Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

My story. Can anyone help me please?

Hey! My name is Ella, and I'm 15 years old. I started having seizures when I was 9 months old. They were only brief abscences, but I was never fully diagnosed, as my EEG was clear. When I was 11, my teacher started noticing that I was continuously not responding, and twitching a lot. My mum took me back to the doctors, where they diagnosed me with a list of conditions, but NOT epilepsy. A lot of distressing events happened in my life, so people assumed that stress was the reason for everything. When I was 13, I started blacking out. I would randomly collapse, be unconscious, and not remember anything. I spent a lot of time in hospital. Nothing was done. A month after my 14th birthday, I had my first tonic-clonic seizure. I didn't remember anything. I had bitten my tongue, wet myself and vomited when I woke up. Over time, I had around 5 a month, but then progressed to having up to 6 in a day. I had another EEG, which came back clear. I was misdiagnosed with syncope, reflex anoxic seizures, and a heart condition. I am currently seeing an epilepsy specialist. However, I'm being told I'm faking my seizures, and they're psychological. I don't think they are, neither does my mum, dad or my friends. I either smell burning, have pins or needles, or don't have a warning, and collapse "like a tree". I never remember anything. I'm dissorientated after. I wet myself, bite my tongue and foam at the mouth. But I'm continuously being told it's all in my head. Does it sound like epilepsy or psychological? A month ago, I went into staus at school. I had 19 seizures in a row, and was on blue lights in an ambulance to hospital. They're refusing to put me on medication. I just don't know what to do anymore. Thank you for reading my story.

Comments

Hi Ella,I’m a licensed

Hi Ella,I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I just responded to a 15 year old a few days ago (I think) in the Teen Zone with a similar experience. It’s unclear what the doctor is saying to you though. Sometimes people misinterpret what the doctor is saying when they suggest that a person has PNES and they think the doctor means that “it’s all in their head” or “they’re crazy” or “they’re faking” and so on whereas that’s not what PNES is at all. If the doctor actually said that you are “faking” that’s a different diagnosis entirely - called malingering or fictitious disorder. Here’s a very informative website that includes a documentary with real people who have PNES and their experiences with it. It’s not in the least bit boring and it can provide hope you with hope if you watch it. Many people who have PNES become symptom free in under a year with psychotherapy. I’ve treated clients with PNES and they have all become completely free of their events with psychotherapy, some believed they only had epilepsy but went off their seizure medication as a result of our work together. Typically the gold standard to diagnose epilepsy v. PNES is an extended VEEG monitoring so that they can capture your typical events. If that has already been done, they may have made up their minds conclusively. If not, they may have other reasons for believing this about your symptoms. Either way, since we cannot tell you whether your events are seizures or not...you essentially have two options within whatever your parents are willing to do. You could seek a second opinion or you could learn about PNES and get psychotherapy to treat it as the current doctor recommends and potentially be symptom free in less than a year. Remember though that success in psychotherapy if you do have PNES is based on your desire to be healed. 

Hi Ella,I’m a licensed

Hi Ella,I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I just responded to a 15 year old a few days ago (I think) in the Teen Zone with a similar experience. It’s unclear what the doctor is saying to you though. Sometimes people misinterpret what the doctor is saying when they suggest that a person has PNES and they think the doctor means that “it’s all in their head” or “they’re crazy” or “they’re faking” and so on whereas that’s not what PNES is at all. If the doctor actually said that you are “faking” that’s a different diagnosis entirely - called malingering or fictitious disorder. Here’s a very informative website that includes a documentary with real people who have PNES and their experiences with it. It’s not in the least bit boring and it can provide hope you with hope if you watch it. Many people who have PNES become symptom free in under a year with psychotherapy. I’ve treated clients with PNES and they have all become completely free of their events with psychotherapy, some believed they only had epilepsy but went off their seizure medication as a result of our work together. Typically the gold standard to diagnose epilepsy v. PNES is an extended VEEG monitoring so that they can capture your typical events. If that has already been done, they may have made up their minds conclusively. If not, they may have other reasons for believing this about your symptoms. Either way, since we cannot tell you whether your events are seizures or not...you essentially have two options within whatever your parents are willing to do. You could seek a second opinion or you could learn about PNES and get psychotherapy to treat it as the current doctor recommends and potentially be symptom free in less than a year. Remember though that success in psychotherapy if you do have PNES is based on your desire to be healed. 

https://nonepilepticseizures

https://nonepilepticseizures.com/ Sorry I forgot to include the link.

Hi, Thanks so much for

Hi, Thanks so much for posting and we understand your frustrations and concerns. Treatment varies for each individual, so it’s important that you consult with your healthcare team (that you’re comfortable with), to determine what is best for you and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. Gianna has offered some great advice and it’s important to remember that you are not alone. It is also important to remember that your overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures & PNES, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during... https://www.epilepsy.com/learn/types-seizures https://www.epilepsy.com/learn/diagnosis/imitators-epilepsy/psychogenic-... key part of managing Epilepsy or PNES is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. You may want to consider keeping a diary, or a journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... s a great tool for managing  medication, identifying& tracking seizures, other symptoms, therapies,recognizing triggers and health events that may affect seizures and wellness,which can be shared with healthcare team. Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what to do if you have an episode. Learn about potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe Additionally you may always contact our national 24/7 helpline by emailing us at contactus@efa.org,or by calling, 1-800-332-1000, for additional questions you may have and assistance in connecting you to national resources: https://www.epilepsy.com/living-epilepsy/247-helplineor local resources: https://www.epilepsy.com/affiliates 

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P