How does epilepsy impact one’s social life?
Epilepsy is a chronic disorder that may affect how you feel about yourself and your relationship with other people, such as family, friends, or co-workers. Having epilepsy does not automatically mean you will have problems with your social life, although anyone can have emotional difficulties with self-esteem or relationships. People with epilepsy may be embarrassed or fearful about their seizures, and they may have to contend with the ignorance and fear of other people. Some people work through these issues independently, while others may need some help from a nurse or a professional counselor to deal with them effectively.
When should I tell people about my seizures?
It’s your decision when, or if, you tell people about your epilepsy. It isn’t easy to keep this a secret from people you spend a lot of time with or close friends. People can be frightened of situations they don’t understand or can’t anticipate. Most good friends will be supportive and understanding about your seizures, and they may be interested in learning more about epilepsy. However, you may choose not to confide in casual acquaintances, just as you would not share other personal information with them.
How do I tell other people about my epilepsy?
Have a positive attitude about yourself — epilepsy is only a part of who you are and nothing to be ashamed of. Whenever possible, choose a comfortable place and enough time to keep you from feeling anxious or rushed when you talk about your seizures. It may help to have written material available about epilepsy to share. You can contact the Epilepsy Foundation or your local affiliate for further information.
I feel like epilepsy keeps me from leading a normal life.
It’s understandable that you feel that way. Epilepsy does interfere with certain aspects of life for most people who have seizures. Taking medication daily, having regular blood tests, or keeping seizure records is time-consuming and a frequent reminder of a chronic disorder. For some people, there are more difficult restrictions, such as the inability to drive or make certain career choices.
Seizures are unpredictable and may limit some of your independent activities. Other family members and friends may be concerned and overprotective and, as a result, you may feel dependent. Realistically, some people with epilepsy may have to depend on others to help with certain tasks of daily living.
Although common sense precautions may be necessary, it helps to focus on your abilities, rather than defining yourself by your restrictions. Think of creative ways to solve the problems in your life, such as sharing rides with friends, or learning about public transportation options if you can’t drive. Shopping by phone or with a computer may increase your options for independence and control.
Talk with your family and friends about these issues and your feelings. Insist that you need to be involved in the plans and decisions that affect your life. And don’t hesitate to ask for help if you need it, including professional counseling.
My doctor thinks I am overly concerned about my seizures.
It is normal to be concerned about having epilepsy. Prepare carefully for your doctor appointments and be clear about what issues you would like to discuss. Keep written records of your seizures, response to medication, concerns about side effects, and any other questions you have. Take this information with you to appointments to share with your doctor or nurse. It may help to ask for a separate time just to discuss these issues if your physician seems rushed at a regular appointment. Take a friend or family member with you if they can help you share information about your seizures that might help the doctor understand your concerns more fully. You can contact the Foundation for information sheets on a variety of subjects written for health care providers.
You and your doctor are partners in your care. Your physician has the medical knowledge, but you are the expert on yourself. If you are not satisfied with your doctor’s response to your concerns, discuss this with your doctor, and if the relationship does not change, consider choosing another physician. Your local affiliate can provide you with information about health care providers in your area.
When should you tell the person you are dating you have epilepsy?
The most important aspect of telling someone you have epilepsy is that you are comfortable. However, It may be especially important to tell your partner about your seizure disorder so there won’t be any unexpected surprises. Keep a positive attitude about yourself and epilepsy, and they probably will, too. If you need moral support, ask a family member or friend who knows about your seizures, or your physician, to help explain the facts to your partner. Remember that intimate relationships are complicated and may have problems for many reasons. People without epilepsy struggle with these issues, too.
How do I deal with my fear of rejection due to my epilepsy?
People reject other people for all sorts of reasons, their eye color or something they really can’t name. If they decide not to continue your relationship because of your epilepsy, it is not you but rather a lack of knowledge on their part. Also, if you are constantly afraid of rejection, you will begin to see it in places it does not exist.
Sex Life General
What are possible causes affecting my sexual life?
If you are worried about seizing during sex, this can impact your sex life. Likewise, if you are depressed due to epilepsy, this can affect your sex life.
Can I have a seizure during sex?
Having a seizure during sex can happen rarely, but sex does not trigger seizures.
Sex Life Female
Does epilepsy affect my sexual life?
For females, it is unclear. However, we do know that women with complex partial seizures have the most difficulty. We know that women with temporal lobe epilepsy complain that sex is painful for them due to either a dry vagina or vaginal spasms.
What are other possible causes affecting my sexual life?
If you are worried about seizing during sex, this can impact your sex life. Likewise, if you are depressed due to epilepsy, this can also affect it.
How will my seizure medication affect my hormonal birth control?
There are complex interactions between the hormones (estrogen and progesterone) contained in birth control pills or devices, and some of the medications used to control seizures. Some of these medications increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. The seizure medications that have this effect are often called “liver enzyme-inducing” drugs because the liver is the organ that breaks down these hormones. They are carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax). Valproate (Depakote) and felbamate (Felbatol) do not increase breakdown of hormones, and may even increase hormonal levels, which may require an adjustment in the dose of your birth control. Gabapentin (Neurontin), lamotrigine (Lamictal), levetiracetam (Keppra), and tiagabine (Gabitril) have no effect on this system and do not interfere with the effectiveness of hormonal birth control.
What steps can you take if your doctor has prescribed one of these meds?
Ask your doctor about the interaction between your seizure meds and birth control.
Make sure your birth control pill has at least 50 micrograms of estrogen.
In addition to your other birth control, you can use a barrier.
You can also use more long-acting birth control like an IUD.
If you take Depomedroxyprogesterone (Depo-Provera) injections, then take them more frequently than the recommended 12 weeks.
Which birth control meds don’t interact with antiepileptic meds?
Divalproex, valproic acid, sodium valproate (Depakote, Depakene)
Gabapentin (Neurontin, Gralise, Horizant)
Lamotrigine (Lamictal) at doses less than 300 mg daily
Which seizure med is affected by birth control?
When you take birth control and Lamictal, the levels of Lamictal in your blood are lowered by 50 %.
Is there anyway to be sure that I dont get pregnant?
All available birth control methods can be used by persons with epilepsy. These include:
-barriers: diaphragms, spermicidal vaginal creams, intrauterine devices (IUDs) and condoms;
-timing: the “rhythm method” where intercourse is avoided during a woman’s ovulation period or withdrawal by the man prior to ejaculation;
-hormonal contraception: birth control pills, hormone implants, or hormone injections.
Of these, hormonal contraception is the most reliable method for most women, but it is not 100% effective, especially in women with epilepsy. Keep in mind that even in the general population there is always a slight chance of an unwanted pregnancy despite appropriate use of contraceptives.
If you have decided that you never want to have children, you can talk to your doctor about an operation called a tubal ligation. This procedure is the most secure way to ensure that you will never become pregnant. If you are in a monogamous relationship (only one male partner) he can have a similar operation, a vasectomy. This would not protect you from pregnancy with other male partners. These are serious decisions, and you need to think about them carefully before choosing either of these procedures.
How do I know which method is best for me?
You need to work with your gynecologist and your neurologist to choose the birth control method that is most appropriate for you. It is possible that your antiepileptic drug (AED) may make your hormonal birth control less reliable, resulting in an unwanted pregnancy. You and your physicians may consider different combinations of hormonal birth control and seizure medications to find the one that works best for you.
Are there special concerns about "the pill" for women with epilpesy?
Yes, there are. The popular low-dose combined oral contraceptive pill has a relatively small amount of estrogen (less than 35 micrograms). That’s not enough to protect women with epilepsy who take enzyme-inducing AEDs from becoming pregnant. You may need contraceptive pills with higher doses of estrogen, and even then, there is a risk of unexpected pregnancy. It is a good idea to use barrier methods (a diaphragm, spermicidal cream or a condom) in addition to the contraceptive pill, if you are taking one of the seizure medications that speed up the breakdown of the hormones in birth control pills
Are there problems with other forms of hormonal birth control?
Hormonal implants, like levonorgestrel (Norplant) which is placed under the skin, may not provide effective birth control protection if you are taking certain epilepsy drugs. The medications that cause the most problems with Norplant are the “liver enzyme-inducing” seizure medications such as carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax). These antiepileptic drugs increase the rate of breakdown of birth control hormones.
Medroxyprogesterone (Depo-Provera) is a hormonal injection used for birth control and it may need to be given more frequently in women with epilepsy taking medications such as those mentioned earlier.
If you are using one of these forms of birth control, and you take one of the liver enzyme-inducing medications, it is a good idea to use a second barrier method of contraception in addition, such as a diaphragm, a spermicidal cream, or have your partner use a condom.
Are there any warning signals if my contraception is not working?
Breakthrough bleeding while you’re on hormonal contraception, for example during the middle of your cycle, could be a sign that you are ovulating and may become pregnant. If you are using birth control pills, bleeding at any other time than when you switch from the active to the inactive pills may indicate that the pills are not working. If bleeding occurs, ask your doctor to help you select an additional form of contraception such as a diaphragm, spermicidal vaginal cream, or condom. It is important for you to know that hormonal contraception can fail without signs of breakthrough bleeding
Does it matter that my periods aren't regular?
Yes, because it may make hormonal birth control and timing methods more complicated. Usually, irregular menstrual cycles mean that hormones are out of balance in some way. It is important for your gynecologist and your neurologist to know if your periods are irregular so that they can help you choose the best method of contraception. It may be necessary to consult with an endocrinologist, a doctor who specializes in diagnosing and treating hormonal problems.
Will my seizure patterns change if I use hormonal birth control?
Current research does not indicate changes in seizure frequency when women with epilepsy use hormonal birth control, but individual reports suggest they may change. Some women have reported more seizures, some have reported less. If you notice a change in your seizure pattern when you use hormonal birth control, contact your physician.
Sex Life Male
How does having epilepsy affect my sexual life?
Epilepsy can impact a man’s sexual life because it affects his libido (sexual drive).
Why does it affect my libido (sexual drive)?
Antiepileptic medications affect the region of the brain responsible for sexuality and cause inverse effects on the hormones necessary for a sex drive. However, barbituates appear to have the most negative impact on the sex drive.