it rants, it raves

[jeofsky]

Sorry for ranting already even though I'm new...it seems that there are a lot of posts suggesting that epilepsy is something that can be treated by CBT or other behavioral modifications. And that people can use their minds to prevent a seizure or to bring one on. Also, that seizures are a physiological manifestation of some earlier trauma. LOL my life was SWEET before my first seizure!!!!!!!!!!

This makes me feel like any seizures I've had are not due to a biological syndrome, but some kind of problem in my own behavior, a problem that is caused because everything in my life is out of balance. The only thing I know for sure is that if I am on the wrong med, or not on meds, I could go into status. I can't exactly get some acupuncture, listen to music, and get neurofeedback if I'm unconscious and twitchin'....

Another thing people do is generalize when they use the words "epilepsy" and "seizure" - like, "This method totally controlled my seizures!!!! You should try it!!!!" I think if there's anything we know for sure, it's that there are many types of seizures and of diagnoses. My epileptologist said I will have to be on seizure meds probably the rest of my life. That's fine with me. It's probably not the 100% organic, healthy, Eastern medicine way of harmony and balance...but it's better than having seizures...

[Bernard]

Hi jeofsky, no worries about ranting any time you feel the need.

Anti-epileptic drugs only work for about 40% of people with epilepsy/siezure disorders. You are lucky to be in that group.

For everyone else, doctors generally don't delve too deeply exploring all the options that are out there - many having been researched in medical/scientific studies even.

There are a lot of people who have had success with alternatives and there is nothing wrong with telling people about them. No one here is claiming that any therapy/approach is "the best" or "guaranteed to work". It's just about informing people of options that they can explore.

[RobinN]

..and for some (my daughter included) the side effects of the medication is so SO TERRIBLE, that an occasional seizure was better than dealing with the side effects on a daily dose.

It is my belief that there are organic reasons for many with seizures. I have witnessed a drug being offered as a first course of action. When in reality there are causes that should be looked into, but are not. I will admit that I am one of those that has the out of balance belief. I see it with my daughter. From the most basic of bodily functions, to nutrition, intake of fluids, and thought patterns. That is why I am turning over every stone that I can. Anything and every thing that makes sense to her situation alone. I post my thoughts for others to possibly see a connection to their situation, and for some it makes sense.

I want my daughter seizure free and not on meds. Vitamins I will accept as they do not cause, suicidal thoughts, vision loss, muscle aches, or memory loss. I believe the alternatives that I have found (most here at CWE) are working. She has gone from 5 seizures a month to 1 this month. I have a few more stones to turn over yet....

... for me the doctors that I have come in contact with, are not in the stone turning business.

[speber]

As far as music helping me goes, I happened to basically get LUCKY and catch on to this fact.
It helps IMMENSELY but hasn't cured my epilepsy nor do I expect it to.
I do, however, feel it's very much worth looking into since I am older and have run through most of my anti-epileptic drug options!
Anything is better than nothing at all...and music is WAY better (for me anyway) than just anything!

To each his own!

We are all here to share and help each other.

[BuckeyeFan]

Hey Jeofsky!

I got that same feeling at when I first joined the site. However, I needed the support and it was there for me. Since I have opened my mind to these other possibilities.

Don't get me wrong, I am not running to the bathroom to flush my pills, but I am interested in hearing what they have to say.

Robin's approach is about as opposite from my instincts as it can be. Yet, as I have read her postings, I realize that she has not just jumped into this blindly. She is constantly researching her ideas and turning over stones. It is that kind of passion that may eventually find a cure for E.

Speber is on meds just like us. His music helps me "feel" better. I don't know if music will impact my E, but I do know it helps with the side effects of my meds.

Bernard is a wealth of knowledge. Again, don't confuse his passion for helping his wife as trying to push anything on anyone else. Hopefully we all have our heroes to help us through our battle with E. He is Stacy's hero. His information on neuro_feedback is something I would have never found through my neurologist.

I guess the bottom line is, go ahead and rant. That is one of the reasons we come here. You are always welcome to voice your opinions and I am sure you will find both agreement and disargreement. Thus far, I have not seen anyone take it too personal.

I have enjoyed your thoughts in some of your other posts and hope to continue to hear from you. Other than moderation to protect the site, this is a pretty free flowing exchange.

[Birdbomb]

Welcome Jeofsky

If there was only one cause of epilepsy and everyone reacted the same way to treatment, then the answer would be very simple. This site would not need to exsist.

People are different

Infinate number of reasons for seizures

Personal choice and free will keep us busy!

Rant away!

[alivenwell]

If I've learned anything from this disability, it has been that there are many types of seizures, and likewise, many different reactions to the epilepsy. I've dealt with some outright jerks who mocked epilepsy and used it for their personal gain.

I've dealt with people who don't really care about it.

And there are those who accept it, may be not right away, but they are easier to confront with this disability.

Then, we all have the complexity on top of that to find the right medication and lifestyle to try to over come this as well.

This is just so incredibly complicated sometimes. And, overwhelming.

This site has helped me cope with the ups and downs of this disability. I hope this continues to grow and increase in membership.

[brain]

Rant as much as you want!

Unleash it all! Unravel all your
fury! As one poster (there ought
to be a T-Shirt) quoted: "Epilepsy
is Hell!"

No further truth that that! We've
all been there; there's even Caretakers
who are ready to pull their hair out!

WE understand!

There's times I pound my own pillow
because I HATE IT SO MUCH and I
break down and cry out of mere
pure frustration (but that was before
I understood it all, what it was, before
anyone explained anything to me -
it was what my neurologist told me to do,
go beat up your pillow).

And sometimes like my other neurologist
(his partner) had advised me to do,
was to take a nice warm (not hot)
shower, in my bathing suit, and then
go outside in the backyard on the
lounge chair (this was summer) and
relax. But I spent most of my time
in the backyard --- SULKING!

I could have used a "Padded Room"
if there ever was one back then!

SO UNLEASH IT ALL!

I'm ALL EYES ... and I UNDERSTAND!