Does anyone know the cause of their E?

[ddr1166]

Hi, all - I'm still a little new (husband has E, three seizures this year, he's 45 - first time he's ever had them).

Question: It seems that everyone (mostly relatives) is offering advice to us on the "cause" of his seizures - yet - the Neuro (and us) still aren't sure. I'm coming to learn that many folks really don't know what causes them (if you are otherwise healthy).

Do you all find that to be the case? Do you also have people (trying to be helpful, I know, but sometimes annoying) always sending you articles and information as to how to "cure" it or how to "truly diagnose" the cause of the loved ones' seizures? I have family convinced that if we don't try "X" we are somehow being negligent (and we don't believe "X" is the right way to go).

I'm all for new information all the time, but I think you get my drift -

Thanks - D in Dallas

 

[epileric]

Everyones E. has a different cause. I was born with mine & they never knew the cause until I was 39 years old when they found a lesion on the hypothalamus of my brain. I've had numerous EEGs & MRIs but it wasn't until then that one could read the MRI properly to notice the lesion.

Truth be known, by the time they discovered what caused my seizures, I had decided that knowing the cause is very secondary to treating the actual seizures. It is interesting to know but it hasn't made a difference in how my E is treated.

 

[rangerwvu]

I feel your pain...my seizures also began as an adult. My understanding from several neuros and a bit of research indicates that the majority of people with seizures never get a definitive on the cause...if you are born with it, have some type of head trauma, etc..then that is understood. Otherwise, I agree, it is good to get to the point where I focused on 'control' as much as I could (understanding that there were triggers, what they were, and how to avoid them as much as possible). I think my experience was somewhat similiar to Epilerics as a test this year finally showed that I have two 'dead spots' on/in my left temporal lobe that are the apparent cause of seizures. It was good to know, but anticlimatic in a way, as it still did not resolve anything in terms of there was no difference in treating it. It did cause me to step up my game on identifying triggers though as I finally had to face the fact that E was not going to go away as it had showed up, suddenly and for no apparent reason. All the best to you and your husband!

 

[dfwtexas]

My neurolgist said 80% of seizures are idiopathic in nature...in that they are not 100% sure of the cause. In my case, my doctor seem to think they know the cause or causes, but it can never be proven. In May 2006, I had very traumatic injury to my arm (not my head!), I had double compound fractures and then started developing multiple bacteria infections...at my worst, I had 8 different kinds at one time. I had port line and was on very strong IV meds 24/7 to battle the infections for 2 years. Even after the 2 years, I had to be on oral antibotics for another year. My doctors believe either the infections, IV meds or the combination of the two caused neurological damage to the left partiel lobe. I went thru 10 surgeries to save my arm from amputation, I never thought about after effects from this traumatic period of my life.

 

[RobinN]

From our experience, I didn't feel that it was even a concern of the doctors to try to find out the cause. They did point to a "birthmark" on her right frontal lobe, and tried to tell me that was the cause, but my answer now is.... she was fine for 14 yrs. That is where I want to help her return to.

So it was explained to me by a member here, that EVERYONE has a seizure threshold. Those that have more than one, their threshold is lowered for some reason. Some have had an accident, some a virus, some a birth defect, others a food sensitivity, or hormonal imbalance... Doctors just don't have the time or the $$ to spend, in order to find out the cause. They cover themselves by placing everyone on a medication after they have had two seizures. If you have more seizures, they have the option to change the medication. A few tests are scheduled, and by this time you are 4 or 5 yrs into the rollercoaster ride. A bit hard to stop it at this point.

That's my opinion ... from our experience.

 

[ddr1166]

Thanks, Robin!

 

[valeriedl]

They have no idea what caused mine. I had my first seizure about 7 years ago. Luckily I spent the night at the guys house that I was dating at the time because I woke him up in bed shaking uncontrollably. If I had been alone I know I would have died.

I had so many tests done but they still don't know what caused it.

I had gone to a concert that night and my husband is determined that someone had slipped some sort of drug into something that I was eating or drinking there. I don't do drugs so I know that I wouldn't have brought it on myself. I'm not sure if I was drug tested in the hospital or not. I know that there are some drugs that only stay in your system for a short period of time, so if I was tested it my have been out by then.

Still no idea though.

 

[Nakamova]

I had my first seizure at 35. I can guess at a possible primary cause -- a head injury when I was 5 -- but as Robin says, what explains the intervening healthy years? I do have a pretty good idea of what my secondary seizure triggers were: At the time of my seizure I was under a lot of stress, hadn't slept properly in 3 days, and had only consumed a minimal amount of "food", primarily sodas with aspartame. It's been more helpful for me to identify those secondary triggers, rather than what might have been the initial insult to the brain.

 

[Meetz1064]

I am

like Epileric--I was born with my E. However, unlike him, I still don't know the cause of my E. I'm up to 4 types now, but am verrryyy well-controlled thanks to meds and a very strict diet.

Wish I could get rid of the meds, though. With the readings that show up on the EEGs, that's unlikely though.

 

[huskymom]

I didn't have any problems until I turned 40 and became anorexic. I guess you need food to supply the brain with nutrients and protein. Who knew?! Anyway, I was down to around 86 pounds and then I could no longer walk. Long and short, I sustained some brain damage and that led to the seizures.:roll:

 

[Endless]

We have no idea what caused mine. We have some guesses, though. I had infrequent seizures until I was in approx. my 40's. Then they really sped up. We think my father had seizures, too, though we can't be sure since he's passed on. Mine were probably caused by a combination of a predisposition due to genetics, and many head injuries over the years. The increase in seizures seems to coincide with a car accident I was in where I hit the side of my head quite hard. I had trouble thinking for over a year. The seizure increase started soon after. So kids, wear your helmets, and parents drive safely!!!

But there is no way to be sure. I guess I want to know just for curiosity's sake, but it wouldn't make a different in my treatment so I guess I really don't need to know.

 

[Endless]

Oh! I wanted to add that I'm investigating all the usual (and unusual) possible triggers for seizures, like low blood sugar, toxic exposure, food allergies and intolerances, low vitamins/minerals/amino acids, etc. We tried testing, and I'm doing elimination diets just to be sure. So far, nothing. But it's worth a try. Wouldn't it be great if that were the cause? Then the seizures could be cured! But I'm thinking... how do you undo head injuries and genetics?

 

[BuckeyeFan]

Just like most of the others in this thread, I have no idea where mine originated. I was a healthy 20 year old in good shape. Then WHAM, tonic-clonics. Looking back, there were probably some indicators that were never recognized. Possible even seizures in my sleep as a teen.

MRIs have shown no physical issues with my brain. May be related to a very mild case of cerebral palsy when I was born, a head injury when I was 15, toxic chemicals I worked around at the time. Who knows?

I defintiely agree with Robin about the threshold. I have learned that the cells that mis-fire exist in most people. In us, it is the inability of the brain to stop those errant signals from turning into a chain reaction that spreads rapidly causing all of our great symptoms. Most of the meds work at trying to stop the chain reaction. Many of the alternative methods seem to be directed more at stopping the orignal mis-firing cell.

 

[Blondie47]

The first seizure was at age 2.5 for my Dearest Daughter, and nothing else until the age of 12. Diagnosis: Multi focal epilepsy with simple partial seizures in the occiptal and frontal lobes.

First neurologist was a flake and we currently are receiving treatment at level four epilepsy center about an hour from our home.

The cause is believed to be from brain scars she obtained from her intrathecal chemotherapy treatments for Leukemia ( 19 months of age at the time). Theses were discovered by MRI after her first Occipital seizure.

This is the best site for research and getting answers on things! :woot:

We are currently doing neurofeedback as a complimentary therapy for Dearest

Take Care:e:

 

[Chrise]

Hi, all - I'm still a little new (husband has E, three seizures this year, he's 45 - first time he's ever had them).

Question: It seems that everyone (mostly relatives) is offering advice to us on the "cause" of his seizures - yet - the Neuro (and us) still aren't sure. I'm coming to learn that many folks really don't know what causes them (if you are otherwise healthy).

Do you all find that to be the case? Do you also have people (trying to be helpful, I know, but sometimes annoying) always sending you articles and information as to how to "cure" it or how to "truly diagnose" the cause of the loved ones' seizures? I have family convinced that if we don't try "X" we are somehow being negligent (and we don't believe "X" is the right way to go).

I'm all for new information all the time, but I think you get my drift -

Thanks - D in Dallas

Hi ddr1166,

I started having fits when I was 40, I am now 52, at the time I was under extreme stress at work, I've had every medical test under the sun privately, sadly nothing proven..!

I was advised privately(10 Years ago) there would be a cure for such a problem around now - Sadly Nothing..!

There is NO family history of such a problem, GP + private specialists cannot understand why...!

Biggest pain in the UK is you cannot drive for 12 months after seizure

Currently I'm doing very, very well, no fit for the last 5 years..!

Good Luck, hope it works out well for your husband, I know what he is just going through

warm regards,

Chris

 

[Chrise]

Hi, all - I'm still a little new (husband has E, three seizures this year, he's 45 - first time he's ever had them).

Question: It seems that everyone (mostly relatives) is offering advice to us on the "cause" of his seizures - yet - the Neuro (and us) still aren't sure. I'm coming to learn that many folks really don't know what causes them (if you are otherwise healthy).

Do you all find that to be the case? Do you also have people (trying to be helpful, I know, but sometimes annoying) always sending you articles and information as to how to "cure" it or how to "truly diagnose" the cause of the loved ones' seizures? I have family convinced that if we don't try "X" we are somehow being negligent (and we don't believe "X" is the right way to go).

I'm all for new information all the time, but I think you get my drift -

Thanks - D in Dallas

PS

Obtaining the corect level of epillem for your husband sadly could take a very long time -I am not a DOCTOR.!

A very sad fact, which you must not hide from, but sadly it took me 5 years..!

I know this news will hurt you, but please face it, do not try and run away as I did and suffer..!

I thought I was cured with the medication, then had a fit in car with my daughter in front seat, thankfully whilst stopped at traffic lights..

Very, very lucky, police car + ambulance behind me - THE TRUTH..!

Good luck

Chris

 

[Crystal11]

This sounds very familiar.
I was diagnosed along with my twin sis Danielle at age 6 with petit mal or possible complex partial seizures. Nothing was found on EEG at the time but neuro was sure of the diagnoses otherwise. Mom refused treatment due to the fear of meds. We were born three months premature and had a very traumatic birth.
Heart surgery are 4hrs old, no anastethia besides local where the surgery was. Under developed everything including CNS obviously and dying and in total cardiac arrest with resusitation. Was oxygen dependant for three or four months while in NICU.
Dani and I made it but we did have some troubles from it.
All of our doctors tell us that many of our problems, including blindness, deafness (residual left) joint and muscle problems (similar to CP) and Epilepsy are most likely caused from premature birth. You don't come out perfect when you're three months too early in the 80s.
Now-a-days you can be three or four pounds and have a great chance of being okay.
I weighed only 1lb 10oz..

My Mom was in denial of our seizures since they "aren't bad enough for meds" as they as shorter 45sec Complex Partials. So she thought we would outgrow them naturally and not really need treatment. Later on, we found out from a good neurologist that because Mom didn't get treatment until we were older (13) that our seizures will be harder to treat. I can't really be too upset with her since she was still a young adult and research and info wasn't so available as it is now with internet etc.
I wish we would have recieved treatment at an early age but my seizures got worse over time as did my hearing and vision. So now they are 45sec-3min seizures and I take Lamictal XR and Keppra XR.

Mom and my Mom's friend both would send us a few articles here at there. They were personal stories of people with Epilepsy and how they overcame things. It was nice to read those stories but I felt like they were doing it because they felt sorry for us.
The same thing would happen reguarding our vision/hearing impairment- almost like they were trying to make us feel better about things by reading others' stories. I appreciated knowing that others are dealing with similar issues but I always felt "well you aren't doing so well so read these" type feelings. I don't know if it makes sense or not- but I felt that Mom and her friends were constantly talking about it or thinking about it feeling sorry for us and wondering how we would make it in life.
I am an accomplished musician of 20 years with my twin Sis and no matter what our disabilities are like, we continue to do what we love and we surely don't emphasize our disabilities to the public or our audiences. We want people to see us for us, not as twins with vision/hearing impairment and epilepsy.
We were on the front page of the Austin American Stateman in May 2001 I beleive and they used our disabilities to make it almost a pitty story and I just didn't like it at all. It talked about our music and our abilities and our two CDs we have out- which is awesome to be able to share with people- but the "have pitty" part wasn't my favorit at all.
They even described a seizure I had while in a lesson in Orientation and Mobility for the blind- outside downtown learning how to travel independantly in high school.
Why oh why would you write about a seizure someone had- especially soomeone that is on the front page of the capitol of Texas' main newspaper!

If you care to have a listen, go to Youtube.com and search for channel names:
MsMotif6 (me)
thesynthfreq (Sis)

So both of you take care and be safe.
Crystal and her guide Umbro.

 

[knothing]

I was going to a Neurologist and he could not identify the type let alone the cause and for the first year after the second tonic-clonic as an adult I educated myself. Then after a breakthrough seizure on Keppra he and I both parted ways and I was fortunate enough to get an Epileptologist (Neurologist specializing in Epilepsy/seizure conditions). I kept my research to myself during my first exam. He knew the type and probable cause in 1.5 hrs. I have Temporal Lobe Epilepsy and the cause. My cause was my own fault at the age of 4. I went down some stairs when told not to and ran into someone going down the steps with an arm load of stuff. I fell and hit my head right on a concrete floor. They only knew I was alive because I went right into a tonic-clonic. I had 4 of those in 2 days and then I had deja vu and jamais vu seizures my whole life. I thought it was normal and at the time(and still today) most people only know the tonic-clonic or grand mal.

I understand how you both feel with everyone wanting to help and think they know the cure. I have explained to as many as possible so they may understand part of the roller coaster this can be. My wifes family normally would just say hi and sometimes ask how things are going but now it is a constant how are you feeling. Eventually most people stop offering the rumors of who got cured by what.
My wife stands in your shoes. She found the Epileptologist and she helped me make sure I took my meds on time. She even fields as many questions as possible so I don't have to. It is rough on both of us but hand in hand we go dealing with the issues.The best I can say is working together has really helped and we choose the treatment plan together .

 

[ddr1166]

THank you all so much for the input. It is a roller coaster ride, but we'll keep moving along. It helps so much to know you're not alone. Cheers, D

 

[Elsie]

I know how helpful it can be to know the reasons for things.

I don't have a reason for mine. I am different from entire family. Braces, allergies, E, corrective shoes growing up, noone but me.

I did have a sledding accident at least a year before my first seizure. Ran into a telephone pole, hit the top of my head, flipped over and off and hit the back of my head on pavement. I was unconscious for a bit while I was pulled home on the sled.

But no tests ever came up with an injury, and I've even had some type of MRI.

I have lots of guesses, this accident, low blood sugars and nutrition problems. Who knows. It sort of haunts me because that's my personality, always needing to know the why's of things in order to deal with them. I've spent my lifetime just trying to let that all go and simply deal with the problem.