6 replies to this topic

[deoir]

I'm having trouble staying positive... I mentioned this in a reply to someone else's topic, but I'd also really like to get some input/encouragement, please. I'll try not to write a book but I need to explain some stuff so you guys get an idea of what's happening at work.

I was diagnosed with IH a month ago. It got out of control in the last few months because I lost my mother. I was sleeping 10-12 hours a day but still felt sleepy and I had SP once or twice a week, causing me to miss school. On the bright side, I finally found out why I've felt so tired for the past 10 years!

I'm in grad school and expected hours are 10hrs M-F, and a few hours on Saturdays. More is of course highly preferable. At my worst point, I'd work 5-6 hours every weekday then make myself go through 12-15 hours once a week or every 2 weeks, especially if I missed a day of lab from not being able to wake up. I also did 24hrs straight a couple of times just to meet deadlines. My boss wasn't happy with my hours and I understood why. I realized that I had a problem and I explained it to my boss. He encouraged me to get a dx.

Finally found a PCP who cared about his patients and as soon as he heard my symptoms, he thought of N and immediately sent a referral to a neurologist/sleep specialist. Awesome n/ss ordered PSG and MSLT and returned dx of IH (but thinks it's N) and I picked up Nuvigil right after.

I LOVE Nuvigil because I can finally keep my eyes open even when reading boring science papers for hours! But I've had increased anxiety and a couple of panic attacks that kept me from school. I essentially had 2 responsibilities: 1) keep running experiments in lab and 2) write a 20 page proposal for my PhD qualifying exam. Most bosses allow students to just write without worrying about experiments, but my boss has higher standards. Anyway, because of the panic attacks, I figured I'd focus exclusively on the proposal. My boss was away for a few weeks and when he came back, he wasn't happy. I explained about the attacks and he suggested that I should quit grad school because of my health. He told me that he doesn't have confidence in me finishing because I'm not working as hard as other students.

He's been a great boss so far. When my mother passed away, he let me take a couple of months off to be with my family, no questions asked. He's also sympathetic about my IH but in his mind, it means that I won't be able to survive grad school.

I thought of asking for a couple of months of unpaid leave to adjust to my med but I'm also thinking that it's too much to ask for. I've prided myself on being a fighter all these years, but I'm starting to doubt myself and I'm seriously wondering if he's right.

[Megssosleepy]

I would suggest finding another Stimulant? There are so many options out there that you should be able to find one that doesn't make you have panic attacks. Nuvig. seems to be the one the drs start with because it works well for many people and is the "newest" med. I had a massive panic attack that lasted a really long time when they first tried it on me. Ive also tried a handful of others... I recently went back to old school Adderal... I like it, because I control how much I want at what time. Lazy Sundays I just take some in the am. Work days I normally take all 3 doses.

The long lasting pills seem to create more anxiety for me... maybe its the same for you.

It is a shame that its hard for others who do not have N to really understand, but how can they. Your boss seems like a good guy. Don't give up! Keep working hard, and try to find a better drug. If you have been pushing yourself before having a diagnosis, why stop because you know! Let it give you strength... you have gotten this far and now you have answers, meds, and support!

[deoir]

I would suggest finding another Stimulant? There are so many options out there that you should be able to find one that doesn't make you have panic attacks. Nuvig. seems to be the one the drs start with because it works well for many people and is the "newest" med. I had a massive panic attack that lasted a really long time when they first tried it on me. Ive also tried a handful of others... I recently went back to old school Adderal... I like it, because I control how much I want at what time. Lazy Sundays I just take some in the am. Work days I normally take all 3 doses.

The long lasting pills seem to create more anxiety for me... maybe its the same for you.

It is a shame that its hard for others who do not have N to really understand, but how can they. Your boss seems like a good guy. Don't give up! Keep working hard, and try to find a better drug. If you have been pushing yourself before having a diagnosis, why stop because you know! Let it give you strength... you have gotten this far and now you have answers, meds, and support!

Thanks for the encouragement! You're right, I have to keep trying!

Doc doesn't want to switch me to a traditional stimulant for now because they're associated with a higher risk for anxiety. He knows I'm stressed so he's worried I'll wig out even worse if I switch now. He suggested reducing my stress levels first.

[purpley]

Thanks for the encouragement! You're right, I have to keep trying!

Doc doesn't want to switch me to a traditional stimulant for now because they're associated with a higher risk for anxiety. He knows I'm stressed so he's worried I'll wig out even worse if I switch now. He suggested reducing my stress levels first.

Hope you're still hanging in there! Taking covert breaks for naps is always a good way to get through long days. You have to really force yourself to do it and schedule it into your day, e.g. "3-3:30p, Nap in library." If you don't, you'll end up zoning out or falling asleep anyway. Also, make sure your panic attacks aren't hypoglycemic episodes. I was misdiagnosed with those in grad school and it turned out that it was because I was so stressed and busy I'd skip meals...then would get tremulous, tearful, and anxious. When I started making sure I ate every four hours, and stopped eating breakfasts that were 98% carbs, they disappeared.

If you're really having problems, find your school's ombudsman, who's a non-partisan person to help resolve any problems between students and staff -- they don't take anyone's side, they're just there to let you sound off and help you communicate better with your boss, among other things. It's a good way to reach out for help. If things are really bad, don't forget, IH or N is a disability, which means the school (with some exceptions) has to make reasonable accommodations for you. Your school should have a disabilities office and you can speak with someone there about getting accommodations, e.g. allowances for taking naps during the day, and so on.

[LauraL]

This story remind me a lot of my grad school experience, which was only a few years ago. I wasn't diagnosed with narcolepsy (that was this year), but I was diagnosed with clinical depression / OCD, and it was tough. Are you, by chance, in the sciences? I don't know if it's like this in other fields, but I did feel like there was some element of "if you can't keep up, you shouldn't be a scientist," which is absurd. Science is not a field that requires superhuman stamina (being a tenured professor at the kind of large research school I went to may well have been--but there are lots of places for scientists to work!).

A couple of things:

1) I started narcolepsy about four or five months ago. It's also been very effective for me! Anxiety is a common side effect. I knew that, I knew it would be unpleasant, but my doctor thought there was a really good chance it would lessen over time. Since I already had anxiety issues (OCD is an anxiety disorder), I knew it might get ugly. And, I have to tell you, the first month was not fun. But it gradually got better, and I feel like I did before--my anxiety/OCD is well-managed. Also, if after a few months on the nuvigil, the anxiety does not go away, there may be something they can do medically to help with that. Ask your neurologist, or perhaps he/she will refer you to a psychiatrist. I've never had panic attacks, but I understand they can be successfully treated! I also took yoga and meditation classes at my university when I was diagnosed with OCD, and that helped a lot. It was nice to have had all that "how to cope with anxiety" experience under my belt when the nuvigil side effects came on, because even though I would frequently have the urge to punch my coworkers in the face , I knew how to talk myself down and calm myself.

2) Find the office at your university that assists students with disabilities. Narcolepsy qualifies as a medical condition under the Americans with Disabilities Act. Not to say that you or I or anyone else is "disabled" by it, but employers are required by law to provide "reasonable accommodation." In my case, this has meant working scheduled naps into my workday (purpley is so right! if I don't schedule them, they don't happen... and these little power naps are so helpful!). Make an appointment to go talk with a counselor or someone in that office. They can explain what your rights are, and what your professor's responsibility, etc. Not that you want to go stomping into his office reading him the riot act, but if you know what your legal rights are, that can be helpful.

3) It's absolutely not too much to ask to take an unpaid leave while getting medical issues under control. Under FMLA (family and medical leave act... I think) you're entitled to take a medical leave of absence without losing your job. It's even partially paid. If you're being paid as part of a graduate assistantship, I'm not sure how that works, and if FMLA applies... but perhaps there's something in your university policies about medical leaves. The office for students with disabilities can probably help with that info, too.

4) It's weird to me that your professor is so understanding of personal situations on the one hand, and yet rather un-understanding on this one. It makes me wonder if maybe he just really doesn't know too much about narcolepsy, or has never had experience with someone managing a chronic illness and yet finding professional success. You might need to be the one to educate him about this. Hopefully your doctor or a school counselor can help you navigate this. I had a really fantastic graduate research advisor--he really did care, and was so super helpful. He was German, and he was rather the stereotypical German scientist--a little reserved and standoffish. A very kind man, really, but not all warm and fuzzy. When I told him about the depression/OCD that I was navigating, he was concerned, but he had no idea how to help me. He would ask things like, "Do you want to skip this research trip if you're not feeling well?" And no, I absolutely did not want to skip the research trip, I just sometimes needed extra time to run my data--and sometimes I didn't. He may really be willing to accommodate what you need once he understands a) what it is and that eventually you're going to get into a routine that really works for you, and then your productivity won't be as sporadic.

And you absolutely will. Hang in there! Find out what resources you have at your university and let them help you learn how to advocate for yourself! And keep us posted!

[LauraL]

run my data--and sometimes I didn't. He may really be willing to accommodate what you need once he understands a) what it is and that eventually you're going to get into a routine that really works for you, and then your productivity won't be as sporadic.

And you absolutely will. Hang in there! Find out what resources you have at your university and let them help you learn how to advocate for yourself! And keep us posted!

That was supposed to be in a list form: a ) and b )

But now I know that "b" and ")" makes a smiley face with sunglasses:

[mustangashley]

I have one of those bosses as well. I tried to educate my boss about narcolepsy. It depends on how open minded your boss will be to understanding an illness that can be quite invisible to him. I can say from personal experience educating my employer didn't help my situation. I educated my employer and provided them with other resources to educate themselves such as the Narcolepsy Network web address. One of the most difficult task I have faced with N is getting others to really understand what I go through everyday. There are still people in my family who fail to understand and empathize. I have finally stopped trying to make them understand. My energy is very precious to me and I must choose wisely how I use it. I finally stopped worrying about the people in my life who do not want to understand my condition. Most importantly, do not let someone who is not educated about your condition tell you what you CANNOT do. There are many scientists who suffer from narcolepsy. Personally I hope you take his comment and let it fuel your fire to succeed.