I totally understand the panic disorder - my husband is also afflicted.
Here are some suggestions for behavioral changes you can make that might help improve your alertness..
1) Go to bed and get up at the same time every day. This is what your body wants to do. It works for just about everyone except people who have certain circadian-rhythm-related sleep disorders. I go to bed at 9:15 and get up at 5:15 every day (even weekends). This was a big lifestyle change but really affects my stamina in a positive way during the day.
2) Know your "up" and "down" times, and plan naps accordingly. It can be hard to admit that you might need a nap, but even a short 10-to-15 minute one can help. (Without meds, I could not limit a nap to only 15 mins.. mine would stretch into 2-3 hours.) Keep a little notebook with you for a week and every 30 minutes rate your alertness on a scale from 1-10. Look back through the days of the week to see if there are any times that you are consistently low in energy every day. Try to stave off these times by taking a short nap within the hour before that time (limit it to 10-15 mins). This obviously works best if you are already following #1.
3) Eat a balanced diet, small meals throughout the day. For years when I was feeling tired I would eat or drink something, thinking my blood sugar was low. Hello, I gained 75 pounds in 6 years! Ouch! Follow a balanced diet of 2000 calories or less and divide your meals and snacks throughout the day. Avoid caffeine and things like sugar or high-glycemic-index foods that might give you temporary energy but then make you crash. Some people believe that gluten (an ingredient found in wheat, rye, and barley) might make Narcolepsy worse but there is little to no research to support this at this time. You could also try a food diary where you keep track of what you eat for a week and then see if there are any foods that trigger tiredness.
4) If your other medical conditions permit, exercise at least 3x a week. If you need to lose weight, exercising for an hour each time actually gets you past the "burning food for fuel" stage (which lasts about 30 minutes) into the "burning fat for fuel stage" (which kicks in after 30 mins). If you don't need to lose weight, you might be able to shorten the workouts but definitely get moving. Exercise releases chemicals in your brain that can affect your energy levels. Try to get your workouts done no later than 5 hours before you go to bed, because the lift from exercise can carry into your bedtime making it difficult to go to sleep on time.
5) If for some reason your other doctors order any bloodwork, ask them to order panels on your iron levels and B-12 at the same time. Lack of iron and B-12 (both are called anemia) can cause fatigue. Knowing that you are anemic could allow you to supplement with the right amount of iron and/or b-12 to help with energy too. I wouldn't add iron without the test from the doctor, because too much iron can have negative side effects. However, it's fairly safe to add B-12 as your body will only use what you need and eliminate the rest. Sublingual dots (you put them under your tongue and they dissolve) are the most bioavailable way to take B-12 as it doesn't absorb as well in your digestive tract.
6) Don't drive if you feel tired. Obviously, this is a safety concern. If you are behind the wheel and feel like you can't keep your eyes open, pull over somewhere and sleep! Use your cell phone to set an alarm; again, 10-15 minutes (most have this feature). If you are with someone else, even if you are in your own car, let them know that you do not feel alert enough to drive safely.
7) If you find that you are falling asleep in class or in meetings, sit on the very outside edge of the room. When you feel tired, just stand up. Hopefully being at the edge of the room will allow you to stand without blocking anyone else's view. If you feel self-conscious about it, let the speaker know in advance that sitting for long periods of time is sometimes difficult for you so you may stand up but will try to be non-disruptive.
It's true that the electrodes from the sleep study are somewhat annoying. There are some other options that include home monitoring and something called an activegraph, which are like watches that you wear for a week that capture your body movements. Unfortunately, since they are not taken in a controlled environment, the results aren't always statistically significant or clinically relevant -- but they are options.
2 other tests that are not 100% conclusive for Narcolepsy are a genetic test called HLA typing (blood draw) and CSF hypocretin (lumbar puncture, common called "spinal tap"). HLA typing could indicate if you have a gene that makes you predisposed to Narcolepsy. However, there are people without Narcolepsy that have the gene and people with Narcolepsy that dont have it, so it's not a completely positive correlation. CSF hypocretin measures the amount of a certain chemical in your brain fluid (lack of the chemical causes a disruption in the sleep/wake cycle), but it's a heavy-duty procedure that I don't think anyone enjoys.
There is also an organization called AWAKE in America that donates sleep studies for people who don't have insurance coverage. It's called the "Sleep Study Relief Progarm"
http://www.awakeinam...g/DonateRelief/I will tell you that I was in total denial that my Narcolepsy was affecting my job, but it was. It took one of my employees (imaging that, an employee being brave enough to give her boss criticism) to tell me that when I was physically there I wasn't always mentally "there" along with some other things to prompt me to talk to my doctor about it.
I understand your hesitance. No one can decide to get tested or treated until they are ready. I just want to share with you a few of the things that I missed out on because I wasn't diagnosed or treated for 15 years:
- Flunked out of college the 1st time, still paying student loans 15 years later for classes I slept through
- Completely lost 90% of college friends that I had made because I was too tired for social activities
- Morbid obesity due to lack of activity and thinking I needed to eat when I really didn't
- Depression due to diminished social life, dating life, and tiredness
- Slept through the first 3 years of my marriage, NOT what newlyweds are supposed to do
- Performance at work began to suffer and I did not get a raise this year
Feel free to PM me any time if you need someone to talk to.
Kimberly
Thanks for the reply! I'm not sure my insurance will pay for me to have a sleep study or at least not without massive copays, and with my panic disorder I'm willing to bet I will not be getting a lot of sleep with anything hooked up to my head. I'm a finnicky sleeper at night, everything has to be just so clothing and pillow wise, and I sleep on my stomach. During the day, though, I can sleep in just about anything or any position, lol.
I think I should wait for it to get worse and then go in for my sleep study. =P Then I'll be much more sleepy than anxious and I won't get more anxious because I can't fall asleep. >_< Maybe as long as I can function I should just ignore it until I fall asleep over the copier at work or into my food or something? I think I'm too terrified of them saying "Go home, you hypochondriac, there's nothing wrong with you."... so for my anxiety's sake I want to prove to myself something is really "different" before I ask a doctor. I'm a wimp.
Out of the frying pan...
