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Could I actually have PNES?

Mon, 04/20/2020 - 22:49
Hi there I’ve been experiencing seizures since I was 9. I’m now 20 however I have only just been diagnosed as having epilepsy. My first seizure happened about a week after my parents got divorced, I had a normal EEG etc so they put it down to stress at the time. Two years later when I was 11 I had another seizure, this time at the height of me being bullied in primary school, again they did numerous tests which all came back fine so they said stress was a likely course. I had another seizure two years later during my first week of high school, I was a little stressed about the change and what lied ahead of me, I remember being slightly dehydrated that day as well. Approximately a year later I had another seizure which I recall was around the time of year 9 exams so I was stressing about my grades etc. I had another eeg done which came back as fine. I went for almost 6 years without having another seizure or aura and I have put this down to the fact I seemed to have got on top of my stress, I didn’t seem to worry about things like I used to. I got through high school with great grades and started an apprenticeship as a mechanic 2 years ago which I am really enjoying. August last year I started to look at getting my first car loan which, as you would imagine got me rather stressed for weeks as I wasn’t sure whether or not I could get one. I had an appointment with the bank on Saturday the 24th which thankfully I was given the approval for the loan, however on the following Tuesday whilst I was at work I suffered one of my dreaded seizures which I hadn’t had for nearly 6 years . I went to see a new neurologist who over the next couple of months sent me off for 2 awake EEGs which came back as normal. He also sent me for a sleep deprived EEG which came back as showing a non epileptiform abnormality which he said was due to me being sleep deprived and was nothing to worry about . This was back in November and he said as long as I didn’t have any more episodes he would see me in 6 months to see how I was going- he still hadn’t diagnosed me as being epileptic and had said it was likely due to the stress especially considering my history. Unfortunately I had another seizure in February and another 2 last week (both on the same day) Again these Seizures were linked to stresses with work and covid 19 as a number of people in my workplace have lost their jobs. The two seizures that I had last week, one occurred at home and the other one occurred whilst I was at the hospital which was witnessed by the nurses and doctors who described it on my release papers as a “seizure -like episode”. The next day I had an appointment with my neurologist. He basically said that because I had a seizure in February and the 2 last week, it’s probably a case of epilepsy so he prescribed me medication. He didn’t even ask my mum who has witnessed many of these events what happens during the event etc. We was in his office all but 5 minutes. I did feel as if it was a case of guessing and not investigating. I’ve never experienced seizures during the night, I am never confused after a seizure, my eyes are always closed during the episode; I’ve never experienced incontinence, and most importantly, my seizures seem to always be directly linked to stress. I also experience very short “auras” either on their own or before a seizure; usually only lasting a few seconds. Migraines are a big thing for me as well, I usually have a migraine hours before a seizure. Would it be worth getting a second opinion from a different neurologist? Many thanks in advance


Hi, Thank you for posting. It

Submitted by Anonymous on Tue, 2020-04-21 - 08:15
Hi, Thank you for posting. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goals or feel you can trust, it’s time to get a second opinion. .You may want to consider seeking more specialized care for your epilepsy at an 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 and 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. . It’s important that you’re following -up with your healthcare team (that you’re comfortable with) to discuss your concerns and if you experience any changes in seizure types/ frequency, side effects, symptoms, mood or behaviors. For some people living with epilepsy, stress is one of the most commonly reported triggers. If you’re having difficulties manage stress, it's important that you’re discussing these challenges with your healthcare team as well. For additional stress management techniques, visit: It may be helpful to keep a journal or a diary to help keep track of your seizures & triggers. This can help you and your healthcare team detect potential patterns, allowing you to modify your behavior and lifestyle, as appropriate. In addition to identifying your triggers, documenting how your feeling in detail,will be very helpful to review with your doctors. My Seizure Diary can be used to organize your health issues, track seizures, manage medications, other therapies, or personal experiences and more, which can be shared with members of 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, 

Sounds very confusing and

Submitted by birdman on Tue, 2020-04-21 - 08:48
Sounds very confusing and like a big "guessing" game.  I'm sure someone from the Foundation's ConnectHelp will respond with valuable information.  I've had epilepsy all my life and, like you and many other people, stress has always been a major factor in seizures.  The one thing I wanted to point out is that you expressed stress as the most important link.  That is an important factor to mention to the doctor, but I think it would be very impressive remind any doctor that you "experience very short auras on their own or before a seizure".  I always felt foolish mentioning to my doctor the auras the last only a couple seconds.  But these short sensations are common for persons who experience the bigger "grand mal" or generalized seizures.  Be ready to describe these aural in detail for the doctor as that too is valuable information.  I know they can be hard to describe especially when they are so short.  And migraines are also a significant factor and are often linked to seizure activity.  It may feel like the doctor is playing a guessing game but I think tests (EEG's MRI's) for seizures often do not reveal everything.  I think one of the "tests" that doctors use to identify seizures is medication.  Take the medication your doctor prescribed and take notes on any changes you notice.  This is valuable information.  Mike

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Wed, 2020-04-22 - 16:51
Hi. I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. I have experience treating people with epilepsy and PNES. There’s no way to know with certainty if you have epilepsy unless a seizure is captured on VEEG while it is happening and the brain waves show up on the EEG and the video or a witness is by your side to verify what it is that you are experiencing because you communicate it to them at that moment or later. That’s why they do the other tests like Michael was talking about which includes other EEGs and medication as a trial. Now, there’s a lot about your story that suggests that PNES is more likely to be the diagnosis, but because you had an abnormal EEG, that’s a complicating factor that leads me to suggest another scenario...there’s even a possibility that you could have both. There’s a small number of people who have epilepsy who also have PNES. Some people who have epilepsy also identify stress as a trigger for their seizures, but don’t have PNES. Then, there’s the category of people who only have PNES. The prognosis for people who only have PNES is actually pretty good and while I disagree with the treatment approach that those who claim to be specialists in the field of PNES because they often only use cognitive behavior therapy, I can point you to their website, which includes some possible treatment providers if you want to try therapy to see if your symptoms improve. I just know that I happened to come upon working with clients who had PNES by chance and my clients have all became symptom free., here’s some more info from the Epilepsy Foundation

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