The cause of E

[137Alice]

Hi, everybody. Recently don`t even know why i again started to wonder - what is the cause of my E. When it is genetic or is caused by brain injury, i mean there is some rational explanation for it it is sad but understandable. I have this strange idea (and somehow doubt that our docs would be eager to discuss it) that perhaps some of us just can`t "digest" all the info we receive. I remember that from childhood i got tired SOOO easily. It was always much better in summer when we stayed in the country -no noise, practically no traffic, no crowds (we lived in a big city), u could stay outdoors in fresh air, bathe, go biking. I was never very sportive but in the country i didn’t get tired. I never had problems at school, i just was always tired. As a teenager i became insomniac and sort of nervous, but my E only started when i was 49.So i wonder, perhaps people with a weak nervous system can develop E just because there is too much going on around them?
Sorry it is so long

 

[acshuman]

Too many causes

Alice,
There are so many different reasons for a person to develop E that in many cases it is impossible to know the reason with 100% accuracy! Many tests(EEG, MRI, CSCAN, etc) can show a doctor where the cause MAY be, but this is never 100%.
There have been people who have had E and had brain surgery who have gone seizure-free for years but then they suddenly have a breakthrough seizure and the doctors have to start all over again when they try to say why because what they previously had thought was the cause had been removed during the brain surgery.
It also has been found that a person who has E may in fact may develop more brain damage from having the seizures and this may lead to more seizures.
A person who has E is in many ways in a Catch22 position. They may have to accept that they have E, but at the same time experience the aggravating limits that having E puts on them!
The more questions a person asks about E may just make it more difficult to understand their E. Learning more can help. but also open new avenues to finding information that can make it harder to deal with their E than they thought.
I have found that accepting what my neurologist or Epileptologist determines is the easiest way to deal with my E because the more a person questions their doctor's diagnosis the more difficulty they may have dealing with their E! :twocents:

acshuman

 

[Frink]

Maybe you had E all along but it was mild and only presented itself as fatigue and nervousness when around the extra stressors of city life.

 

[valeriedl]

I had my first seizure completely out of the blue when I was 27. The drs did many tests an found out that there was damage to my brain but never found out what caused it.

 

[Cint]

My seizures started when I was 22 years old, out of the blue. I had my 23rd birthday in the hospital after suffering severe burns from the first grand-mal seizure. They did multiple tests at the time and never did find out why I started having seizures.

 

[CQ:)]

I had my 1st seizure when I was 9 months old which was not long after I had a tetanus injection for whooping cough. I had tonic clonics until I was 3 & taken of meds when I was 7.

I went 21 years seizure free until I started having seizures again in 2002 when I was 24, those seizures were mainly simple/complex partials.

My 1st seizure was not long after I was vaccinated with whooping cough needle, it was never confirmed as it was the late 1970s but they think the epilepsy was triggered by the reaction of the whooping cough needle.
When the seizures returned & I had MRIs the MRIs all showed scarring on my left temporal lobe. The neurologists/ epiologists all believe that the scarring on my temporal lobe is from all the tonic clonics I had as a baby / toddler but I went 21 years seizures free is still a mystery.

 

[Nakamova]

"Epilepsy" is really just a catch-all term that describes a set of symptoms; as a diagnosis it doesn't shed a whole lot of light on a particular cause. But you could say the same of cancer -- some cancers have a genetic component, some have an environmental component, some have have both. Still... it can be a tantalizing mystery. Where and when did our brains start to misbehave? Was there a point when some intervention would have a made a difference?

In my case, if I had to guess at a cause, I would point to a head injury I had when I was five. But that doesn't explain why I didn't have any seizures until 30 years later. My brother fell 50 feet and landed on his head when when he was in high school. He didn't develop epilepsy. I would say that my sister has the kind of "weak nervous system" that Alice describes. But she didn't develop epilepsy. So the causal mystery persists, and I don't think there will be an answer. For me the bigger question is: Once the horses escape the barn, why is it so darn hard to round them up and get them back inside? One day you are fine and the next day you are having seizures, and from then on your brain may be at risk. As CQ's story shows, the path of any individual's epilepsy journey can be very unpredictable.

 

[137Alice]

Well, guys what i really mean is that when the docs can not find the cause, they just classify a case as unexplainable. I am only wondering if there are other approaches, other studies of these cases than just giving people pills (and i am grateful to my doc whose treatment helped a lot). Yes i do realize that our brain is perhaps something that we` ll never be able to research completely since u can`t study something using it as the instrument for its` own study.Perhaps now it is technically impossible, or perhaps i just don`t know about any of those new developments.
I am the first person to be thankful for all the AEDs we have but i think u noticed that in every instruction is written "The exact mechanism by which this drug acts to treat epilepsy is unknown".
Yes, too often we want impossible or do we?

 

[CrunchyFrog]

I didn't have a seizure until I was in my 20s even though to cyst that is causing them has been there my whole life. Neurologist couldn't explain why it took so long. I thought maybe it was because the atrophy the cyst caused was gradually getting worse, but there has been no change at all according to MRIs I've had since I started having seizures 7ish years ago. I also know people who've had major head injuries and do not have epilepsy. One girl I know was kicked in the head by a horse and was in an induced coma for 2 weeks after 3 brain surgeries and has never had a seizure. It's really quite bizarre, I think doctors don't fully understand how the brain works yet. It's even weirder that some people have idiopathic Epilepsy, there is nothing abnormal in any scans and no one can explain why they have seizures. It is definitely a mystery.

 

[acshuman]

The Brain Is Still An Largely Unknown Part of the Body

Humans have learned many things about the brain, but the expanse of the unknown is so great as far as what is known about the way the brain works.
There are major and minor circuits in the brain. This is why brain surgery is possible. The brain can be reprogrammed through therapy to use the minor circuits if a major circuit has been damaged or removed, such as in what happens during brain surgery. I'm sure many of you, who have had brain surgery, have had an experience right after surgery where you couldn't do things that had been almost automatic to do before surgery. This is because if a circuit in the brain is disturbed enough to not be able to transmit those directions from the brain to the muscles, the brain has to find a new circuit to use to send those signals. This is why therapy is needed! Sometimes the brain is unable to find another circuit to use and a person will lose that function. This is what may cause a person who has a stoke or heart attack to have problems after the problem because some parts of the brain were deprived of oxygen and stopped functioning as a result.
As a result of how much is unknown about the brain a person may have some problems that they are very uncomfortable with, but the problem may be based in an area of the brain that is still being learned about and is NOT totally understood! This is why many times it does a person no good to blame their neurologist or epileptologist for something when what is happening may be caused by a problem deep in an area of the brain that is not fully understood, so as a result, they don't have full knowledge of what may be happening!
We need to keep an attitude of understanding that the doctor isn't going to know everything about everything! This is why doctors consult other doctors for answers!

acshuman

 

[137Alice]

acshuman, it`s a pity u saw my post as blaming anybody. I can see all the progress in medicine and neurology in particular.i know that E is perhaps among those illnesses that are hardest to understand because there is still so much we don`t know about the brain. But i don`t see why i can`t ask my questions. I have been reading all the info i could get and i can assure u when i asked questions not one single doc was offended by my interest. If he was a good specialist he was always happy to answer my question. Actually, i can remember only one young doc who didn`t know much -if there might be any connection between hormones and seizures or could i take my other meds. She was a young assistant at the Epi clinic and i soon understood that she is not very competent. That is why at the beginning of my E i started to look for all the info i could get. Afterwards i met different docs and they helped me enormously and were always glad to give me the info i searched for.

 

[sp0ckward]

Hi, everybody. Recently don`t even know why i again started to wonder - what is the cause of my E. When it is genetic or is caused by brain injury, i mean there is some rational explanation for it it is sad but understandable. I have this strange idea (and somehow doubt that our docs would be eager to discuss it) that perhaps some of us just can`t "digest" all the info we receive. I remember that from childhood i got tired SOOO easily. It was always much better in summer when we stayed in the country -no noise, practically no traffic, no crowds (we lived in a big city), u could stay outdoors in fresh air, bathe, go biking. I was never very sportive but in the country i didn’t get tired. I never had problems at school, i just was always tired. As a teenager i became insomniac and sort of nervous, but my E only started when i was 49.So i wonder, perhaps people with a weak nervous system can develop E just because there is too much going on around them?
Sorry it is so long

Epilepsy is neurologic, which is why it would be smart to discuss this with a neurologist as they are doctors studying your nervous system or "brain waves". But, epilepsy and seizures are different for everyone. Even when two people do have the same diagnosis for a type of epilepsy/seizure, they still have different symptoms or reactions, or what has caused their epilepsy.

There are cases where epilepsy or seizures happen randomly, at any age, and there is no cause for it. Such is in your case, when one receives seizures at an older age versus a younger age. This can be caused by trauma, an experience, or have no cause, which is why epilepsy is such a complicated diagnosis.

You should follow up or contact a neurologist and see what they say, or their opinion. If you haven't already. There are cases of Non-Epileptic Seizures which look like actual epilepsy / seizures, but the MRI/EEG(s) doesn't show any "spikes" which would be evidence of a 'neuro-imbalance'.

For me, mine started at age 6 or 7 and are correlated with a seizure that children are commonly diagnosed of and increases as they age. I first thought mine had to do with trauma because there was no cause for them, but a visit to the neurologist changed that self-diagnosis.

 

[137Alice]

Thanks, sp0ckward. I had all the tests but no answers, that is why i still am trying to understand if there are perhaps other means than AEDs to deal with it. I am in Europe and thought it would be interesting to "talk" to you guys in US.

 

[Cint]

There are cases where epilepsy or seizures happen randomly, at any age, and there is no cause for it. Such is in your case, when one receives seizures at an older age versus a younger age. This can be caused by trauma, an experience, or have no cause, which is why epilepsy is such a complicated diagnosis.

.

This can perhaps be the reason for E/seizures for some folks. Like I said before, my seizures started when I was 22 years old, out of the blue. While in the hospital way back in 1980, they did all the tests available at the time and only found abnormal brain waves. Jump forward 10 years and I knew my seizures were hormonal. Plus my epileptologist asked if there was any trauma while I was growing up. The neuroscientists now realize that trauma; emotional, physical, etc., can damage the brain and cause seizures for some.