I don't understand how I got epilepsy

[bunkers1]

I'm confused...when I was young I was perfectly healthy and then I turned 16 and WHAM! I got hit. Epilepsy, bi-polar and fibromyalgia, all at the same time. Now epilepsy doesn't run in the family and I wasn't injured in anyway, I didn't get really sick. So I sit and wonder " how did I get this?". My doctors won't explain that part to me, all they want to concentrate on is keeping me seizure-free...but I still want to know. Is this a birth defect or something like that that can hide undetected for years? I don't know much about this even though I've had it for 11 yrs now, most of this time I've been worrying about when the next one would be. Now I'm doing better so if possible I'd like some answers. :?

 

[archer]

anyone can get eplespy there doesnt hav 2 b a reason i've had mine for years and i hav no birth defetc its just the lucvk of the draw your doctor is riggt to focus on satying seziure free

 

[Tilei]

I've read anyone can get E. You seem to have a number of nervous system disorders in conjunction with E. Epilepsy, bi-polar and fibromyalgia, all at the same time. I am not sure how the fibromyalgia fits into E, but most people with E also suffer with some form of depression too. They seem to be related in some manner.

Your doctor is right in trying to stabilize or control the seizures. And there are some holistic things you can be doing in conjunction with what your doctor recommends. I know we all hear about eating right and you being a young person are particularly challenged. Even fast foods are now offered in many high schools. Focus on eating whole foods as best you can and start taking a daily vitamin. Your nervous system needs nutritional support. Learning what vitamins support the system made me realize how much was actually lacking in my diet! I was surprised 4 months ago by changing my diet and doing a few other things the doc. approved, at how great I am feeling and how my seizures have not reoccured.

It is important to learn as much as you can about E. My first doc wasn't real helpful for me. So, I searched the internet for information. Start here, the Epilepsy Foundation forum, and at BrainTalk. There are a lot of good experienced people in those forums to chat with. It was at the EF board I learned my struggles with depression were related to E, along with why I wasn't reacting to events in a 'normal' manner. Much of it is all related. I never knew that about E. E is more than just the seizures.

My docs really don't know how part of my brain got slightly damaged or why such a small scar is causing seizures. I have a suspicion of how it got started, but will never be able to prove it. Suffice it to say it came from an 8 minute exposure to a chemical called Methylene Chloride. IMHO. My body should have been able to clear it with no lasting effects, but it seems to me some long term damage may have been done. Again all of that is unproven.

 

[Herb]

I find this discussion of much interest. Through my own experiences as a support person and health care advocate to my spouse who has suffered from Major Depression and cycles of headaches. I’ve learned that illnesses such as Epilepsy, Depression, migraines, Tourette’s, fibromyalgia, mood disorders etc are interrelated neurological illnesses affected by bio-neuro-chemical malfunctioning in the brain. In many instances there is a family history (genetics) to these illnesses but it is not written in stone.

The problem that I find is the lack of definitive answers to my questions and numerous theories and the unfortunate “trial and error approach to wellness.”

I am very much in agreement with Tilei in attempting the most natural and least invasive treatment approaches to controlling and stabilizing one’s malady and then going from there if necessary to alternative and/or adjunctive therapies. I also am in agreement in stressing education and research and collaborating with a trusted, compassionate, knowledgeable and licensed health care practitioner(s).

Good luck, keep trying and never give up hope.

Warmly,
Herb

 

[flashbakx]

Epilepsy through birth

I was healthy to and when I was 16 all of a sudden i kept going unconscious. I got a brain scan done and they found a tumor in my right temporal lobe inwhich they said was a birth mark.

 

[Bernard]

Were they able to remove the tumor? Did it stop the unconscious spells?

 

[Birdbomb]

they found a tumor in my right temporal lobe inwhich they said was a birth mark.

Was this a nevous? Do you have any satellites on your body or any other nevi? The reason I ask is my some was born with a very large one on his face but was very lucky it did not invade his skull.

 

[bobfolgerjr]

There is no answer for your question. I'm 38 now and have been suffering with epilepsy for 25 years now, my I woke one day and just started having seizures. There was no history in my family, I had no injury......they just started happening. My advice is just take one day at a time. Some may be more difficult than others, but try your best to stay positive. I'm on my third VNS stimulator, my second marriage due to epilepsy. Somedays are tough don't let me kid you, but there will be a day when they figure this disease out and its cause.

 

[Bernard]

Hi Bob, welcome to the forum. :hello:

Unfortunately, that's the dilema with "epilepsy". It encompasses a bunch of different seizure disorders and there isn't always an identifiable cause for them.

 

[Mike In Va]

I've read anyone can get E. You seem to have a number of nervous system disorders in conjunction with E. Epilepsy, bi-polar and fibromyalgia, all at the same time. I am not sure how the fibromyalgia fits into E, but most people with E also suffer with some form of depression too. They seem to be related in some manner.

Your doctor is right in trying to stabilize or control the seizures. And there are some holistic things you can be doing in conjunction with what your doctor recommends. I know we all hear about eating right and you being a young person are particularly challenged. Even fast foods are now offered in many high schools. Focus on eating whole foods as best you can and start taking a daily vitamin. Your nervous system needs nutritional support. Learning what vitamins support the system made me realize how much was actually lacking in my diet! I was surprised 4 months ago by changing my diet and doing a few other things the doc. approved, at how great I am feeling and how my seizures have not reoccured.

It is important to learn as much as you can about E. My first doc wasn't real helpful for me. So, I searched the internet for information. Start here, the Epilepsy Foundation forum, and at BrainTalk. There are a lot of good experienced people in those forums to chat with. It was at the EF board I learned my struggles with depression were related to E, along with why I wasn't reacting to events in a 'normal' manner. Much of it is all related. I never knew that about E. E is more than just the seizures.

My docs really don't know how part of my brain got slightly damaged or why such a small scar is causing seizures. I have a suspicion of how it got started, but will never be able to prove it. Suffice it to say it came from an 8 minute exposure to a chemical called Methylene Chloride. IMHO. My body should have been able to clear it with no lasting effects, but it seems to me some long term damage may have been done. Again all of that is unproven.

Thanks for the info on the possible link between epilepsy & depression because I've been really depressed lately myself & have now only begun to seek treatment for that.

My siezures started up when I was 19 going on 20. I'll never forget what happened on the night of 8/19/1993....one minute I was sitting there playing a video game at home,the next minute I'm on the floor with EMT's & firefighters prepping me for a trip to the hospital,it was truely a horrible expereince.

 

[POSITIVEPERSON]

Mike , did you tell the Drs you were playing a video game when you had your first szs?
That could have been your trigger? Have you been tested with flashing lights and eeg to see if that is a trigger for you?

Your depression can come from meds you know. Just because you have epilepsy doesn't mean your depressed. The meds alone have enough side effects to make anyone crazy.

You should be discussing this with your dr. I had had epilepsy 41 yrs , when I get depressed its because of the meds. Not because epilepsy and depression is related.
There are cases where they are, but I would check the med first . Do you keep a medical journal? Thats important to write how you feel each day and whats going , so you can see if the changes are occurring due to meds or illness. As well as help you
communicate whats going on with to your Dr.

riva

 

[Shelley]

unk?

I was born with it apparently. All I ever heard were bits and pieces of what happened. All I have is conjecture and speculation, leaving me grasping for answers, and being teased unmercifully by religious heretics. I think I would have been better off if my parents were honest and treated me like a human being, instead of an evil thing. I am now quite shy, and really don't know how to handle social situations.