Seizures caused by hormones

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Hi, Looking for advice. In may 2018, I took an estrogen based contraceptive pill and had multiple seizures for the first time ever. Every menstrual cycle after that I had at least one seizure in the first three days of my period. They tried me on a different low hormone pill and again had multiple seizures. They have diagnosed me as having non epileptic seizures linked to my hormones. I lost my driver's license for approximately 6 months. The doctor started me on cerezette, a progesterone only pill. I have had no seizures since starting it. Apart from one occasion, I forgot to take it in the morning and seizured that night. I am getting married in 18 months the pill has caused acne, significant weight gain (despite strict diet and metafit) and excessive hair growth. After speaking to gp, he said if I come of pill and have multiple seizures I will lose my license again. If I fell pregnant I should be fine though as hormones will sit higher. Apparently my progesterone drops too low. I am thinking of stopping it in two days as I am fed up of side effects but I'm wondering what risks etc are. I don't want to have epilepsy, but I do believe its catamenial seizures. One part of me thinks, if it's non epileptic then I should be able to divert myself. The other part of me thinks if it's epilepsy, they might get to the bottom of it. Please advice. I am the fattest I have ever been, my mood is low and I'm covered in spots. I actually hate what this pill is doing to me. X

Comments

Hi xemms04x, Thanks for

Submitted by Anonymous on Tue, 2019-08-13 - 09:53

Hi xemms04x, Thanks for sharing your story, we understand your concerns and frustrations, but it’s very important that you continue to follow-up with your healthcare team prior to make any changes in medication to express your concerns and any changes in seizure frequency, side effects, seizure types, changes in behaviors and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You may want to consider with your healthcare provider having a device that can help track your seizures, by visiting: https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool that may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers. For assistance finding an epilepsy specialist near you, or for a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.ilae.org/ https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions Learn more about women and epilepsy, PNES & catamenial seizures here: https://www.epilepsy.com/living-epilepsy/women/women-faq https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events https://www.epilepsy.com/article/2016/10/basics-about-catamenial-epilepsy For additional information about hormones and contraceptives, visit: https://www.epilepsy.com/living-epilepsy/women/all-women/contraception https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy It is also important to recognize that epilepsy is more than just seizures, 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 Additionally, our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline

Hi xemms04x,  Thanks for sharing your story, we understand your concerns and frustrations, but it’s very important that you continue to follow-up with your healthcare team prior to make any changes in medication to express your concerns and any changes in seizure frequency, side effects, seizure types, changes in behaviors and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You may want to consider with your healthcare provider having a device that can help track your seizures, by visiting:  https://www.dannydid.org/ and by keeping a seizure diary:  https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool that may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers. For assistance finding an epilepsy specialist near you, or for a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  https://www.ilae.org/  https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions  Learn more about women and epilepsy, PNES & catamenial seizures here: https://www.epilepsy.com/living-epilepsy/women/women-faq  https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events https://www.epilepsy.com/article/2016/10/basics-about-catamenial-epilepsy  For additional information about hormones and contraceptives, visit: https://www.epilepsy.com/living-epilepsy/women/all-women/contraception  https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy  It is also important to recognize that epilepsy is more than just seizures, 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 Additionally, our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline  

Hi xemms04x, Thanks for sharing your story, we understand your concerns and frustrations, but it’s very important that you continue to follow-up with your healthcare team prior to make any changes in medication to express your concerns and any changes in seizure frequency, side effects, seizure types, changes in behaviors and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf You may want to consider with your healthcare provider having a device that can help track your seizures, by visiting: https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool that may be helpful in tracking seizures, other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your care providers. For assistance finding an epilepsy specialist near you, or for a second opinion, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist https://www.ilae.org/ https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions Learn more about women and epilepsy, PNES & catamenial seizures here: https://www.epilepsy.com/living-epilepsy/women/women-faq https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-events https://www.epilepsy.com/article/2016/10/basics-about-catamenial-epilepsy For additional information about hormones and contraceptives, visit: https://www.epilepsy.com/living-epilepsy/women/all-women/contraception https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy It is also important to recognize that epilepsy is more than just seizures, 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 Additionally, our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support. epilepsy.com/helpline

I can NOT take any type of

Submitted by ToBeFree on Sat, 2019-09-07 - 21:59

I can NOT take any type of estrogen based pill as it will cause me to have a seizure. It doesn't matter how low the amount is, it will still cause me to have a seizure. I would suggest that you do not stop any medication without first talking with your doctor. Might I also suggest speaking with a neurologist.