Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Feeling lost after 17 years with no diagnosis

Tue, 11/12/2019 - 21:15
Hi, I'm a 24 year old female and have been getting seizures since I was about 7 years old. I had my first seizure after a teacher told my family I wasn't paying attention in class and referred me to get a hearing test done. I had a normal hearing test but ended up having a seizure in the doctor's office after getting a vaccination. Turns out I had just had that same vaccination a few weeks ago and got a double dose. I remember feeling like time slowed and then dizzy but then blacked out after. Apparently I drooped over onto the exam bed, my entire body stiffened, face contorted and I started shaking. I was then rushed to the hospital. All scans (EEG and MRI) were normal. My platelets were weirdly low but since then i've had normal platelets. Fast forward to now, I've had probably about 15 seizures in my life since. The situations vary widely, from watching TV, to get my blood drawn, eating lunch, running in a friend's yard, talking with friends to going to a vet's office. I can't seem to find any correlation or trigger. I have had three seizures in medical settings though (after getting a vaccine, blood drawn and then ears pierced). I have a pretty high pain tolerance though and have had many vaccines, blood draws and was even hit by a car last year while biking and didn't have a seizure. Doctors have told me my entire life that I'm just anxious in medical settings, even though the majority of my seizures have happened at home, while I wasn't anxious. I work in the medical field now and do not feel on edge in medical facilities! Until this year, doctors always told me I had "psycho-somatic seizures"........ I always get this specific feeling before the seizure (weird, floaty, time feels weird, hearing goes), black out and then when I come to I am incredibly disoriented. I first feel very very relaxed and always think that i'm waking up from the deepest but also trippy sleep if that makes sense? I've had seizures where I keep waking up and blacking out where I feel as if it has been happening for a full day but it's only for a few minutes. My seizures generally last about 20 seconds and then I'm been disoriented afterwards for as long as 3 hours. I am then incredibly exhausted. I am really afraid because I recently had two seizures in the last month (which has never happened to me). My last one was the worst I've ever had. I was in a store and went to pay then blacked out. I guess I stood there with a blank look for a few second then collapsed, my eyes rolled in the back of my head, my body stiffened and shook and my jaw opened and closed. When I came to, I was incredibly out of it and vomited (which I've never done before). I felt completely fine before. Sorry that this is so long and jumbled. I'm just feeling lost and looking for any guidance. I got an MRI, sleep deprived EEG and ambulatory EEG and even a Holter heart monitor test and they're all coming up clear. Blood tests are even fine. Has anyone with epilepsy had a similar diagnosis story?

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Wed, 2019-11-13 - 09:12
Hi, Thank you for posting, it sounds like you’ve been through a lot. It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support, here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsIt’s also important that you’re continuing to follow-up with your healthcare team to express your concerns and if you continue to experience, any changes in seizure types/frequency, side effects symptoms, behaviors and moods to determine what individual treatment plan is best for you. If you have not already, you may want to consider seeing an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist A key part of managing epilepsy 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. Review our women and epilepsy section of our website to learn more about issues that are unique to you as a woman with epilepsy. https://www.epilepsy.com/living-epilepsy/women Create an individual 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 a seizure.  Use a journal or diary to track seizures, record medical history, set reminders, manage medications, side effects, moods, behaviors, recognizing triggers and health events that may affect seizures and wellness, which can be shared with your healthcare teamshttps://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf 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  

I’m a licensed clinical

Submitted by Patriotrehab on Wed, 2019-11-20 - 12:01
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. The only way that is currently available determine if your seizures are epileptic vs. non-epileptic is by capturing an event through long term VEEG. Given that your events are rare, you may not have an event, but it’s really the only way for them to know for sure. If you haven’t been prescribed medication before and been responsive to it, an epilepsy specialist may still try that too. I often tell my clients who are told that their seizures are “psychological” that it doesn’t matter to me if they are or not because research shows though that psychotherapy does help improve medical and psychological health for people. Many of my clients have become symptom free and no longer take any seizure medication. Those that still require medication have epilepsy, but even they often report a reduction in seizures if stress is a trigger or they are better adjusted to it based on our work together. So, you essentially have three options. You can continue searching for a diagnosis and seizure control. Or you could begin psychotherapy and see where that leads you. Or you could do both and then see what works best for you, ultimately terminating one before the other. 

If the source of the seizure

Submitted by OofFrontalLobeness on Sat, 2020-03-07 - 23:41
If the source of the seizure is really deep in the brain then it can end up not showing on the eeg even during the seizure. I suggest finding a neuro who might look into and consider that-but will look at your symptoms to try and pinpoint location in the brain so the right treatment options can be done.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.