u/OutlandishnessOk8298

I wanted to share my journey with this subreddit as over the years I have had so many doctors, neurologists, anger, near death experiences, and nobody would listen to me. This week I was proved correct and I feel the need to spread awareness and hope.

Before I begin; there is NO genetic history of epilepsy in my family, ZERO. I started having Absence seizures at the age of seven but nobody quite knew what was going on until we met with the first neurologist of many. Then we found out I was having at LEAST 250 absence seizures a day and he was worried about my life and brain damage because of this. My wonderful mother tried a million different seizure meds all of which had AWFUL side affects. You name it I have tried it; the week before my first ever period I had my first ever grand mal seizure. Obviously my parents were freaked out and rushed me to the hospital where they sent me to Mayo Clinic where I was in and out for the next 2 years. They tried a million different things and combos of meds until we landed on Ethosuximide and Lamotrigine at age 14-15 I believe. This stopped the seizures however the side affects of lamotrigine made me very depressed. But my neurologists said it was either this or I would ☠️from a grand mal. So we did that for a few very hard years. At age 19 I had my own place with my fiance and one day I felt something change in my brain and body. I do not know how to describe it but my brain felt awake for the first time I could remember. I felt amazing and my gut told me the seizures were gone. Obviously just to be safe I kept taking my meds and scheduled to see my neurologist next month. He advised against stopping the meds of course but I wanted to try. I weaned off of them very slowly and for the next 4 years I never had a grand mal seizure. I watched fireworks and horror movies, stared at lights and had no seizures. At this point I realized my period stopped the same week the seizures did. Then 2 months ago my period came back and the week before it came back (my ovulation and estrogen spike week) I had 3 back to back grand mal seizures lasting 3 minutes each twice in that same week. I was rushed to ER and went to a million doctors almost yelling at them saying it’s connected to my ovulation and all of them said I was wrong. Nobody had EVER mentioned catamalenia epilepsy to me before until I saw a Reddit post here about it. Since then I have spoken to my new female neurologist and said if you do not help me I am getting a hysterectomy because I will not live to see 24 if you don’t. I am now on birth control and clobozam and I feel confident I will be seizure free from now on. If you are going through this, where the neurologist isn’t listening to you, where nobody is helping you, DO NOT STOP FIGHTING. You know your body they do not. Obviously always consult with your doctor first, but trust yourself first too. It IS possible. Thank you so much to this subreddit for saving my life. I love you guys and I love this community. If you have any questions please ask ❤️❤️

I wanted to share my journey with this subreddit as over the years I have had so many doctors, neurologists, anger, near death experiences, and nobody would listen to me. This week I was proved correct and I feel the need to spread awareness and hope.

Before I begin; there is NO genetic history of epilepsy in my family, ZERO. I started having Absence seizures at the age of seven but nobody quite knew what was going on until we met with the first neurologist of many. Then we found out I was having at LEAST 250 absence seizures a day and he was worried about my life and brain damage because of this. My wonderful mother tried a million different seizure meds all of which had AWFUL side affects. You name it I have tried it; the week before my first ever period I had my first ever grand mal seizure. Obviously my parents were freaked out and rushed me to the hospital where they sent me to Mayo Clinic where I was in and out for the next 2 years. They tried a million different things and combos of meds until we landed on Ethosuximide and Lamotrigine at age 14-15 I believe. This stopped the seizures however the side affects of lamotrigine made me very depressed and not wanting to be here. But my neurologists said it was either this or I would die from a grand mal. So we did that for a few very hard years. At age 19 I had my own place with my fiance and one day I felt something change in my brain and body. I do not know how to describe it but my brain felt awake for the first time I could remember. I felt amazing and my gut told me the seizures were gone. Obviously just to be safe I kept taking my meds and scheduled to see my neurologist next month. He advised against stopping the meds of course but I wanted to try. I weaned off of them very slowly and for the next 4 years I never had a grand mal seizure. I watched fireworks and horror movies, stared at lights and had no seizures. At this point I realized my period stopped the same week the seizures did. Then 2 months ago my period came back and the week before it came back (my ovulation and estrogen spike week) I had 3 back to back grand mal seizures lasting 3 minutes each twice in that same week. I was rushed to ER and went to a million doctors almost yelling at them saying it’s connected to my ovulation and all of them said I was wrong. Nobody had EVER mentioned catamalenia epilepsy to me before until I saw a Reddit post here about it. Since then I have spoken to my new female neurologist and said if you do not help me I am getting a hysterectomy because I will not live to see 24 if you don’t. I am now on birth control and clobozam and I feel confident I will be seizure free from now on. If you are going through this, where the neurologist isn’t listening to you, where nobody is helping you, DO NOT STOP FIGHTING. You know your body they do not. Obviously always consult with your doctor first, but trust yourself first too. It IS possible. Thank you so much to this subreddit for saving my life. I love you guys and I love this community. If you have any questions please ask ❤️❤️

I wanted to share my journey with this subreddit as over the years I have had so many doctors, neurologists, anger, near death experiences, and nobody would listen to me. This week I was proved correct and I feel the need to spread awareness and hope.

Before I begin; there is NO genetic history of epilepsy in my family, ZERO. I started having Absence seizures at the age of seven but nobody quite knew what was going on until we met with the first neurologist of many. Then we found out I was having at LEAST 250 absence seizures a day and he was worried about my life and brain damage because of this. My wonderful mother tried a million different seizure meds all of which had AWFUL side affects. You name it I have tried it; the week before my first ever period I had my first ever grand mal seizure. Obviously my parents were freaked out and rushed me to the hospital where they sent me to Mayo Clinic where I was in and out for the next 2 years. They tried a million different things and combos of meds until we landed on Ethosuximide and Lamotrigine at age 14-15 I believe. This stopped the seizures however the side affects of lamotrigine made me very depressed and not wanting to be here. But my neurologists said it was either this or I would die from a grand mal. So we did that for a few very hard years. At age 19 I had my own place with my fiance and one day I felt something change in my brain and body. I do not know how to describe it but my brain felt awake for the first time I could remember. I felt amazing and my gut told me the seizures were gone. Obviously just to be safe I kept taking my meds and scheduled to see my neurologist next month. He advised against stopping the meds of course but I wanted to try. I weaned off of them very slowly and for the next 4 years I never had a grand mal seizure. I watched fireworks and horror movies, stared at lights and had no seizures. At this point I realized my period stopped the same week the seizures did. Then 2 months ago my period came back and the week before it came back (my ovulation and estrogen spike week) I had 3 back to back grand mal seizures lasting 3 minutes each twice in that same week. I was rushed to ER and went to a million doctors almost yelling at them saying it’s connected to my ovulation and all of them said I was wrong. Nobody had EVER mentioned catamalenia epilepsy to me before until I saw a Reddit post here about it. Since then I have spoken to my new female neurologist and said if you do not help me I am getting a hysterectomy because I will not live to see 24 if you don’t. I am now on birth control and clobozam and I feel confident I will be seizure free from now on. If you are going through this, where the neurologist isn’t listening to you, where nobody is helping you, DO NOT STOP FIGHTING. You know your body they do not. Obviously always consult with your doctor first, but trust yourself first too. It IS possible. Thank you so much to this subreddit for saving my life. I love you guys and I love this community. If you have any questions please ask ❤️❤️

Hi! I have had absence seizures since I was 7 years old, grand mal seizures since I was 15 years old and have been in and out of hospitals including Mayo Clinic my whole life. There is no genetic history of epilepsy that we know of however as of four years ago suddenly my period completely stopped. In that same week my seizures almost completely went away. I went from having 250 absence seizures a day with possible grand mal every 3-4 months to only having MAYBE 5 absence seizures every other day and NO grand mals. Once this happened I made an appointment with my neurologist and we agreed to try going off the meds. I was medication free for four years. Then 2 weeks ago I had 4 grand mal seizures in 3 days, 3 of them in one day one after another, and the absence came back full force. One week later I got my period back again. Yesterday I had my neuro appointment and am trying out keppra to see how that works for me until we figure out the hormone stuff. My question is has anyone else dealt with this?? My doctor and I are convinced the two are directly linked (I also have PMOS), she even suggested looking into getting my ovaries removed after some testing as these are life threatening. Has there been any research done on this??

I just found out I was "diagnosed" as BPD when I was a teenager by my doctor and therapist. They couldn't officially diagnose me because of epilepsy. I have damaged relationships with family members who I love dearly, I grew up with divorced chaotic parents which caused me to split multiple times growing up, attempted sui*ide at very young ages. I also have a history of sexual abuse, and my father is an addict. I am relieved on one hand because it's finally like I can see my brain, if that makes sense. But on the other hand I feel very ashamed. There is a lot of stigmas around this disorder and having an official diagnoses on my record doesn't make me very comfortable. I have no idea how to tell my husband about this and the false memories/ Idolization and devaluing that I was going through. My mom has been amazing through this and I am looking for a DBT therapist, but my insurance doesn't cover much and I am unemployed. There is just a lot going on around me and I know I am overwhelmed. I guess this is kind of like my entrance into the community? Any advice I would really appreciate.