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Tuesday, February 15, 2011

I was diagnosed with narcolepsy and it's horrible.I've been on concerta but it doesn't work. I'm still always sleepy and I fall asleep all the time. I just wanted to ask.Will I ever have a normal life again where I can stay awake and alert the whole day?

I'm sorry, I don't know when you asked this question (my alert emails seem to get lost in the shuffle sometimes), so I don't know if anything has changed since you posted it.

I will try to do this as gently and honestly as possible...

No. It is not likely you will ever have a "normal" life again. Even if you find a medication regimen that works amazingly well and keeps you awake all day, it would be extremely unusual to not have lasting effects from past sleep deprivation (after even a short period of time, the body stops bothering to try to catch up on a sleep deficit. So years of sub-par sleep are practically impossible to reverse), and not only do the medications we require have pretty crazy side effects (weight loss, seizures, dental problems, irritability, insomnia), but they are of a type that typically lead to tolerance in every patient at some point...whether within weeks or years.

On the other hand, the positives are this: with proper management, you CAN live a happy, fulfilling life, and you can certainly do everything a "normal" person can do...you just have fewer hours in the day to do it and often have to make some changes to how you do it. For instance, 9-5 jobs tend to be very difficult, but a split shift, second shift, or something you can work from home is usually feasible. Lunch hours tend to be nap hours. Coffee is literally a necessity, not an option, even though others pretend they NEED it. And we have to learn to accept that we can't always go out on Friday night if we want to enjoy our weekend...but with understanding of our symptoms and what makes them worse, we can plan for them.

Also, there is a LOT more research being done on Narcolepsy and treatments. For many people, Xyrem has been a miracle drug. And there are so many combinations of other stimulants out there, you could mix it up for years before finding the right one. I know that doesn't sound reassuring, but allow me to explain a little:

The first time I had medication, it was AMAZING. It was like "OMG, so THIS is what awake feels like?" I realized I never had experienced it. Within a few days, I settled into something slightly less amazing, and within weeks felt worse than I had before. Then I realized that not only was I more aware of my body and my levels of fatigue because of the research and learning I was doing, but there was now a bigger gap between what a "good" day felt like and what a "bad" day felt like. So I wasn't actually feel worse, I just SEEMED worse because of that new "high" I had to compare it to.

I tried several medications, and many people do. There are different brands, different formulas, different strengths. You may need to mix a short acting pill with a long-acting pill for maximum benefit. You may need a sleeping pill on top of a stimulant during the day. You may need to experiment with when to take each dose. Often times, we require a much higher dosage of stimulants than is recommended for other conditions, and doctors will be very cautious about getting to that point. One option (talk to your doctor) is an occasional drug holiday. Don't take your pills for a weekend (with doc's permission) and see if you feel a little better when you finally take them on Monday.

Be sure that you trust your doctor and feel that he or she listens to you. It can be a real wear on you emotionally and physically to feel like he or she is not "getting it" or trying to help.

Also, don't try to compare yourself to "normal" people. You were a unique individual before you found out you had N, and you are a unique individual now. You have to strive toward your own goals and your own happiness, not someone else's.

If you ever need to vent, you know where to find me!
I hope you begin to feel much better soon.

Ask me anything

2 comments:

  1. Thanks for your information.Sleep health is best topic. I can get more knowledge about Narcolepsy. Waitting for your new articles.
    Regards
    James

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  2. As a sign of gratitude on how my husband was saved from Narcolepsy, i decided to reach out to those still suffering from this.
    My husband suffered Narcolepsy Disorder and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from Narcolepsy Disorder. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to Narcolepsy Disorder. I never imagined Narcolepsy Disorder has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one month he was fully okay even up till this moment he is so full of life. Narcolepsy Disorder has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony

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