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My story. Can anyone help me please?
Fri, 10/18/2019 - 16:58Topic: Share Your Story
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
Submitted by Patriotrehab on Fri, 2019-10-18 - 19:19
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
Submitted by Patriotrehab on Fri, 2019-10-18 - 19:19
https://nonepilepticseizures.com/ Sorry I forgot to include the link.
Hi Ella,I’m a licensed
Submitted by Patriotrehab on Fri, 2019-10-18 - 19:17
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.