Living with Epilepsy
According to the Epilepsy Foundation 65 million people worldwide have epilepsy with 3.4 million of these living in the United States. Since 1 in every 26 people are in the United States develop epilepsy, 150,000 new cases are diagnosed each year. One third of these cases live with uncontrollable seizures because no available treatment works for them. In six out of ten cases, the cause of epilepsy is unknown.
The approval of Epidiolex by the FDA, a CBD treatment that has proven effective in treating two rare forms of untreatable childhood epilepsy, is encouraging news that help might soon be available for many other untreatable forms of the disorder.
Accepting the diagnosis
Learning to cope with epilepsy is just as important as treating it. It affects many aspects of the daily life of the person diagnosed and the challenge is to learn to deal with the emotional aspect, work, and safety.
For many people the diagnosis of epilepsy, like with many other chronic conditions, leads to an emotional rollercoaster and they are overcome with feelings of grief, sadness and anger. They might be tempted to avoid facing the diagnosis, but it is empowering for them to learn about the causes and treatments available.
Since epilepsy is a condition surrounded by many myths and misconceptions, it is very important that these all get cleared up and that the patient is aware of the facts.
One in three people with epilepsy will suffer from depression at some point, and they and the people close to them need to be aware of this and to watch out for symptoms. Treating the anxiety or depression helps offer a better quality of life to the person and those around them.
An important aspect in dealing with the emotional side of epilepsy for any sufferer is to have a medical practitioner that they feel comfortable with. They will need to trust and communicate with their doctor and concerns and progress need to be understood and discussed.
Epileptics suffer physical side effects and they often experience sleep issues and exercise concerns. It is important that they take their medication correctly I order to control seizures. Any changes or stopping of medication should not be contemplated unless they are first discussed with their doctor, as this could lead to serious complications and even death.
Medications often have side effects, while others do not control the seizures effectively. Doctors play an important role in assisting their patients by adjusting dosages or even changing medications. They might opt to add another medication to the ones already prescribed.
If an epileptic is about to undergo surgery, they will have to consult their neurologist about whether the medication is to be taken before and yes, how and when it is to be taken.
Adherence to a medication routine
Strict adherence to the medication regimen is important and if the epileptic is not capable of organizing this then their caregiver has to make sure that that it is done correctly. This is easily achieved by organizing the routine by following these tips.
- Pill organizers are inexpensive and can be purchased at pharmacies. Not more than a week’s supply of pills should be taken out of the original packaging. These should be arranged in the containers according to the day and times that they need to be taken so as to avoid forgetting or mixing the medications. This is a wonderful system because if in doubt about if a certain medication was taken, at breakfast for example, all one has to do is check if the tablet is in the breakfast section for that day or not.
- Keeping a written list of medications and times that they must be taken is also important. This can be used to cross check the organization of the pill boxes on a weekly basis or for those not wanting to keep the pills in boxes, they can just cross off each dosage as take. These lists can be taken with to doctor’s consultations and can help in remembering what medications are taken, which have negative side effects and which are proving more efficient. Any changes of medications or dosages made by the doctor should be adjusted on the list.
- Setting reminders on an alarm or smartphone can help those that are more forgetful; it is difficult to remember to take medication, especially for those who are newly diagnosed and have never had to include this into their daily routine, or for some who have memory issues.
- Since some medications are pricey, any issues of affordability can be discussed with the doctor concerned. There are many pharmaceutical companies that offer discounts according to income and less expensive generic medications are available for many medications that no longer have patents.
- Vomiting or nausea from another cause should be reported to the attending doctor, since that will mean that the medications for the seizures will not be effective. The doctor can organize intravenous medications until the person can take oral medications again.
- It is best to have prescriptions refilled before the medications run out and especially if planning a trip, since they might not be easily found when traveling to remote areas or abroad.
Sleep and epilepsy
Lack of sleep can actually trigger off seizures in many people. That’s why quantity and quality sleep is important. For an epileptic, it is important to prioritize all aspects of sleeping.
Nighttime seizure can affect the daily quality of life resulting in drowsiness during the day. Some medications cause drowsiness, insomnia or difficulties in falling asleep. It is best that the attending doctor is made aware of all these issues since they are manageable, sometimes with a slight adjustment in dosages or a change in medication.
Exercise and epilepsy
Exercise is beneficial for epilepsy and unlike in the past, where epileptics were discouraged from partaking, doctors now insist on it.
The International League Against Epilepsy has drawn up a guideline to help medical professionals who care for people with epilepsy. According to the risk factor, they have three categories of sport and activities suitable in relation to seizure frequency and type.
Once the person decides on the activity allowed, their condition should also be discussed with the coach or instructor and they should be aware of what safety measures should be taken in the event of a seizure during the activity.
Having a social life
Epileptics need to socialize and it is also important that they have contact with others who have the condition. This allows for sharing tips and advice, hearing about how others experience epilepsy and feeling less isolated and alone.
Family and friends also need to be aware of the issue and understanding brings the needed acceptance.
Co-workers should also be aware of this as they will need to know how to deal with the situation of a seizure.
Practical ways to cope with epilepsy
Screen time should be controlled, especially in those with photosensitive epilepsy. The school environment of an epileptic child should be aware of the condition and medications which might need to be take. Epilepsy is sometimes accompanied by other problems such as autism and other learning disabilities.
The home of an epileptic needs to be a safe place. Showers are better than baths and they should be encouraged to sing or talk while showering, so that the rest of the household can know that they are fine. The bathroom should not be locked and it is preferable for the door to swing outwards, making for easier access. Rails and non-slip mats are excellent safety features in bathrooms. The rest of the home should be uncluttered and protective padding should be added to sharp or hard surfaces.
Every person who lives, works or cares for an epileptic should get some basic training in order to be able to provide assistance during a seizure. Since most people panic in this type of situation, it should be printed out and displayed openly. Everyone will then feel less anxious during an emergency.
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