extreme behavior problems and the staff turnover was ridiculous. But I made it my goal to learn as much as possible and become a better person. And with the help of the staff, my family, and my therapist, I did.

I entered into a career and technical high school, where I took classes geared towards the health industry (as well as the general requirements like English, math and sciences.) I did so much better! In treatment i learned leadership skills, how to control my anxiety, what integrity was and it changed my life. Today I am a junior in college, have held down my part time job as an in home care provider for the elderly for two years now and have been in a stable relationship with my partner for a year and a half. I still struggle, especially with narcolepsy, but I have the skills to cope with changes and no longer feel like I don't have control.

There is hope - and in times when it seems like there isn't, it is so important to remember that there is always hope.
The most important thing I learned in treatment was that I have control of myself, including my thoughts, my words and my actions (including reactions.) that is all I have control over, and there is no point in getting upset about the things I don't have control over, nor any point in trying to minimize the control I do have; pity parties are not going to get me anywhere. ( I hated when my parents told me I was throwing a pity party- but in retrospect it is very true- if something is bothering me I need to fix it and not waste my time complaining about it). Now venting, is different. It is very important to have an outlet to bounce concerns, ideas off of. It is part of the thought process!

If I have any advice, it would be to dig yourself out of the darkness you are in. Look at yourself and ask what is holding you back and what can you do to improve it. Perhaps seeing a therapist, joining a support group, or finding a friend who is willing to listen and help. The transitions in life are th hardest because we can only see the present, it is never easy to see what is coming- but it is imperative to try and use these times in a way that will better your life now and forever.

I would recommend the Narcolepsy Pen pals group on Facebook, and there are a number of other narcolepsy groups as well ( on Facebook).

I hope that some of this might console you and give you some insight. Feel free to message me if you need someone to listen. :) and welcome to the NN forum, I hope you will see you are most definitely not alone!
-Jessica

#3 Potato

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Posted 14 September 2013 - 12:08 AM

Did Nuvigil work for you aside from the anxiety-like symptoms? If so, you can ask your physician to prescribe you metoprolol or another beta blocker assuming it doesn't interact with any other medications you are on. This will absolutely stop the increase in heart rate, shaking, and other adrenaline-related symptoms that result from the Nuvigil.



#4 Skatinforsatan

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Posted 14 September 2013 - 12:37 AM

Well then, hearing that makes me less worried :)
And I have a strong suspicion the reason my nuvigil does what it does is because of my anxiety, I get so worked up and it just freaks me out. I have an appointment soon, so I'd like to try an anti anxiety medicine. Highschool, for the first month, I did tons of drugs because well, it's what I wanted to try. When I did Xanax (whether popped or snorted) it helped quite a bit in just taking the edge outta life. So hopefully something similar will help.

#5 AnnieJoy

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Posted 14 September 2013 - 10:24 PM

If you need anyone to talk to, I'm in the same boat. I actually ended up leaving high school, for many reasons, but one was that I was just too tired to do an 8:45 to 3:45 schedule anymore. 

I left. 

Went to college instead. And it's working better so far. 
It's still hard. 
And I know it will be hard. 
But doable.
I have a supportive family, and amazing boyfriend: and even when times get tough and i feel like I'm wearin' them too down, somehow we always bounce back. I'm glad you got that diagnosis! Mine is still in progress, but I know... well I probably wouldn't have stuck around at school had I not started the diagnosis process. I got sick in January. I've lost 34 pounds since then, sleeping through meals. And it's been a long rough journey. I can't imagine what I'd do or where I would be right now if I didn't have the reassurance that there was something wrong, that could at least be pinned down with a name. 

 

Go to the doctors.  Health first. School can wait. School has to wait. I was Ivy league bound, and then I got tired, and down. All my teachers just thought I was less motivated. All my doctors just thought I was depressed. And I just needed someone to tell me it was okay... to be sick. I desperately needed someone to tell me that that was okay. And no one did. 

So I told myself. 



#6 tjunderw

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Posted 18 September 2013 - 06:32 AM

Yes, it does get better! And though many of us here would report feeling relieved after getting diagnosed having an answer, I think 99% still had the "holy crap what am I supposed to do now?" phase. I was a week shy of my 23 birthday when I was diagnosed, and even as a grown adult it was a huge tough change, and it's okay to feel overwhelmed. The next step is deciding to take control of your life, and it is possible if you want it to happen.

 

Medicine wise, have you taken or discussed Xyrem with your doctor? I don't personally take it but many people here could tell you about it. It's a night time liquid that is supposed to facilitate REM sleep, and it usually knocks people well out...but again many people here with experience taking it could explain it more. Have you tried other measures such as melatonin or sleep aids? Pairing what medicine you take and how with a consistent bedtime, scheduled daytime naps, a midday walk, and watching when you eat certain heavy foods could start to set your body up for a more healthy cycle.

 

If you are thinking about going back to school, with a recognized disability they are obligated to provide assistance such as a 504 plan which would make changes to your daily schedule. It could help you come in at a later time, have extended test opportunities, allow for scheduled naps or "study hall" periods for naps, a note-taker to help in class. Additionally, every university has a disabilities office to help with accommodating your needs to be successful.

 

Try setting small goals, things that will keep you encouraged to move forward. Getting your GED is a great goal, but even smaller things like meeting your friends out for dinner or do an extra school assignment once a week or . Soon you will see how many things you really are capable of. If you are starting to feel run down and frustrated you can try writing down what you feel then throwing it away...maybe sounds lame but acknowledging your issues and throwing them away could help you not dwell on them. 

 

You are the only one who knows how you feel so advocate for what you want. It you are really struggling by all means go back to your doctor every week until you are feeling well. Speak with a counselor perhaps about sorting through some emotional baggage, I think everyone here could say they've felt hopeless at least once dealing with this disorder and that's okay. The important thing is to realize this is your life and you can make it what you want, and things can only go up!



#7 carrieannburns

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Posted 17 April 2014 - 07:04 AM

Freshman year in highschool, I went through the first month fine. All of sudden I couldn't sleep at night, started falling asleep around the same time the bus came. I always told my dad I was sick or something so I could stay home and sleep. I missed about 150 days of school and finally the court stepped in and gave me 35 days in some kind of placement. Anyways, I got in fights, suffered from mental breakdowns, finally got in enough trouble for another 35 days. I still couldn't sleep while I was in the program, so the court ordered a sleep study. Told my doctor about the lack of sleep, and did some research of my own and asked if it was possible that I had delayed sleep phase syndrome. He said it was a possibility, so we did the sleep study, I slept all night for the first time in months. He then ordered a multiple sleep latency test, I got an average of falling asleep within 10 minutes of all for naps, and reached REM within 5 minutes. So yes, I got the diagnosis of narcolepsy with cataplexy. I take nuvigil, but it often gives me symptoms of a heart attack (heart racing, pain in my chest, shaking violently) so I stopped taking that. I'm on venavlaxin, for cataplexy, but Ive always struggled with weight and it kills my appetite. It's now my junior year and Ive dropped out, still can't sleep at night. So I'm here now, I'm planning on getting my GED. But, what do I do? I've just been miserable with this, my social life has stopped because I don't go to school and the few friends I had after that I couldn't see because I'm asleep when they're awake. Have terrible anxiety because I'm terrified to actually try and grow up, and live with this because it's pretty difficult now and I don't have anything to worry about with my dad taking care of me. I need to know, does it ever get better? Is there any real hope down the road? I just want someone that lives with this to tell me man.

 

 

 

Here are some support groups you may benefit from... 

 

 

For Young People With Narcolepsy:

  1. Narcolepsy Youth: https://www.facebook...97366243659141/
  2. Young Adults With Narcolepsy: https://www.facebook.com/groups/YAWNs/
  3. (NAPS) Narcolepsy Awareness & Peer Support: https://www.facebook...ups/NAPS.group/
  4. Young People With Narcolepsy:https://www.facebook...ungPeopleWithN/

 

 

*Groups I Find Priority (Most Helpful)*: 

 

 

For Students With Narcolepsy:

 

Students With Narcolepsy: https://www.facebook...65929143438477/

 

Narcolepsy Gamers: https://www.facebook...y.Gamers.Group/

 

People With Narcolepsy Pen Pals: https://www.facebook...colepsyPenPals/