It’s the $64,000 question.
Can I have sex with epilepsy, all the AEDs, and side-effects?
The answer is yes.
If you’re willing to be flexible.
According to the EFA: “We do not yet fully understand all the complex causes for sexual problems, especially how they may be related to epilepsy.” (Cop out!)
It’s not unusual for people to have problems with sexual performance at times, and people with epilepsy are no exception.
Sexual dysfunction can be a complex disorder with medical, psychological, and life circumstances all playing a part.
The fact is, up to 43% of all women (nearly a half) and 31% of men (nearly a third) from the general population experience some difficulty maintaining a satisfactory sex life.
So if you or your partner are among them, you’re far from alone.
On the other hand, epilepsy can have effects on sex, and sex has effects on epilepsy.
It can interfere with a person’s self-confidence, body image, and mood, all of which are important when relating with others.
These can be due to the epilepsy itself, the medications used to treat the illness, or due to reactions of partners and others to the diagnosis of epilepsy.
Hormones also play an important role in sexual function and some people with epilepsy have alterations in normal hormone levels.
That may be due to anti-seizure medication-related altered testosterone metabolism and abnormal secretions due to epileptic physiology in the brain.
You may need referral to an endocrinologist to sort out the complex interactions between hormones, seizures, and medications.
Because liver metabolism of sex hormones such as testosterone or estrogen may give an impact upon diminished interest in sex.
But, needless to say, any of the antiepileptic drugs (AEDs) can cause sexual difficulties.
These drugs include:
Carbamazepine (Tegretol, Carbatrol)
Phenobarbital
Phenytoin (Dilantin)
Primidone (Mysoline)
Valproic Acid (Depakote, Depakene)
Barbiturates
However, the reaction to one medication doesn’t mean you’ll have the same experience with another.
Talk with your doctor about trying another anticonvulsant med for your seizures if you suspect this is a part of your sexual problem.
While it is not necessarily something that can be fixed instantly, it is certainly possible that some of the newer antiepileptic medications might be more helpful or that some of the newer medications available for rectifying sexual dysfunction might be of help.
Finding the right balance of seizure control and side-effect reduction is a challenge.
And stopping drugs due to frustrating side-effects might feel like a good solution in the short-term, but doesn’t help reduce seizures and can be dangerous.
And in the long run it won’t help the effects of sexual responsiveness, desire, and arousal.
For men, the main problem is erection problems. For women, lubrication problems as well as orgasmic difficulties, are the issues.
Generally, about half of men with epilepsy note decreased desire.
This is greater for men with temporal lobe epilepsy (63%), as compared to grand mal epilepsy (12%).
Urologists can often help men with sexual problems, including some medications that ease problems with erection.
Viagra (sildenafil) appears to be safe for epilepsy patients and does not interact with antiepileptic drugs.
There is less scientific literature about the effects of epilepsy on women’s sexuality, but the lack of desire is similar for women.
The problems include a low level of sexual desire, difficulty becoming sexually aroused and also intercourse can be painful for some women.
Painful intercourse can be caused by dryness of the vagina or painful vaginal spasms.
Ask your physician about creams or gels for lubricating the vagina to ease any discomfort.
Gynecologists can also do gradual dilations of the vaginal opening for women who have severe problems with pain and spasm.
For most of us sex is an important part of our lives and worrying about our sexual abilities or about our sexual performance can in itself lead to sexual problems.
And lots of people worry unnecessarily about whether or not it is safe to have sex when they have epilepsy or when their partner has epilepsy.
While sexual issues rarely threaten physical health, they can take a heavy psychological toll if they persist too long, bringing on depression, anxiety, and feelings of inadequacy.
The good news is, in most situations, treatment may lead to resumption of normal sexual functioning.
And sex can release anxiety and stress, helping people to relax, and reduce seizure frequency!
Millions of people living with epilepsy, either their own or that of a partner, will happily attest to the fact that their sex lives are just fine.
And having a supportive partner who provides emotional closeness, as well as sexual intimacy, is perhaps the greatest asset in helping people with epilepsy feel positive about themselves, which in turn improves seizure control.
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An article of interest:
Testosterone Tx Needs Clinical Trials http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/45500?xid=nl_mpt_DHE_2014-05-01&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g678262d0r&userid=678262&email=pfjohnson@comcast.net&mu_id=5845719
Resources:
http://www.ncbi.nlm.nih.gov/pubmed/12609320
https://www.epilepsy.org.au/sites/default/files/PDFS/E360/Sep_2010/360_Sep10_P8-11.pdf
https://www.epilepsysociety.org.uk/relationships-and-sex#.WMhAF_nyvtU
https://www.ncbi.nlm.nih.gov/pubmed/16871133
https://www.epilepsy.org.uk/info/men
https://www.epilepsy.org.uk/info/women/sex-life
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About the author
I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.
Be nice if one of the AEDs actually increased desire and function for a change…
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Comment by Doug — August 21, 2017 @ 6:12 PM
Everybody raise your hands, if you agree! 🙂
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Comment by Phylis Feiner Johnson — August 21, 2017 @ 7:04 PM
I have taken up to 13 pills a day for gran Mal prescribed by the epileptic society in kcmo. I am now down to 4 a day and am seizure free for 17 years. I cut my meds down gradually (not recommended) against doctors and neurologists rx amounts due to adverse side effects. Now have a clear mind and more active life. Sex is always an issue however I wonder what it would be if I had followed Dr’s orders.
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Comment by Withheld — August 8, 2018 @ 7:07 PM
Congratulations on weening off your drugs. (Although you know it’s not advisable without a doctor’s care.)
And seizure-free for 17 years. THAT’S something to be proud of.
As for sex, we all do the best that we can do.
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Comment by Phylis Feiner Johnson — August 9, 2018 @ 9:35 AM