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Sleep Walking or Seizure? Some doctors are heros some a let down
Tue, 09/03/2019 - 02:15Topic: Medication Issues
I’m honestly extremely frustrated with how I as well as many friends with unexplained seizures have been treated by doctors. I know there are good doctors out there but what happened to the majority of doctors? Doctors that know medicine is constantly evolving and what we think we know could always change or grow. It’s like they are cave people stuck in glue. The brain is so complex and there is so much that’s still unknown, yet doctors act like they know all there is to know. That’s like an astronomer claiming to understand the universe! Sorry for the ranting I’m just angry at some doctors. So I started having, “seizure like events,” or unexplained seizures when I was 18. I have also experienced for most of my life to be sleep walking and night terrors. However, when I started experiencing these uncontrolled seizure Iike events I felt there could be something else going on. I didn’t have these new events often which made it extremely difficult to find any diagnosis and I still have no answers. I had horrible experiences with doctors telling me it’s all in my head or it’s just anxiety or PNES without even testing or listening to my experiences. I had doctors disregard my sleep events as well. I finally encountered a good open minded doctor, who never pushed meds on me or jumped to conclusions. Thought of all possible reasons for what was going on... whether it be focal seizures, PNES, ow blood sugar, Immune disorders, and so on. However her colleagues and aids treated me like a leper. They judged me saying I was just wasting their time, that people are experiencing real seizures while I was just experiencing PNES or something not worth their time. Which btw no proof of a diagnosis for PNES was ever brought to the table. And those with PNES experience a seizure like event just as those with Epilepsy do. It may not be the same biologically but that doesn’t change how it affects people and their lives. I truly feel let down by modern medicine. I’ve finally turned to a sleep specialist to help me figure out what’s going on and she’s not ruling out possible seizures that I could be having in my sleep. That’s nice when a doctor doesn’t treat you badly and jump to close minded conclusions. I’d love to hear other people’s experiences with doctors, bad and good. And I was wondering about other people’s experiencing with nocturnal seizures, sleep walking, focal seizures or just in general. Thanks!
Hi Eryn_25,Thanks so much for
Submitted by Anonymous on Tue, 2019-09-03 - 09:40
Hi Eryn_25,Thanks so much for posting and we are sorry to hear you’ve had such negative experiences with your doctors. 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. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf It is important to remember that you are not alone and that your overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools For information regarding second opinions or assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.orgYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional supportOr contact your local Epilepsy Foundation: epilepsy.com/localsupport Seizures can take on many different forms and affect different people in different ways. Learn more about seizures & PNES, here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/types-seizures https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events Learn more about nocturnal seizures and safety while sleeping, here:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping You may want to consider with your doctor having a device that can help track seizures, by visiting: https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryas another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf