Sexual Health and Narcolepsy With Cataplexy: A Male Perspective
Let’s talk about sex, baby
Let’s talk about you and me
Let’s talk about all the good things
And the bad things that may be
In 1990, the duo Salt-N-Pepa released “Let’s Talk About Sex.” Scientific research has never really kept in step. Sexual health training, in general, is limited, with relatively minimal academic research on sexuality.1
Add the fact that narcolepsy affects 1 in 2,000 people and the search for reliable medical information is an exercise in perseverance.
The importance of sexual health
Sexual health is complex and involves interconnected physiological (neurologic, vascular, and endocrine) and psychosocial factors. These psychosocial factors include body image issues, self-esteem, and partner relationships. Add the post-diagnosis grieving process and comorbidities of chronic disease and it becomes even more layered.1
Research shows that sexual health is of high importance to quality of life (approximately 62 percent of men and 43 percent of women). Those in excellent health have significantly higher satisfaction than those in fair to poor health.2
How cataplexy affects sex
Living with type 1 narcolepsy (narcolepsy with cataplexy) involves involuntary loss of muscle tone during intense emotions. Since sex and achieving orgasm can be some of the most intense physical and emotional experiences, they can trigger cataplexy.
The term orgasmolepsy (or orgasmoplexy) is used to describe cataplexy during orgasm and sex. Not all patients with type 1 narcolepsy experience “orgasmolepsy,” but I do.3
Since my teenage years, I have developed mechanisms to avoid cataplexy from manifesting. In particular, I work to avoid losing my legs' ability to support my weight.
Managing emotional triggers
Even before I was diagnosed with narcolepsy, I used approaches to limit excitement to avoid loss of muscle tone. This dates back to my earliest sexual encounters as a teen when I discovered that I dealt with delayed ejaculation. Delayed ejaculation is the postponement of orgasm during sexual encounters. It differs from erectile dysfunction, which is the inability to maintain an erection, which is not an issue that I have dealt with. There is no shame in either medical issue.
Some men with cataplexy have also been found to rarely be orgasmic and for months in my life, I dealt with this issue. This occurred when I was actively avoiding situations that exposed me to emotional triggers to cataplexy.
Most often this occurred with new partners as I gained comfort with the vulnerability that often occurs with cataplexy. The inability to achieve an orgasm is referred to as anorgasmia. It is a consequence of avoiding arousal.4
Strategies for addressing sexual issues
Communication with your partner
The delay in orgasm is a frustration, but one that is surmountable. Communicating with my partner is critical to work through these moments. It took a while to develop the desire and ability to communicate.
Self-awareness, practice, and biofeedback
One strategy I have found helpful has been to be honest with myself about where I am with my sleepiness. If I am physically intimate when I am overly tired, I recognize that orgasm may be delayed or sometimes not possible. Masturbation as a form of practice is a helpful approach. Learning to identify the early signs of orgasmolepsy allowed me to avoid the onset during sexual encounters. Allowing me to achieve orgasm in a more reasonable timeframe before fatigue sets in.
Focus on the partner, mutual satisfaction with orgasms
The true key to enjoyment in my sexual health has been to focus on the pleasure of my partner. Helping to facilitate an orgasm has become as equally rewarding as achieving an orgasm myself. Research shows women have greater satisfaction with an increased quantity of ejaculate and with the intensity of a male orgasm.5 This underlines the importance of communicating about sexual activity and expectations with your partner. Discussing my performance anxieties and frustrations can take away embarrassment during sexual activity. Lengthy performances can be exhilarating, but also exceptionally frustrating for both partners when climax is not achieved.
Behavioral and medical approaches
I use various behavioral approaches (e.g. communicating with my partner) and counseling to address the many factors that affect my sexual health. Medical options are available for guys to address anorgasmia and/or delayed ejaculation through off-label use. Bupropion and cabergoline are the 2 most commonly prescribed.6
Supporting one another
It is my hope that other men who experience these issues or who are worried about future sexual encounters find comfort in knowing they are not alone. While setbacks are inevitable, successful orgasms are possible and most enjoyable. Shame and silence about my insecurities have contributed to the termination of relationships.
Every relationship is not going to work, but my hope is that this blog might improve the sexual health of my fellow males living with narcolepsy and their partners. The World’s Strongest Person having narcolepsy with cataplexy approves this message.
Do you feel that your doctor understands narcolepsy?