You will all think I am nuts but I swear that birth control YAZ caused mine. I was taking the second month of samples given to me and I had sooooo many side effects. Seizures began at this time. It seems to be that the list of people having this problem from YAZ is growing and growing. THe doctors of course will not say anything about this or respond to any questions I have about it.
Does anyone know the cause of their E?
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Naomi55
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It's so interesting to me reading some of your responses and your apparent acceptance of your diagnosis... Ultimately I accept it too, I guess... Well, under certain conditions, but I can see others of us grasping to understand how maintaining consciousness, something so inextricable from living life, has become so fragile... I remember really becoming fascinated with hearing about my loss of consciousness because I was gone... It was no after-life experience or great peace or strange dream... I was just gone, yet my body was here, obviously... Consciousness just never seemed so fragile. And it's great that I know better than to take it for granted, but I'm dying for answers to how I got this way... and I hope those of you who are struggling for answers get yours. And I further hope that those of you (epileric is the only name sticking with me as I type this) who have a greater acceptance continue to chime in here - everyone has perspective to offer, it's strange but wonderful for me to consider that, at the end of the day, it doesn't really matter how/why I'm here... Well, unless we can prevent someone else from falling victim (yaz?) or correct imbalances (hypoglycemia?).
homemom360
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I Have to say after reading all the post that I have to count myself as "lucky" in some way.
I have had seizures now for 21 yrs.
I did not start having them till I hit puberty.
They started out as simple sencery partials, with some tingling in my hands and face and by the time I was twenty one had advanced to full blows T/Cs.
For the longest time I was left to take the medication I was told to, in the dosages I was told to.
That tolerance to do as I was told though came to a holt when the seizures once again began advancing and scared me into seeing the doctor again.
This is where I count myself as lucky.
At the time of my big scare my family and I where living just outside of Seattle WA and I went to see a neurologist there through there epilepsy center and I found an angel here on earth.
He was the first doctor I had seen since my first T/c that actually listed and it was the first visit I had had with a doctor that lasted longer than the wait to get in.
He listed to the complete history. He listed to my questions. He listened to my concerns and fears.
When I was all done rather than prescibe another pill and send me on my way he asked me if I wanted to know what was causing the seizures. I told him absolutly.
The very next week I spent the weekend in Harbor Veiw Medical Center on there Epilesy ward and had a video EEG done, as well as having yet another MRI done.
By the time the weekend was over I had had three T/C and three lesser seizures, which provided more than enough information for them.
At my next apointment I was able to find out the the root cause of the seizures and even an explination as to why I did not have them till I was a teen ager and why they are changing as I get older.
My brain is paint splashed with grey matter that does not do anything. That grey matter is sitting in pats of the brain that are controlled alot by hormones and that is the reason for the puberty wake up call for the seizures and for the changes as I age.
There is unfortunatly little they can do to stop the seizures other than medication because of fact that the grey matter is so scattered and is on both sides of my brain making surgery an absolute no. They started me an a good medication though and I have been T/C free now for 28 months.
Finding the reason doesn't always help to find a cure, but I will say having something in my hands that told me that there was actually something physically abnormal about me, helped me to stop blaming myself and helped me to stop beleiving that I was doing this all to myself some how.
There are alot of you out there that may never know what is causing your ailment, but know that you are not the problem, and anyone that tells you other wise is just not thinking.
On a side note anyone that lives in the Seattle WA area that is having a problem having there seizures diagnosed please go visit Harbor View Medical Center. They even have a payment plan especially for people with seizues, like people with cancer that pays for the tests that you need.
I have had seizures now for 21 yrs.
I did not start having them till I hit puberty.
They started out as simple sencery partials, with some tingling in my hands and face and by the time I was twenty one had advanced to full blows T/Cs.
For the longest time I was left to take the medication I was told to, in the dosages I was told to.
That tolerance to do as I was told though came to a holt when the seizures once again began advancing and scared me into seeing the doctor again.
This is where I count myself as lucky.
At the time of my big scare my family and I where living just outside of Seattle WA and I went to see a neurologist there through there epilepsy center and I found an angel here on earth.
He was the first doctor I had seen since my first T/c that actually listed and it was the first visit I had had with a doctor that lasted longer than the wait to get in.
He listed to the complete history. He listed to my questions. He listened to my concerns and fears.
When I was all done rather than prescibe another pill and send me on my way he asked me if I wanted to know what was causing the seizures. I told him absolutly.
The very next week I spent the weekend in Harbor Veiw Medical Center on there Epilesy ward and had a video EEG done, as well as having yet another MRI done.
By the time the weekend was over I had had three T/C and three lesser seizures, which provided more than enough information for them.
At my next apointment I was able to find out the the root cause of the seizures and even an explination as to why I did not have them till I was a teen ager and why they are changing as I get older.
My brain is paint splashed with grey matter that does not do anything. That grey matter is sitting in pats of the brain that are controlled alot by hormones and that is the reason for the puberty wake up call for the seizures and for the changes as I age.
There is unfortunatly little they can do to stop the seizures other than medication because of fact that the grey matter is so scattered and is on both sides of my brain making surgery an absolute no. They started me an a good medication though and I have been T/C free now for 28 months.
Finding the reason doesn't always help to find a cure, but I will say having something in my hands that told me that there was actually something physically abnormal about me, helped me to stop blaming myself and helped me to stop beleiving that I was doing this all to myself some how.
There are alot of you out there that may never know what is causing your ailment, but know that you are not the problem, and anyone that tells you other wise is just not thinking.
On a side note anyone that lives in the Seattle WA area that is having a problem having there seizures diagnosed please go visit Harbor View Medical Center. They even have a payment plan especially for people with seizues, like people with cancer that pays for the tests that you need.
Loopy Lou
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I'm still not sure what caused my epilepsy, although there is a strong genetic link on both my mum and dad's side.
I had my first tonic clonic in front of someone just over 2 years ago, but from all i know now (signs, indicators that i brushed off before), i could have been having nocturnals since long before that. Since i've looked into partials too, i've had them since i was fairly young, but it was putting down to me being a little dopey and day dreaming.
I only got diagnosed after the second tonic clonic i had, and then everything else seemed to sort of come to light.
But hey, at least now i know that i'm not stupid/dopey lol.
I had my first tonic clonic in front of someone just over 2 years ago, but from all i know now (signs, indicators that i brushed off before), i could have been having nocturnals since long before that. Since i've looked into partials too, i've had them since i was fairly young, but it was putting down to me being a little dopey and day dreaming.
I only got diagnosed after the second tonic clonic i had, and then everything else seemed to sort of come to light.
But hey, at least now i know that i'm not stupid/dopey lol.
foreverdark
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I don't know what caused mine. I was 28 or so when I had my first TC. As a kid I in typical young boy fashion had many head bumps but never any serious ones that my parents could remember other than a few concusions. MRI's don't show anything other than some swelling/water build up in the area where the E is supposed to be at.
Like many have said already I don't really care about the cause anymore. Keeping it controlled is my main concern now.
Like many have said already I don't really care about the cause anymore. Keeping it controlled is my main concern now.
Elaine H
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Hi There
Sounds like you are in desperate need of some sound advice. I hate it when all the neighbours friends family and relatives chip in, and none of them have the foggiest idea what they are talking about!! I'm not an expert, but I've had epilepsy for twenty five years, had brain surgery twice, studied epilepsy for four years, and have almost finished my book on living with epilepsy, so I'll try and help, I'm almost just about seizure free, and my goal in life is to help raise awareness of this misunderstood condition, and make people round the world realise, that we are as capable and intelligent as anyone alse, we do not want to be picked out from society, and we are merely people with epilepsy, so what?!
I'm assuming that your hubby has had an EEG, that would pick up epileptic activity within the brain, and then at the end of the test, he will have a strobe light shone into his eyes, and that would determine if he was photsensitive or not (prone to seizures with flickering lights or strong vivid patterns, flashing lights etc) only 3-5% of PWE people with epilepsy are photosensitive. It can be hereditary, and 75% of people who are photosensitive will have epilepsy for life.
People don't realise that there are a variety of causes for epilepsy, and people can have seizures without them being epileptic seizures. Cryptogenic seizures are when a cause is never discovered, Idiopathic seizures are when there is a genetic/hereditary connection, and Symptomatic seizures (as with me) is when a cause is found for their epilepsy. An MRI scan is usually performed to see if there are any structural surface problems that could cause the seizures, CT and CAT scans again take a cross section look at the brain again for underlying problems and causes of seizure activity.
Some people can actually have a couple of seizures and never have another one, and of course seizures can accompany a variety of other more complex medical conditions such as Autism, Downs Syndrome, Alzheimers, and a Stroke, also head injury etc can trigger a seizure. I was a forceps delivery which caused a lesion on my right temporal lobe, the area just above my right ear, it wasn't triggered until stress from my parents splitting up, stress is big contributor to the onset of epilepsy. Epilepsy is defined as a "physical disease" and cannot be cured, but you can as I said, have one seizure and never another one, we are all so different and the brain so very very complex. By the way, don't refer to him as "an epileptic" will you, it is a disgusting label and one that we here in the UK are striving to wipe out, it is not used by the medical profession here anymore thank God!!! You sure won't help your man by labelling him at this early stage. If the seizures are recurring, the investigations should continue and he should be, if not already prescribed a good anti-convulsant. I am lucky to be under one of the most eminent professors of neurology in the UK, and he has helped me with my book and my studies, and I have learnt so much from him.
I wish you all the luck in discovering a way of controlling the seizures if indeed they are epileptic seizures, if they are, make sure he keeps his head up high, it is nothing to be ashamed of, and just make sure you are all there for him, I'd just advise him to find out as much as he can about his condition, and you'll get great support from the folks on here. I've a wealth of information here, and would be only too pleased to help out if you need any more info ok?
Best Regards
Lainey
Sounds like you are in desperate need of some sound advice. I hate it when all the neighbours friends family and relatives chip in, and none of them have the foggiest idea what they are talking about!! I'm not an expert, but I've had epilepsy for twenty five years, had brain surgery twice, studied epilepsy for four years, and have almost finished my book on living with epilepsy, so I'll try and help, I'm almost just about seizure free, and my goal in life is to help raise awareness of this misunderstood condition, and make people round the world realise, that we are as capable and intelligent as anyone alse, we do not want to be picked out from society, and we are merely people with epilepsy, so what?!
I'm assuming that your hubby has had an EEG, that would pick up epileptic activity within the brain, and then at the end of the test, he will have a strobe light shone into his eyes, and that would determine if he was photsensitive or not (prone to seizures with flickering lights or strong vivid patterns, flashing lights etc) only 3-5% of PWE people with epilepsy are photosensitive. It can be hereditary, and 75% of people who are photosensitive will have epilepsy for life.
People don't realise that there are a variety of causes for epilepsy, and people can have seizures without them being epileptic seizures. Cryptogenic seizures are when a cause is never discovered, Idiopathic seizures are when there is a genetic/hereditary connection, and Symptomatic seizures (as with me) is when a cause is found for their epilepsy. An MRI scan is usually performed to see if there are any structural surface problems that could cause the seizures, CT and CAT scans again take a cross section look at the brain again for underlying problems and causes of seizure activity.
Some people can actually have a couple of seizures and never have another one, and of course seizures can accompany a variety of other more complex medical conditions such as Autism, Downs Syndrome, Alzheimers, and a Stroke, also head injury etc can trigger a seizure. I was a forceps delivery which caused a lesion on my right temporal lobe, the area just above my right ear, it wasn't triggered until stress from my parents splitting up, stress is big contributor to the onset of epilepsy. Epilepsy is defined as a "physical disease" and cannot be cured, but you can as I said, have one seizure and never another one, we are all so different and the brain so very very complex. By the way, don't refer to him as "an epileptic" will you, it is a disgusting label and one that we here in the UK are striving to wipe out, it is not used by the medical profession here anymore thank God!!! You sure won't help your man by labelling him at this early stage. If the seizures are recurring, the investigations should continue and he should be, if not already prescribed a good anti-convulsant. I am lucky to be under one of the most eminent professors of neurology in the UK, and he has helped me with my book and my studies, and I have learnt so much from him.
I wish you all the luck in discovering a way of controlling the seizures if indeed they are epileptic seizures, if they are, make sure he keeps his head up high, it is nothing to be ashamed of, and just make sure you are all there for him, I'd just advise him to find out as much as he can about his condition, and you'll get great support from the folks on here. I've a wealth of information here, and would be only too pleased to help out if you need any more info ok?
Best Regards
Lainey
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dumbspouse
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My wife actually has them, I'm just the spouse. 
Gross incompetence from a doctor when my wife was being delivered... Basically he pushed her in and out.
Gross incompetence from a doctor when my wife was being delivered... Basically he pushed her in and out.veteran
I would say ditto about what RobinN said. E. since age 11, I am now almost 53. No cause has been detected, just low seizure threshold. No sleep, messed up electrolytes, stress, and there is my winning combo for a T/C. I just had one, after a 7 year hiatus. When I let my guard down E. makes a come back, so back to being paranoid, and watching for triggers. My Father just died, and I needed to be on full alert, but too preoccupied. I live in the south, so I think I will stay indoors til' October! Our heat index is hangin' around 105 degrees. Ugh. Best of luck, keep your eye on triggers, watch the diet. Remember, this is not just about medication anymore, it is the over all big picture.
I would say ditto about what RobinN said. E. since age 11, I am now almost 53. No cause has been detected, just low seizure threshold. No sleep, messed up electrolytes, stress, and there is my winning combo for a T/C. I just had one, after a 7 year hiatus. When I let my guard down E. makes a come back, so back to being paranoid, and watching for triggers. My Father just died, and I needed to be on full alert, but too preoccupied. I live in the south, so I think I will stay indoors til' October! Our heat index is hangin' around 105 degrees. Ugh. Best of luck, keep your eye on triggers, watch the diet. Remember, this is not just about medication anymore, it is the over all big picture.
lovemyladybug
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no idea for me , just started having them in my teens
RobinN
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I reread my post and realize I never stated what I believe to be the reason my daughter has had seizures. They began when she was going through puberty, she was 14.
Catamenial Seizures, Hypoglycemia, Fungal overgrowth, diet,
It has proven that making nutritional changes have improved her seizure threshold. Rebecca has been med free for about 3 yrs, and remains seizure free for 8 months. The remedy was not a quick fix, but the quality of life has improved since she stopped taking medication, and improved her dietary choices.
EDIT: I have been told by conventional medical doctors that the "cause" of my daughters seizures is a heterotopia in the gray matter of the right frontal lobe. However a mother's observation, and instinct have proven, that even with this "birthmark" present, she was 14 yrs seizure free prior to her first episode. Seizures increased when conventional medicine was tried.
Finding ways to raise her seizure threshold (neurofeedback, nutrition, emotional support, vitamin and mineral supplementation) she now remains seizure free and med free.
Catamenial Seizures, Hypoglycemia, Fungal overgrowth, diet,
It has proven that making nutritional changes have improved her seizure threshold. Rebecca has been med free for about 3 yrs, and remains seizure free for 8 months. The remedy was not a quick fix, but the quality of life has improved since she stopped taking medication, and improved her dietary choices.
EDIT: I have been told by conventional medical doctors that the "cause" of my daughters seizures is a heterotopia in the gray matter of the right frontal lobe. However a mother's observation, and instinct have proven, that even with this "birthmark" present, she was 14 yrs seizure free prior to her first episode. Seizures increased when conventional medicine was tried.
Finding ways to raise her seizure threshold (neurofeedback, nutrition, emotional support, vitamin and mineral supplementation) she now remains seizure free and med free.
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My mother had a curette when she was pregnant with me. She did not have it as a method to terminate pregnancy - it was for other health concerns. She didn't realise she was pregnant at the time and later when she discovered she was and told the nurses at the hospital they didn't believe her. She was told that if she'd had a currette she would not be pregnant. Of course, the doctors have said it's possible it was the cause of my E but nobody knows for certain and my diagnosis is generalised idiopathic E.