9 replies to this topic

[ZombiePrincess]

So I'm a full time student, full time wife of a full time medical school student, and a part time college student desperately trying to keep my head above water. I was diagnosed w/N last month but have been dealing with it for years. Not to mention growing up with a mom who also has N. Recently my N has started showing its ugly head more and more which prompted me to really think about how much longer I can keep treading water like this. My doctor is treating me w/Adderall XR (40mg) and Xyrem (just started it but currently taking 3g twice per night) and it is barely enough help to get me through my work day more or less night school and then there is my poor husband drowning in his own school work who just wants something somewhat edible when he gets home in the afternoon. Am I trying to do too much!? Over the past few years everyone has told me to be patient and just do what you can but every year that passes, what I can manage seems to be less and less? I feel like I'm so close to my bachelors (only 9 classes away) but only being able to take 1 class per semester that still means like 2 more years of going spring, summer, and fall! 2 more years! Wow! Even reading that makes me want to cry because no matter how much I want to do it, I just don't know if I can! I feel like I'm fighting a battle I can't win and its killing me! On top of all that, I wonder if I will even be able to work when/if I do graduate? In the field I've chosen (Industrial-Organizational Psychology), you really need to get a PHd or at least a Masters but that just seems unthinkable!? Help anyone?

[Geohff]

Only thing I would say here is there is no known "cure" for Narcolepsy. So "waiting for it to get better" will never happen. You can feel better with treatment and life changes to do what you can living "with" Narcolepsy, but your not going to "remove" it. You and your husband must both accept you have a legitimate illness and live your lives accordingly. As much as we draw inspiration from the few disabled persons who overcome and accomplish great things anyway the vast majority of disabled learn to simply live with their conditions. We are not all Super-people as much as we wish we were. But hey, if you are more power to you! You need to do what you can, give it your best effort and let the chips fall as they may.

[ZombiePrincess]

Thank you. I do kinda think I was super! Well, I'm a typical Type-A Personality so I never do anything halfway and have always had really high standards for myself. Actually I literally cringed when you suggested I "let the chips fall as they may". I would never describe myself as OCD but I am a mild-control freak so even thinking about living life like that way seems impossible. But, you are right about needing to learn to live w/N. If I've learned anything from growing up with a mom who has N, it is that it is not going to get better-- maybe worse, but not better! I know there are "better days" but it is still so frustrating to all the sudden go from being a super productive, efficient person to someone who can barely hold it together for a whole day. I guess I'm kinda going through the stages of grieving? I think I am coming out of the Denial stage and starting in on the Anger state. As logical as I am by nature, I still can't help but be angry at myself for failing myself! Part of me wondered today if I could actually hate this new me! I just get so mad at myself--- almost rage-- that I can't make my body do what I want it to (regarding Cataplexy) and that I'm doing everything "right" (taking stimulants for wakefulness by day and Xyrem to sleep at night and Antidepressants/Antianxiety meds for the Cataplexy/Pain) despite my distain for pills and I'm still so tired I can barely do my job anymore. Over that past few years, I've been dealing with all these same issues but the stress of the diagnosis process seems to have really made them grow bigger. Or maybe I'm just so stressed about that they seem to be bigger because I just don't have the mental capacity to process as much as before? All I know is that I was able to mostly-control the symptoms before but they seem to be mostly-controlling me right now and I'm not very happy about it. I sure wish I could catch a break so I could catch up! I sure wish this Xyrem would start showing off its "miraculous" qualities like all the reviews I read about! Oh well, I guess the first step to accepting the things I can not change is to stop fighting them which I'm sure isn't helping lower my stress levels.

[Geohff]

LOL, you sound so much like me, I totally understand you - it as if you wrote things from my life in your reply. I wish I could say I’ve been through it and give you the right solution but the fact is I am still going thru it. I bash myself, I work myself into stupidity and pain, I give up on the rare occasion, I don't think it's fair and worst of all I have not figured it all out yet. The only thing I can do if what I can do. So I plug on and on and I find I get a little done each day, and as time passes these add-up, and in time things get checked off and done. I don't worry about the future anymore it will be what it will be worry or not. My frustration is with the limits and slow pace of the present (that may never change) but my comfort is in looking back on occasion and seeing how much I accomplished anyway with time (that has changed my life for the better.)

Good luck with what works for you but it seems you have accomplished quiet a bit yourself already, take pride in that.

[ZombiePrincess]

Wow. That is so weird that you say that I sound like you b/c after I responded I was surfing the forums and found this post under the Diagnosis Forum. It was really long and I was really tired but after I skimmed through I knew I had to read it! I could relate to just about every line. At the end (after reading the responses and updates), I looked up and saw your name! I wanted to write a reply when I realized it was your story but I couldn't log in from my iPhone. Anyway, I do sincerely appreciate your kind words and can't even describe how thankful I am that you are out here trying to help other people while you are in the middle of your own set of problems! Oh yeah, and your last update surely qualifies as a #10 (note to yourself on a bad day)!

[Saraiah]

...My doctor is treating me w/Adderall XR (40mg) and Xyrem (just started it but currently taking 3g twice per night) and it is barely enough help to get me through my work day more or less night school and then there is my poor husband drowning in his own school work who just wants something somewhat edible when he gets home in the afternoon. Am I trying to do too much!? Over the past few years everyone has told me to be patient and just do what you can but every year that passes, what I can manage seems to be less and less? I feel like I'm so close to my bachelors (only 9 classes away) but only being able to take 1 class per semester that still means like 2 more years of going spring, summer, and fall! 2 more years! Wow! Even reading that makes me want to cry because no matter how much I want to do it, I just don't know if I can! I feel like I'm fighting a battle I can't win and its killing me! On top of all that, I wonder if I will even be able to work when/if I do graduate? In the field I've chosen (Industrial-Organizational Psychology), you really need to get a PHd or at least a Masters but that just seems unthinkable!? Help anyone?

Hi ZombiePrincess and Geohff,

One thing to know is that there are a number of researchers working on medications for narcolepsy with cataplexy, and it's widely expected that there will be significant breakthroughs for people with that particular diagnosis relatively soon, maybe within 5-10 years? And some of those treatments may help those of us with narcolepsy without cataplexy and idiopathic hypersomnia (IH) as well. So even though it's a lifelong disease, the treatments are expected to get even better than they already have within the last 12 years or so (with Provigil/Nuvigil and Xyrem becoming available). It's not an immediate fix, of course, but it's a good thing to know.

Another thing to know is that for many people taking Xyrem, we don't see the *full* benefits of that drug until we've been on a clinically effective dose for 8-12 weeks. So ZombieGoddess, once you and your doc figure out where to level out your dose, you can expect your sleepiness and cataplexy to continue improving from that day for another 2-3 months. I think that's because when we first start taking Xyrem, we've been getting extraordinarily little consolidated slow-wave deep restorative sleep for so very long that our brains and bodies are operating out of an enormous sleep deficit. As we start to get more of the deep sleep that we need, night after night, our bodies and brains start to work better.

Re the finishing college and finding work, and the rest of life: ZombieGoddess, I would neither make big decisions, nor catastophize about the future, till you get to that point three months out after the day that you start the Xyrem dose you'll be sticking with. You just can't know at this point what your functioning will be like at that point, 'cause you haven't been on the meds long enough. Probably sometime in March you'll have been on your final dose of Xyrem for about 3 months, if I'm doing my math correctly? So plan to give yourself a break as much as you can between now and then, and maybe consider really trying to assess where you are and figure things out in March or April. I've met a lot of PWN at this point, and *most* (but not all, certainly) who are taking Xyrem and stimulants are working and/or doing other things most important to them. It's not easy, and all of us have to make choices about how to use our energies that people without narcolepsy or IH don't have to make. But for many of us, the carefully chosen important stuff is possible.

And the other piece of advice that I give people is something that I wish I had known in my 20's and 30's: "There are many roads that lead to Rome." I went into a doctoral program in my 20's, and finally had to leave with a master's due to "depression" (i.e., exhaustion and EDS from undiagnosed narcolepsy, which did indeed leave me depressed at my inability to succeed in the program). I left feeling like a failure - and then realized that, ironically, I was subsequently more able to do exactly the work I wished to do with a master's because I hadn't priced myself salary-wise out of that market. And as time went on, I learned that there were a number of degrees that I could have gotten with less time and effort, and still been qualified to do that work.

There may or may not be ways to do the I/O psych work that you'd love to do without the doctoral slog, but one way to find out is to boldly call up 3 or 4 I/O psychologists to request informational interviews over your next break from classes, take an afternoon off here or there, and go talk with them. Ask them what other professionals they collaborate with. Are there trusted bachelor's and master's level people that support them in their work (and therefor do a lot of it)? And if there are, how would you go about getting qualified to do that sort of thing?

Another thing I've learned is that, out of the jobs and volunteer positions I've had over time, there have been *many* that left me excited and joyful at the end of most days. I kinda thought for a long time that there was only one true profession/calling that each person has, and was surprised to learn that at least for myself, there have been many types of work that I found really fun and fulfilling.

So if plan A turns out not to work for you because it's a bad fit for your available energies, what plan B would be equally fulfilling? Say that over the next year or two, you realize that getting a bachelor's in I/O Psych will be possible, but a doctoral degree looks to be unbelievably painful and/or unlikely. So if that happens, start brainstorming: Are there other interests and dreams that you've set aside to pursue the I/O major which might turn out to be amazing as well? It's tough to have to re-dream one's life after you've been on a path you thought would work, and mourning and grief are definitely part of that process. But if Rome is happiness and fulfillment, then there truly are a multitude of ways to get there career-wise. And otherwise.

Best,
Saraiah

[ZombiePrincess]

Dear Saraiah,

Thank you so much for the kind and very encouraging words. It brought tears to my eyes when I read your response. I don't think it could have been anymore perfect!

I had no idea that the *full* benefits of Xyrem are not usually apparent until we've been on a *clinically effective dose* for 8-12 weeks. I've read all the literature and many testimonials but somehow ended up with the impression that effects were immediate in many cases and with worse-case-synarios, it still only took 2-6 weeks from starting titration. I can't believe I didn't question that last part because it seems so obvious that positive effects wouldn't start showing up until at least finding your appropriate dose.

Regarding school and my career, you are completely right about not jumping to conclusions. Of course you are right! And yet I find myself making rash decisions about throwing in the flag more and more these days. LOL. Sometimes I guess I just feel so overwhelmed that its hard to even imagine that it could one day be better or that the advancements in medical science may even have a "cure" of some sort. But thank you for reminding me that these are very real possibilities. I sincerely appreciate your input more than I know how to express.

[Saraiah]

You're welcome! Anytime. And if you can, my next piece of unsolicited advice is to try to find some more people with narcolepsy and/or IH that live near you, with whom you can meet in person. I know you've got your mom, and it's terrific to have a parent who *really* gets it. And knowing more people living in your particular universe will be even better. I think the worst part of these diseases can be being largely alone with them. For me, once I started meeting other people with these (crappy) diseases, it became a *lot* easier to figure out how to design a life that would work. Let me know if you've got the energy to put some feelers out and want some ideas on how to do it.

[sleepzone]

You're welcome! Anytime. And if you can, my next piece of unsolicited advice is to try to find some more people with narcolepsy and/or IH that live near you, with whom you can meet in person. I know you've got your mom, and it's terrific to have a parent who *really* gets it. And knowing more people living in your particular universe will be even better. I think the worst part of these diseases can be being largely alone with them. For me, once I started meeting other people with these (crappy) diseases, it became a *lot* easier to figure out how to design a life that would work. Let me know if you've got the energy to put some feelers out and want some ideas on how to do it.

Hi Saraiah,
You make a lot of sense to me. I have so much to learn, and your advice was so nice to read. Do you have personal experience with xyrem? My doc. wants to try me on this, I did not know I had to go 3 months for the benefit. I have memory issues and would love to have my mind back!

[Saraiah]

Hi Saraiah,
You make a lot of sense to me. I have so much to learn, and your advice was so nice to read. Do you have personal experience with xyrem? My doc. wants to try me on this, I did not know I had to go 3 months for the benefit. I have memory issues and would love to have my mind back!

I am on Xyrem, and have benefited a great deal from it. Since I saw on another thread that you're having difficulty being alert during the day on the Adderall, I agree with your doc that Xyrem is worth a try. It doesn't work for everyone, and some insurance plans don't cover enough of the exorbitant cost to make it possible to get Xyrem. But for those of us fortunate enough to be able to get it, it often helps to an extent that often no other medication does.

And I wouldn't say that you will have to wait 3 months to see benefits! Some people, myself included, feel noticeably better the first time they take it, even at the sub-clinical dose (maybe due to the placebo effect, but heck, I never turn down the placebo effect when I can get it). And I think most people feel noticeably better once they first reach the dose that's clinically effective for them. It's just also important to know that it's entirely likely that things will continue to improve for the first 2-3 months that you're on that clinically effective dose.

The one downer I have to tell you here is that even with Xyrem plus an effective stimulant, the research shows that a large proportion of those of us with significant memory problems don't see a whole lot of improvement there. Hopefully you'll be amongst those who do experience a lot of improvement!

And if you're not, being awake and alert more of the time helps a great deal in being able to compensate for memory problems. I think it's fair to say that I've got the some of the most severe memory difficulties of any PWN I've met, likely because I've also got post-concussion syndrome. So I've put a lot of energy into learning about how people deal with this sort of problem, figuring out how to improve my ability to learn and remember the most important stuff, and developing systems for myself to compensate for the rest. So let me know if you'd like to chat about that stuff, either now or later...

Best,
Saraiah