Diagnosed With Epilepsy. Now what? Your 12 To-Dos Roadmap

Diagnosed with epilepsy now what? Receiving an epilepsy diagnosis can be overwhelming. It affects every aspect of life, from work to relationships. But remember, you're not alone. According to WHO, around 50 million people face this condition. The good news is that effective treatment can make a significant difference. Studies show that approximately 60% of individuals can completely stop experiencing seizures, while another 30% witness a reduction in frequency and intensity. 

This means that with proper treatment, 90% of people can regain control and live a fulfilling life. At Bookimed, we understand your concerns, which is why we've partnered with the world's leading epileptologists to create a practical action plan to guide you through this journey. Together, we'll help you navigate and manage your condition, empowering you to enjoy life to the fullest once again.

Table of Contents

• Find your doctor
• Establish epilepsy diagnosis
• Translate medical documents
• Adhere to epilepsy treatment
• Get a second medical opinion
• Track your seizures
• Join epilepsy communities
• Make your living safe
• Arrange work and education
• Search in new in epilepsy treatments
• Take care of your mental health
• Consider epilepsy treatment options worldwide

#1 Find your doctor and ask all questions

Epilepsy treatment requires a specialized neurologist-epileptologist who diagnoses seizures, prescribes medication, monitors treatment effectiveness, and prevents future seizures.

To ensure expertise, an epilepsy doctor must have additional education in electrophysiology, brain structure and functions, brain pharmacology, antiepileptic drugs, and specialized treatment methods. 

It is crucial for you to find a neurologist who will manage your case, correct treatment plan, and be a person you can trust.

How to find your epilepsy treatment doctor?

You can try to find your epilepsy doctor yourself or with someone’s assistance having epilepsy action counselling. So start your search from:

1. Consult your primary care physician for referrals. It is absolutely possible that they can recommend someone who specializes in your particular seizure types.
2. Seek recommendations from epilepsy support groups or online communities. Real patient experience can be helpful to find a highly-skilled epilepsy doctor. For instance, Bookimed has developed its own epilepsy community where people share their experience, fears, results, and doctors’ contacts as well.
3. Research specialized epilepsy centers in your area and far beyond. You can pick a clinic among these 70+ ones. 
4. Read patient reviews about a specific epilepsy doctor to get insights and know what to expect for.
5. Schedule a consultation to discuss your medical history and treatment approach. Sometimes you need several doctors and consultations to find the right one.

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Remember to trust your instincts and choose a doctor who listens to your concerns and has the expertise to provide the best care for you.

List of questions you should ask your neurologist:

1. What type of epilepsy do I have, and where can I find more information about it?
2. Are there specific triggers for my epilepsy that I should avoid?
3. Will I require medication to treat my epilepsy? What are the available medications?
4. If I need medication, what are the potential side effects? How do anti-epilepsy drugs function?
5. What happens if the medication fails to stop my seizures or if the side effects are unpleasant?
6. What alternative treatments are available instead of medication?
7. What is the best way for me to keep track of my seizures and medication schedule?
8. Can I drive a vehicle?
9. Can I participate in sports?
10. If yes, which sports do you recommend?
11. What precautions should I take while traveling with epilepsy?
12. How will epilepsy impact my social life, and how should I inform people about my diagnosis?
13. How will epilepsy affect my life at school, college, or work?
14. Should I disclose my condition?
15. How can my friends or family assist me during seizures?
16. Are there any epilepsy support groups in my local area?

#2 Undergo epilepsy diagnosis

The success of epilepsy treatment depends on accurate diagnosis. Doctors have found that to choose the best medication, they need to know the specific form, type of seizure, and where it occurs in the brain. Out of the 30 different medications available for epilepsy treatment. And only with accurate diagnostic tests, it is possible to pick the right one for each patient.

According to international research by the American Epilepsy Foundation, 6 out of 10 people become seizure-free with medication. Another 3 people can control their seizures with different treatments after further diagnosis. However, a neurologist needs to ask the “right” questions” to determine all diagnosis specifics in your case:

1. When did the first seizure happen?
2. How long did it last and how did it go?
3. What occurred before the seizure?
4. How did the patient feel after the seizure?
5. How many seizures have there been?
6. At what time of the day do they mostly occur?
7. Was the patient taking any antiepileptic medications?
8. Did the patient's mother experience any delivery complications?
9. Were there any developmental delays in early childhood?
10. Have there been any head injuries?
11. Does the patient have any other nervous system disorders?
12. Is there a history of epilepsy in the family?

According to the international neurological guidances, such methods are used for epilepsy diagnosis:

Neurological examination

A neurological examination evaluates the brain and nervous system. The doctor assesses muscle tone, sensitivity, coordination, and reflexes. They also examine memory and intelligence.

Epilepsy blood test

Blood tests for epilepsy can help rule out infections, allergies, and kidney or liver disorders. They also assist in determining the right medication dosage and monitoring its effectiveness.

Electroencephalography (EEG)

EEG records the brain's electrical activity using scalp electrodes. It shows different waves during rest and seizures. Continuous EEG with video surveillance captures brain activity over several days, helping identify epilepsy form and seizure type.

Neuroimaging

Neuroimaging techniques are used by doctors to create clear images of the brain's structures, tissues, blood vessels, and functional areas. The American Epilepsy Foundation highlights the following techniques:

• Magnetoencephalography (MEG). The device magnetic activity on the brain to detect epileptic focus and seizure spread.
• Brain MRI detects brain damage caused by epileptic seizures and determines the reason for the condition. 
• Single photon emission computed tomography (SPECT). This diagnostic method for epilepsy creates an accurate map of blood flow in the brain. Impaired blood circulation may occur in epileptogenic areas.
• PET measures glucose consumption in different brain regions. In the epileptic focus, glucose metabolism is lower at rest and higher during a seizure. To detect this area, a harmless radiotracer analog of glucose is injected into the patient. The brighter the area appears on the computer screen, the higher the glucose consumption.

Genetic test

Genetic testing for epilepsy is based on a sample of the patient's blood or saliva. Such a study makes it possible to identify gene mutations characteristic of more than 20 hereditary episyndromes.

You can undergo an accurate epilepsy diagnosis in any of the top world’s clinics. All you need is to submit a request on the Bookimed website, and you will receive diagnostic plans with prices from preferred epilepsy centers.

#3 Translate your medical records

One of epilepsy safety advice is to transplate your medical documents. If an epilepsy patient needs to access medical care or travel to another country, it becomes necessary to translate their medical records into English or another required language. This is done for the following reasons:

1. Access to comprehensive medical history. Translating medical records allows a medical center or a doctor to comprehend the complete medical history of the patient. This includes details about the epilepsy diagnosis, previous treatments, medications, and relevant test results. And depending on this, correct your treatment plan.
2. Emergency situations. In the event of an emergency while traveling or residing in another country, having medical records in English is crucial. English serves as a universal language in emergency situations, enabling healthcare providers to quickly grasp essential information. 
3. Non-stop medical care. When moving to an English-speaking country, translating your medical records ensures the seamless continuation of care. Doctors in any country can review the patient's complete medical history, allowing them to understand the condition and provide appropriate treatment options without delays or miscommunication. 
4. Availability of scientific research.If you want to participate in clinical trials, research studies, or collaborations with international medical professionals, medical records in English may be necessary. This allows individuals with epilepsy to contribute to advancements in the field and benefit from research opportunities.

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#4 Get a second medical opinion

Second medical opinion is an option when a patient can get a consultation with one or more doctors to:

• Check treatment plan adequacy. Epilepsy is a complex neurological disorder, and there is no one-size-fits-all treatment. Experienced doctors are essential in determining the most effective therapies that can yield remarkable results.
• Confirm the diagnosis. Epilepsy diagnosis can sometimes be challenging and may rely on subjective interpretation of symptoms and diagnostic tests. In 23% of cases, epilepsy is misdiagnosed. Obtaining a second medical opinion can help confirm and revise its accuracy. 
• Boost your treatment efficacy. During a consultation, a doctor may correct your treatment, which will become more effective in your case.
• Be mentally peaceful. Obtaining an epilepsy diagnosis can be a source of stress and uncertainty regarding its accuracy and the effectiveness of the treatment plan. In such cases, seeking a second medical opinion can provide valuable insights to determine if you are on the right path.

Bookimed provides a “Second medical opinion” service, so you can have a consultation with any of these TOP epilepsy doctors. Bookimed can arrange online or offline consultation. During it, you will get:

• Revision of your medical documents.
• Checking your treatment plan adequacy and its correction.
• Recommendation on further treatment and diagnostic tests if needed. 

Pick the best option for epilepsy diagnosis and treatment:

#5 Adhere to epilepsy treatment plan

Epilepsy treatment plans are typically established according to deep diagnosis. There are no universal therapies. So all epilepsy treatment is picked individually, and a patient needs to strictly follow it to manage seizures. This is one more epilepsy safety advice. There are most common options applied for epilepsy treatment:

1. Medication. Most people with epilepsy can achieve seizure freedom by taking one anti-seizure medication. Some may require a combination of medicines to reduce seizure frequency and intensity. Finding the right medicine and dosage can be complex and depends on factors such as your condition, seizure frequency, age, and other health conditions. There are over 30 different types of anti-seizure medicines available, and it is crucial to pick the one for specific seizure type and individual factors. If initial medication does not provide satisfactory results, other treatment options such as surgery or alternative therapies may be considered.

   Discover a 1.5-year old Yaroslav's success story with improved seizure control through personalized medication. Under the care of Prof. Antonio Russi, the treatment plan was adjusted, resulting in seizures occurring only during fever episodes.

2. Surgery. Epilepsy surgery is an option when medications fail to control seizures. The surgeon removes the seizure-causing area in the brain, usually when it's small and well-defined and doesn't affect vital functions. Minimally invasive techniques like MRI-guided stereotactic laser ablation can be used for certain types of epilepsy. Successful surgery may reduce the need for medication, but potential complications should be discussed with the surgical team.
3. Vagus Nerve Stimulation (VNS). This option is used when medications fail to control seizures and surgery is not possible. A device called a vagus nerve stimulator is implanted under the skin of the chest, similar to a heart pacemaker. Wires connect the stimulator to the vagus nerve in the neck. The device sends bursts of electrical energy through the vagus nerve to the brain, reducing seizures by 20% to 40%. While most people still need to take anti-epileptic medicine, some may be able to lower their dosage.
4. Deep Brain Stimulation (DBS). It involves implanting electrodes in a specific brain region, usually the thalamus. These electrodes are connected to a generator implanted in the chest, which sends regular electrical pulses to the brain. This treatment is commonly used for individuals whose seizures do not improve with medication.
5. Ketogenic Diet. A ketogenic diet, high in fats and low in carbohydrates, has shown effectiveness in reducing seizures for some individuals with epilepsy when medications are not effective. The diet involves breaking down fats instead of carbohydrates for energy. It may be followed for a few years, under close medical supervision, with the potential to achieve seizure freedom.

#6 Track your seizures

One more epilepsy safety advice is to track your seizures. For this, you can use written notes, calendars or special seizure epilepsy apps available at AppStore or Play Market. This approach helps:

Diagnosing seizures

• Recording seizure details helps doctors determine if the events are indeed seizures and identify the seizure type.
• Knowing the seizure type enables proper response, understanding of potential concerns, and knowing when to seek emergency assistance.

Choosing treatments

• Different seizure medicines are effective for different seizure types and epilepsy syndromes.
• Tracking seizure information aids in selecting the most suitable medicine or treatment.

Assessing treatment efficacy

• Monitoring seizures allows you to evaluate if seizures occur less frequently or change after starting a new medicine or treatment.
• If seizures persist or worsen, this data helps determine the need for alternative treatments.

Managing side effects

• Keeping a record of medication side effects on seizure calendars helps assess tolerance.
• By observing if side effects improve or worsen over time or with dosage adjustments, informed decisions can be made regarding treatment options.

dentifying triggers and lifestyle modifications

• Documenting when seizures occur and the surrounding circumstances helps identify potential triggers.
• Patterns such as specific times of the day or certain factors coinciding with seizures (e.g., poor sleep, illness, stress, missed medications) can be recognized.
• This information empowers individuals to make necessary lifestyle changes and achieve better seizure control.

#7 Join epilepsy treatment communities

For patients with epilepsy, it is one useful epilepsy tips to find and share experience, treatment, and achievement. It influences mental and physical health. Joining epilepsy communities offers valuable benefits for patients:

1. Support and understanding. Connect with others who share similar experiences and can provide empathy, advice, and emotional support.
2. Knowledge sharing. Gain insights on seizure management, treatment options, lifestyle adjustments, and coping strategies from community members. You can also find contacts of top doctors and how they manage epilepsy treatment.
3. Access to resources. Stay updated with the latest research, treatment advancements, and informative materials related to epilepsy.
4. Advocacy and awareness. Contribute to reducing stigma, raising awareness, and advocating for improved healthcare and support services.
5. Emotional well-being. Find a sense of solidarity, express emotions freely, and receive encouragement and motivation from the community.

Join the Bookimed epilepsy community at Facebook where patients share their experience, doctors’ contacts, and treatment plans.

#8 Make your living safe

Your safety depends on how your living space is adapted to possible epilepsy seizures. Especially when a patient with epilepsy lives alone. Here are some practical epilepsy tips and advice allowing to arrange your space safe:

General

1. Opt for carpet or soft flooring materials instead of hard surfaces to minimize the risk of injury in case of a fall during a seizure.
2. Create ample space in your home by avoiding excessive furniture. This provides a larger area for movement during a seizure, reducing the risk of collision and injury.
3. Use protective plastic or padded covers on furniture handles, corners, benches, and fittings to minimize the impact of falls and take a proactive approach to create a safer environment.
4. Remove or avoid using rugs that can increase the risk of trips or slips, and opt for safer flooring options.
5. Avoid glass dining tables or coffee tables that could pose a risk of injury if shattered. Ensure that mirrors are made of shatter-proof glass to prevent accidents.
6. Use electrical equipment like hairdryers or electric razors away from water sources to prevent electrical accidents.

Bathroom

1. Fit bathroom and toilet doors that open outward to ensure access in case of a fall or blocking the door during a seizure.
2. Taking a shower is safer than having a bath to minimize the risk of drowning during a seizure. Use a shower chair to sit down while showering for added stability.
3. Avoid using very hot water in the shower. Test the temperature with touch before stepping in. Consider using a control with a temperature cut-off feature to prevent burns.

Bedroom

1. Consider using a low bed, mattress on the floor, or a futon to minimize the risk of falling out of bed.
2. Keep furniture and hazardous objects away from your bedside to prevent injury during seizures.
3. Consider installing a monitor in your bedroom so that someone in the house can hear you during a seizure and provide assistance if needed.

Kitchen

1. Purchase pre-cut packs of fresh vegetables and ask butchers to cut meat to your requirements to minimize the need for chopping and handling sharp objects.
2. Consider using a microwave instead of a stove or oven, as they automatically turn off after cooking, reducing the chances of physical burns or fires.
3. Opt for an electric stove instead of a gas stove to eliminate the risk of an open flame.
4. Use plastic containers and dishes instead of glass ones to reduce the risk of breakage and potential injuries.
5. Choose a cordless kettle with an automatic switch-off feature and a "locking" lid to prevent hot water scalding accidents.

#9 Arrange your work and education

If you are an employee with epilepsy or your child suffers from this condition, it is necessary to arrange safe space at work and school. Here are some tips:

1. Open communication. Maintain open and honest communication with both your school and workplace regarding your epilepsy. Keep them informed about your condition, medication, and any specific needs or accommodations.
2. Educate others. Ensure that teachers, colleagues, and supervisors have a basic understanding of epilepsy. Provide them with information on how to recognize seizures, appropriate first aid measures, and any specific actions they should take during a seizure.
3. Develop a seizure action plan. Create a seizure action plan with your doctor that outlines steps to take in case of a seizure. Share this plan with relevant individuals in your school and workplace, including teachers, supervisors, and colleagues.
4. Request reasonable adjustments. If necessary, ask for reasonable adjustments at school and work to support your epilepsy. This could involve flexible work hours, modified job tasks, extra breaks, or alternative transportation options.
5. Safety measures. Take proactive steps to enhance safety, such as using non-slip flooring, organizing your workspace to minimize potential hazards, and avoiding situations that could increase your risk of injury during a seizure.
6. Share contact information. Provide them with important contact details, including your emergency contacts, healthcare provider, and any relevant medical information that can assist in managing a seizure-related emergency.

#10 Be educated and monitor new epilepsy treatments 

Improved Treatment Options: Epilepsy treatment approaches have evolved significantly over the years. New medications, therapies, and surgical techniques have emerged, offering better seizure control and improved quality of life for people with epilepsy. Staying informed about these advancements allows individuals to explore potential treatment options that may be more effective or have fewer side effects than previous treatments.

Example. In recent years, the introduction of new antiepileptic drugs (AEDs) such as Brivaracetam and Cannabidiol (CBD) has provided additional choices for patients whose seizures were previously uncontrolled by traditional medications. These new medications have shown promising results in reducing seizure frequency and improving overall seizure management.

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#11 Take care of your mental health

Studies suggest that people with epilepsy are 2-3 times more likely to experience anxiety and depression compared to the general population. 

However, psychological therapies, such as counseling or psychotherapy, can be effective in managing anxiety and depression in people with epilepsy. These therapies provide a supportive environment to address epilepsy-related concerns and develop coping mechanisms. 

It is also crucial to maintain open and honest communication with healthcare providers regarding mood and mental health concerns. Discussing these issues allows for appropriate support, guidance, and adjustment of treatment plans if necessary.

#12 Consider epilepsy treatment options worldwide

Effective treatment and diagnostics of epilepsy may be not availavle in your country. So, it is necessary to you look for such top-notch options worldwide. Check some of these below and submit a request to get more details: