Please give me some advice regarding my epilepsy

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Hi, after 5 years of having problems such as being exhausted, lack of coordination, sensitivity to light, difficulty concentrating and feeling pressure in my head I was finally told to undergo an EEG examination to find out if there is something wrong with my brain. I did undergo 4 EEG sessions and every EEG result was bad. The doctor even showed me a graph of my brain actiivity - as usual there is approximately 10 almost straight lines but in each of the line there was a huge crack in the middle. One doctor told me I suffer with *mild form of epilepsy* and the second doctor told me i suffer with children-like epilepsy. There is a rough sketch of my EEG graph result: -------------------------V----------------------------- -------------------------V---------------------------- -------------------------V----------------------------- -------------------------V---------------------------- (the V symbolizes the crack which tells that there is something wrong with my brain) I have never had a seizure in my life, and i thought epilepsy is always connected with seizures. I never lose consciousness or anything. I just have the symptoms listed above. Do you think I still have to take medication or there is a different way how to treat this? Is it even epilepsy? Or what type of epilepsy? It seemed like the doctors were not exactly sure how to call it. Thanks in advance and have a good day

Comments

Note: Im 22 years old, the

Submitted by Verennes on Sat, 2020-05-09 - 05:29

Note: Im 22 years old, the problems started when i was 15 years old

Hi, I am not a doctor but I

Submitted by birdman on Sat, 2020-05-09 - 22:24

Hi, I am not a doctor but I've had epilepsy all my life (>50 yrs). First off I'm not sure what you mean that "every EEG result was bad". For me a "bad" EEG would be one that showed no sign or gave an explanation of what I feel once in a while when I have a seizure. Much of the time we who have these hard to describe and hard to explain events are glad to have an EEG with seizures that help to indicate it is real. It sounds like you are disturbed by the "crack" in the graph. I'm pretty sure those sharp "v's" are what they call spikes. People with epilepsy often have these abnormal spikes on their EEG which as I understand are not seizures, but they suggest the person is prone to having seizures. I was often disappointed as a child when I did not have a seizure in my EEG. Will the doctor believe me if the test did not show seizures? But my tests did have spikes which supported what my mom and I shared with the doctor. This helped confirm my diagnosis of epilepsy. You wrote that you never had a seizure in your life and thought epilepsy is seizures. It is a common misunderstanding that a person who has epilepsy will have seizures. But around 75% of patients with epilepsy get full control of their seizures with medication. Also many people think that a seizure is a convulsion or "grand mal" that includes falling to the floor and violently shaking. There are many seizures that do not result in the dramatic events. Read more about seizure types https://www.epilepsy.com/learn/types-seizuresOne kind that I have results in a short (few seconds) and mild sensation that are hard for me to recognize. Only when they are captured on EEG was a doctor able to confirm they were seizures. But without medication these mild seizures or "auras" can progress into the bigger events or lead to "impaired awareness". So yes it is probably good to continue the meds. Of course you need to discuss this with your doctor. Thank you for visiting this site and sharing your important and reasonable questions.Mike

Hi, I am not a doctor but I've had epilepsy all my life (>50 yrs).  First off I'm not sure what you mean that "every EEG result was bad".  For me a "bad" EEG would be one that showed no sign or gave an explanation of what I feel once in a while when I have a seizure.  Much of the time we who have these hard to describe and hard to explain events are glad to have an EEG with seizures that help to indicate it is real.  It sounds like you are disturbed by the "crack" in the graph.  I'm pretty sure those sharp "v's" are what they call spikes.  People with epilepsy often have these abnormal spikes on their EEG which as I understand are not seizures, but they suggest the person is prone to having seizures.  I was often disappointed as a child when I did not have a seizure in my EEG.  Will the doctor believe me if the test did not show seizures?  But my tests did have spikes which supported what my mom and I shared with the doctor.  This helped confirm my diagnosis of epilepsy.  You wrote that you never had a seizure in your life and thought epilepsy is seizures.  It is a common misunderstanding that a person who has epilepsy will have seizures.  But around 75% of patients with epilepsy get full control of their seizures with medication.  Also many people think that a seizure is a convulsion or "grand mal" that includes falling to the floor and violently shaking.  There are many seizures that do not result in the dramatic events.  Read more about seizure types https://www.epilepsy.com/learn/types-seizuresOne kind that I have results in a short (few seconds) and mild sensation that are hard for me to recognize.  Only when they are captured on EEG was a doctor able to confirm they were seizures.  But without medication these mild seizures or "auras" can progress into the bigger events or lead to "impaired awareness".  So yes it is probably good to continue the meds.  Of course you need to discuss this with your doctor.  Thank you for visiting this site and sharing your important and reasonable questions.Mike

Hi, I am not a doctor but I've had epilepsy all my life (>50 yrs). First off I'm not sure what you mean that "every EEG result was bad". For me a "bad" EEG would be one that showed no sign or gave an explanation of what I feel once in a while when I have a seizure. Much of the time we who have these hard to describe and hard to explain events are glad to have an EEG with seizures that help to indicate it is real. It sounds like you are disturbed by the "crack" in the graph. I'm pretty sure those sharp "v's" are what they call spikes. People with epilepsy often have these abnormal spikes on their EEG which as I understand are not seizures, but they suggest the person is prone to having seizures. I was often disappointed as a child when I did not have a seizure in my EEG. Will the doctor believe me if the test did not show seizures? But my tests did have spikes which supported what my mom and I shared with the doctor. This helped confirm my diagnosis of epilepsy. You wrote that you never had a seizure in your life and thought epilepsy is seizures. It is a common misunderstanding that a person who has epilepsy will have seizures. But around 75% of patients with epilepsy get full control of their seizures with medication. Also many people think that a seizure is a convulsion or "grand mal" that includes falling to the floor and violently shaking. There are many seizures that do not result in the dramatic events. Read more about seizure types https://www.epilepsy.com/learn/types-seizuresOne kind that I have results in a short (few seconds) and mild sensation that are hard for me to recognize. Only when they are captured on EEG was a doctor able to confirm they were seizures. But without medication these mild seizures or "auras" can progress into the bigger events or lead to "impaired awareness". So yes it is probably good to continue the meds. Of course you need to discuss this with your doctor. Thank you for visiting this site and sharing your important and reasonable questions.Mike

Hi,Thank you for posting and

Submitted by Anonymous on Mon, 2020-05-11 - 09:08

Hi,Thank you for posting and for sharing your story. We are not able to interpret your EEG results. It’s best that you to reach out to your healthcare team for further explanation and if you continue to experience these episodes that you describe or experiences any changes in mood, behavior or symptoms. To learn more about EEG readings, please visit: https://www.epilepsy.com/learn/diagnosis/eeg/how-read-eeg . You may want to consider seeking more specialized care at a comprehensive epilepsy center. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures & epilepsy. Usually led by an epileptologist,(epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for you. https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center . Documenting these episodes, you’ve experience in detail,(like you done in your post) and providing a thorough family history (if possible), will be very helpful to review with your healthcare team. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary , is a great tool for tracking these episodes you’ve experienced, organizing your medical history, and more which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance,and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline