Patient Comments: Narcolepsy - Treatments

Question:What was the treatment for you narcolepsy?

Comment from: areyouawake, 65-74 Female (Patient) Published: February 08

I have been taking Xyrem for five years and it changed my life. The RX states I can use it twice a night, but doing so (the first 2 weeks) gave me hypertension and my skin itched & felt dry. I go to bed and fall asleep, but wake up in about 2 hours. Then I take my dose and have a deep sleep of about 3 hours. Then I wake up to get to the bathroom, get back in bed and usually can sleep another couple hours. I still have to use Ritalin, usually four 10mg tabs throughout the day, but I think I have some degree of ADD too.

Comment from: Louise, 45-54 Female (Patient) Published: July 19

I am due a short hospital stay for various sleep studies to confirm I have Narcolepsy. In the meantime I have been prescribed Modafinil (100mg currently) and am delighted with its results. As a Nurse in Out-patients I have fought the symptoms of Narcolepsy most of my working life (33 years) To now sit in a clinic without the fear of falling asleep in front of patients is life changing! Throughout my earlier life I tended to blame my symptoms on lifestyle (out late, or in later years, disturbed nights with children). There is help out there so I urge you to persist with your GP. Insist on an Epworth study if you're struggling with diagnosis. We Narcoleptics are worthy of the best care.

Comment from: NLM, 55-64 Female (Patient) Published: February 25

I only have 1/2 of my pituitary gland after removal of a pituitary adenoma. Narcolepsy is one of many things that started after the surgery. I was getting occipital headaches; these were worse upon waking up. I was referred to fertility endocrinologist that has seen this symptom with many women trying to get pregnant with only 1/2 of a pituitary gland. He did a water test to confirm "idiopathic edema" and prescribed Dexedrine. I found this also helped with Narcolepsy in addition to the occipital edema. I also take Nuvigil if I need to drive more than 15 minutes.

Comment from: shaylenelk, 19-24 Female (Patient) Published: November 05

I was diagnosed with Narcolepsy about 5 years ago (I am now 24), and am taking Modafinil 400mg in two or three dosages/ day depending on whether or not I want to stay up late. I have also found that having a cup of coffee first thing in the morning along with one pill will keep me going until my lunch break, which I will then have a 5 to 15 minute nap. I also experience Cataplexy and have tried to eliminate major stress factors in my day-to-day life, because if I do not, my day will be a write off. Dealing with Narcolepsy and Cataplexy can be depressing, embarrassing, and frustrating but at the end of the day, it's the card that I have been dealt and have found that implementing a daily routine including naps has played a major factor into improving my quality of life.

Comment from: lilybell, 35-44 Female (Patient) Published: June 01

The first 10 yrs after I was diagnosed I took Ritalin, until I developed a skin allergy. It helped some with the sleepiness. Next was Wellbutrin which I guess took care of the depression and some of the sleepiness but I'd say only helped about 40% of it. I tried Provigil and I had stomach problems and didn't feel any improvement. I am currently still taking the Wellbutrin (150 mg twice a day) plus Nuvigil was added. At first I had severe headaches and I stopped taking it but then I tried it again and had no headaches and so far seems to be the medication that has helped me the most with the sleepiness. I'm taking 1 1/2 pills a day. I'm very pleased with it but, I still get sleepy sometimes, especially after driving for about 15-20 min. Still looking for the medication that will control my sleepiness 100%.

Comment from: G., 45-54 Female (Patient) Published: May 23

My treatment for narcolepsy was Nuvigil but I can't afford it so I am taking Provigil and adding Methylamphetamine in between 2x per day.

Patient Comments

Viewers share their comments

Narcolepsy - Experience Question: Share your experience with narcolepsy.
Narcolepsy - Excessive Daytime Sleepiness Question: If you've been diagnosed with narcolepsy, please discuss your experience with daytime sleepiness.
Narcolepsy - Hypnagogic Hallucinations Question: Describe what a hypnagogic hallucination is like for you, a friend, or relative.
Narcolepsy - Muscle Control Question: Relate your observations of cataplexy (loss of muscle control) in a friend or relative.

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