Partial seizure

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Last week I was in theatre (I’m a student midwife) when I started to feel faint. I started jerking and felt as if I was going to have a seizure so sat on the floor. I then had a focal seizure that was witnessed by nurses and Drs in the theatre. I was then taken to A&E where I had another focal seizure again witnessed by nurses and Drs. They were my first seizures since my diagnosis 2 years ago. Since the seizures last week I have felt like Ive been hit by a bus. My body aches, I’ve had headaches and old memories have come back to me. I had started to feel better Tuesday but yesterday I felt “strange”. I began to have auras so went into hospital (as advised when discharged last week), I had a focal seizure on arrival. It wasn’t as severe as the ones last week but nevertheless it was a seizure. Following the seizure a Dr came to see me and said that he thought the seizures I had last week and last night were non-epileptic as I didn’t lose consciousness. He said it’s not possible to have a convulsions whilst being awake. He said following a seizure I should not be “hyperstimulated” (I was sat up on the bed) therefore it wasn’t an epileptic seizure. It’s left me feeling confused, I know my body, I know how I felt and others were there to witness it. I feel like the Dr has undermined me in some way if that makes sense, he wasn’t present last week or last night. He was quite dismissive about the whole thing. He basically said I shouldn’t have gone to hospital despite being told to return straight away if I felt unwell. I don’t know maybe I’m overreacting or being over sensitive, I just found him to be rude. Does anyone else have any experience of this type of seizure? Have you come across this type of attitude from a health care professional?

Comments

Hi Claresouthall, Thanks so

Submitted by Anonymous on Thu, 2019-06-27 - 10:29

Hi Claresouthall, Thanks so much for sharing your story. We are sorry to hear that you had such a negative experience. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors,side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf. 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 https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helplineSeizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizureshttps://www.epilepsy.com/learn/types-seizures/focal-onset-aware-seizures-aka-simple-partial-seizuresIt may be helpful having a device: https://www.dannydid.org/ , that can help track seizures: https://www.epilepsy.com/learn/managing-your-epilepsy/tracking-my-seizures/importance-tracking-seizuresAnd by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Additionally, 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

Hi Claresouthall,  Thanks so much for sharing your story. We are sorry to hear that you had such a negative experience. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors,side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf.                  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 https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources,  provide referrals and additional support. epilepsy.com/helplineSeizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizureshttps://www.epilepsy.com/learn/types-seizures/focal-onset-aware-seizures-aka-simple-partial-seizuresIt  may be helpful having a device: https://www.dannydid.org/ ,  that can help track  seizures:  https://www.epilepsy.com/learn/managing-your-epilepsy/tracking-my-seizures/importance-tracking-seizuresAnd by keeping a seizure diary:  https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Additionally, 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 

Hi Claresouthall, Thanks so much for sharing your story. We are sorry to hear that you had such a negative experience. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors,side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf. 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 https://www.epilepsy.com/affiliatesYou may also contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helplineSeizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here:https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizureshttps://www.epilepsy.com/learn/types-seizures/focal-onset-aware-seizures-aka-simple-partial-seizuresIt may be helpful having a device: https://www.dannydid.org/ , that can help track seizures: https://www.epilepsy.com/learn/managing-your-epilepsy/tracking-my-seizures/importance-tracking-seizuresAnd by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 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 healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Additionally, 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

Yes, I have encountered that

Submitted by TadzioWD6 on Fri, 2019-06-28 - 20:27

Yes, I have encountered that type of attitude from health care professionals. Either many doctors aren't very knowledgeable about epilepsy, or what my rehabilitation counselor told me many years ago is true about the bias and economics of epilepsy; he told me I should choose a different impairment than epilepsy because epilepsy was too expensive and was often held to be a total disqualification for many major life activities, like gainful employment, and would be pushed from one department to the next department endlessly or until I was pushed out ( I wasn't able to hide or discard my epilepsy, so, no employment or related services for me). My partial seizures were often cascading into gran mal seizures, and after a neurosurgeon told me after surgery to go to an ER immediately if I received any warning of any possible impending gran mal, I took his advice; a couple days later, I had seizures and my tongue was bleeding again, I went to ER, but ER dismissed it as a migraine and told me that I was abusing ER resources. While I frequently have migraines, which are distinct from my seizures, some of my migraines are triggered and/or aggravated by strong perfumes, and, many months later after the neurosurgeon/ER Catch 22, the strong perfume on a nurse with my regular doctor triggered a migraine in the doctor's office; the doctor immediately demanded that I take an ambulance (which she had just phoned for) to a distant ER. I refused to go to ER just to be told I had a migraine (which was just a migraine this time), and the doctor called authorities on me. So I face punitive sanctions if I go to ER, and I face punitive sanctions if I don't go to ER.