As many as two-thirds of people with epilepsy face some change in sexual desire, behavior, or activity as a result of their seizures. Even if this kind of problem has affected you, you may not have discussed it with your doctor or someone else who might provide real support and help. Doctors often are reluctant to bring up such intimate topics up in the course of a visit, and many patients do not feel comfortable talking about sex. According to one study, only 13% of epilepsy patients have had a conversation about sex with their doctor. Whatever the reasons behind the silence, there is no need to suffer.
What kind of change is most common?
The most common change is a general lessening of sexual interest and activity, sometimes called hyposexuality.
What are the reasons?
Fear often is an underlying factor in sexual problems. You may believe that you will be rejected if the other person knows you have epilepsy, so you may not even try to establish relationships that could become intimate. If you are hiding your epilepsy from your spouse or partner, that secrecy will create distance between you.
You also may be afraid that sex will provoke a seizure. If you think sex is a dangerous situation, you will enjoy it less and may even avoid it. But in fact, very few people report having a seizure during intercourse.
When you take any kind of medicine, your body begins to function a little differently. You may eat less, sleep more, or feel drowsy, for instance. In the same way, seizure medicines can affect your sex life. Several common seizure medicines, including Dilantin (phenytoin), Tegretol (carbamazepine), and phenobarbital, have been shown to affect hormone levels.1
In men, these medications may reduce the level of free testosterone (the main male hormone). Low levels of testosterone are linked to reduced sexual desire.
In women, these medications may increase the level of luteinizing hormone (LH). Increased amounts of LH can lower sexual drive.
Changes in the brain
Some researchers suggest that certain kinds of damage to the temporal lobe (which frequently occur in partial epilepsy) leave people unable to recognize subtle cues that are part of establishing an intimate relationship. Support for this idea has been found in studies of animals. Primates (animals like apes or monkeys) that had such damage were unable to socially interact as well as others.2 They had difficulty in a wide range of areas, from increased fear in social situations to decreased contact with others.
The jump from primates to humans is a big one, but clearly people with epilepsy often have a difficult time making connections to others. One study of patients with poorly controlled epilepsy found that 68% had no personal friends and over half had never been in a steady relationship.3
Changes in other body systems
Both changes in the brain due to seizures and extended exposure to seizure medicines can affect the way your body functions. In one study, an erotic videotape was shown to men and women with temporal lobe epilepsy and to other adults who did not have epilepsy. The people with epilepsy had a much smaller increase in genital blood flow, a key factor in sexual arousal.4
Men with epilepsy are known to have a greater risk for erectile dysfunction. One survey showed that 57% of men with epilepsy had recently experienced erectile failure, compared to 18% of other men.5
Women with epilepsy are more likely than others to have irregular menstrual cycles, polycystic ovaries, and endocrine disorders involving the reproductive system.6
So what should I do if I have problems in my sex life?
The first step is to recognize the problem. Once you know that it may be caused by something out of your control, it should be easier (and less embarrassing) to admit the problem to others.
Next, you should talk with your doctor. Be sure that the doctor knows about all the medicines you are taking. You may not even realize that your medication is affecting your sexual habits until you have switched to a different medicine. A change of medication could be all that you need. Or you may need to combine that change with some counseling or therapy for the greatest support.
Make sure that the doctor knows that this problem is important to you. If your doctor cannot help you, he or she should know someone who can. You do not need to have an unsatisfying sex life if something can be done to make it better.
1. Lambert MV. Seizures, hormones and sexuality. Seizure 2001 Jul;10(5):319-340. PMID: 11488644.
2. Beauregard M, Malkova L, Bachevalier J. Stereotypies and loss of social affiliation after early hippocampectomy in primates. Neuroreport 1995 Dec 15;6(18):2521-2526. PMID: 8741754.
3. Thompson PJ, Oxley J. Socioeconomic accompaniments of severe epilepsy. Epilepsia 1988;29 Suppl 1:S9-18. PMID: 3391156.
4. Morrell MJ, Sperling MR, Stecker M, Dichter MA. Sexual dysfunction in partial epilepsy: a deficit in physiologic sexual arousal. Neurology 1994 Feb;44(2):243-247. PMID: 8309566.
5. Toone BK, Edeh J, Nanjee MN, Wheeler M. Hyposexuality and epilepsy: a community survey of hormonal and behavioural changes in male epileptics. Psychol Med 1989 Nov;19(4):937-943. PMID: 2512587.
6. Bergen, DC and Hamberger, SD. Sexual problems in epilepsy. In Ettinger AB and Kanner AM (eds): Psychiatric Issues in Epilepsy: A practical guide to diagnosis and treatment. Lippincott Williams & Wilkins, Philadelphia, 2001: pp 331-340.