Is there a stigma with alternative therapies?

[speber]

Do you think there is a stigma associated with alternative therapies? Are they not receiving adequate 'attention' or funding because they are not socially acceptable? Do you care? If so, what does it take to overcome this?

[POSITIVEPERSON]

Yes I do believe their is a stigma,But at this point in my life I couldn't give a crap. I am
doing whats good me and what gives me quality life!!!!!!!!!!!!!!!!!!

Its my body and its my choice!!!!!!!!
I would love for the homeopathy to be researched by the epileptolgisits.

But until it is I will make my own path in this world !!!!!!!

Riva

[BIGMAN131307]

At this time I'm not sure what to think. Some treatments/therapies seem to be working in some places, but other don't seem to be using them. Maybe these others don't know about the treatments/therapies, or they just don't care. My previous neurologist would possibly try the alternative therapies if he felt I would benefit from them. But my current neurologist wouldn't touch them with a ten foot pole, unless he has seen evidence that these alternative therapies work.

It's like trying to slide a triangle block into the square blocks hole. You know it doesn't really belong, but with the right angle it should fit inside.

[Bernard]

I don't think stigma is the right word to characterize western medicine's consideration of alternative therapies. The system is built around drugs (and more recently medical devices). This is where the money flows for investment and research because there is a return on the investment.

Money flows much slower for natural or alternative treatments because there isn't any return to be realized. It's business. My

[brain]

I perceive there's a stigma involved.
There's too many knife-happy or
med-happy Doctors out there;
who wouldn't want to be bothered
with the other alternative options
or therapies that can work or may
work. I believe patients should be
given options and abilities to elect
and select various methods and
treatments available.

[speber]

I think its a little of EVERYTHING you guys have written and more.
Many times it can depend on who you are talking to...how they were 'raised' to deal with things (some can't imagine anything BUT an anti-epileptic drug from a bonafide doc being worthy of ANY consideration..."it just ain't done!")...and whether or not their 'community' allows them to 'think outside the box'.

I personally agree with POSITIVEPERSON in that I don't care what others think about MY choice......it's MINE.

I also, unfortunately, agree and totally understand where Bernard is coming from........money talks...period. And that's a cryin' shame because a LOT of REALLY interesting research is getting underfunded in my opinion.

I wanna see BREAKTHROUGHS in epilepsy research. I'm 40 and I ain't gettin' any younger. To be honest, I really don't care WHAT area of 'alternative research' at this point in life. It would be nice to be seizure-free (or at least closer), but I am REALLY enjoying seeing accomplishments of others as well! ANYTHING TO GIVE US OTHER OPTIONS! Color me a 'flag-wavin'-card-carryin'' member of the 'Bout Damn Time for a Change' movement...
(we're making bumper-stickers...JK)

A rant...yes....but I want everyone to know where I stand on this one anyway....
.....: twocents:: twocents:

...don't let someone---ANYONE---else dissuade you in YOUR personal goals....

DO THE RESEARCH-----FOLLOW YOUR INSTINCT/GUT/HEART!

AAAAAAAAAGGGGGGHHHHH........my brain\hands hurt!

[POSITIVEPERSON]

Speber I was one of those who only beleived in anti-epileptic drugs till a dr poisioned me and didn't listen to one word I said 78-79 . He was going thru a divorce and couldn't cope and I was controlled but lost my period,my hair my nails,my body ,held water . And I went for my first treatment of acupuncture and the acupuncture helped me more than the anti-epileptic drugs, and the Drs and that was the beginning of me using alternative therapy and not caring if the drs laughed or made fun. What mattered was my quality of life.
Riva

the dr was so rude while treating me he said I would save on tampax and manicures etc

[speber]

...not worthy of time it would take to 'key' their car.
Good for you.
Their actions make me believe they will probably be in another line of work before long...or at least in serious debt due to malpractice!

[Zoe]

I had toxic reactions to anti-epileptic drugs many times, I finally quit using them and managed to get them under control without drugs in 1998.
Forget about any stigma. Do your research and use whatever is working for you. After many studies, there is more acceptance of some non-drug approaches to managing seizures than there was ten years ago. Some clinics are now offering options that can be used along with medication such as yoga and relaxation training.

[RobinN]

That is fine to say when it is your own body you are talking about. If you are a caretaker of a child, you are considered a bad parent if you do not follow traditional medicine. You might be able to convince the medical team you are working with, but ER doctors will give you a hard time. In addition to medical personel, you also have schools that will pin you to the wall if you are only willing to consider alternative therapies. Everything must be documented and accounted for. I understand why, but when dealing with a child the situation can change from day to day, and one must be able to rock with the rolls. It isn't a cut and dry situation. Friends are open minded so that is helpful, and allows for a sounding board in which to practice your beliefs before taking them to the big guns.

The first question the EMTs ask... What med is she currently taking?
The first question they ask in ER.... What med is she currently taking?

[POSITIVEPERSON]

I Wasn't Speaking Like A Parent. I Was Speaking For Myself And My Life Experiences.

Riva

[brain]

The first question the EMTs ask... What med is she currently taking?
The first question they ask in ER.... What med is she currently taking?

Those questions sound awfully familiar;
I swear it's Deja Vu!

[RobinN]

Yes Riva.. and I know that it is okay to make many choices when it is your own condition you speak of. It is easier to stand firm.
However, when you are the caretaker, there are others to answer to. There can be severe consequences for a parent, and you must have all of your P's and Q's in their place or you could get called on the carpet for not bothering to follow a medical plan, designed by the same doctors that have lunch with the pharmaceutical reps.

[skillefer]

Yes, I think that there is a stigma. The problem is, epilepsy research isn't financed to the same extent that other problems are. Let's face it, it's not exactly sexy or glamorous. It has nothing to do with genitals, so it doesn't get funded. Our disorder is often hidden, and can be controlled for long periods of time for some people. Most people probably know or interact with someone who has E, but don't even know it. In our culture, we have a pill or liquid for everything. From tummy aches, indigestion, headaches, on up. Our culture doesn't look at curing the source...we cure the symptom, or make the symptom easier to live with. Let's face it, we tend to dislike discomfort. And we are a society based on instant gratification. So when people suggest alternative therapies, the average person looks at them like, " But you have a pill that works just fine. Why would you want to quit taking your medicine?" They don't bother to think that maybe the side effects are something that we really don't like, but tolerate. And that's true not just of those of us with E, but with people who use alternative methods for dealing with diabetes, menopause, and pain therapy just to name a few. When our culture starts to focus on causes..and not symptoms, maybe alternative medicine will find it's place. Till then, I doubt it.

[jeofsky]

my current Neuro wouldn't touch them with a ten foot pole, unless he has seen evidence that these alternative therapies work.

neither would I, not as a sole form of therapy anyway. I've had good luck that medication has controlled my seizures. It's something I can take twice a day and then go on with my life.

But everyone is different, and you have to do what works best to control your seizures. That's my goal anyway.

[tinasmom]

There definitely is a stigma. There are good doctors that will listen to you and work with you and then there are doctors that think you don't know what you're talking about. The health system that I work for has added alternative medicine. We have chiropractors, acupunturists and massage therapists. They call it complimentary medicine. I think they realized how much more money they could make with these added services. If you think that your being overmedicated, you need to tell your doctor. If your doctor doesn't listen, then you need to try another doctor. I think that the elderly are extremely overmedicated.

[RobinN]

[BuckeyeFan]

I admit that I have a personal stigma against alternative therapies 'in general'. If you look around, everyone malady has a sure fire, no problem cure being promoted by someone. Often these same people are selling whatever it is they advocate.

Now that is NOT to say that I am open to alternatives. Every new approach to treatment was considered an alternative at one time or another. Yet, many have succeeded, while others have failed.

What I find different about the alternatives being discussed here, is that no one is promising a cure and no one is asking me to send just three easy payments. These seem to be real discussions of alternatives, plus the sharing of personal experiences.

The other HUGE factor is the referencing to investigate for ourselves. Even the stronger advocates on the site are not claiming to be experts on the subject. They are simply sharing what they have read or experienced. Some of these sound very logical to me and have raised my interest as I don't think I will reach an old age taking Dilantin.

Still, I read most of the alternatives with a critical view. I know our medical system lacks a lot, but I do not think that their is some over-riding systemic issue with it not looking at new treatments.

My brother works for Glaxo (fairly high up). His wife has MS. He is trying everything available to help her, not just meds.

[spinnymommy]

I haven't had epilepsy very long. I understand on a mental level but not on an emotional level. I don't mind trying things that I am sure will do no harm (like a diet suggested for seizure control and approved by my diabetes dr) or vitamins or mineral supplements again, approved by my dr.

I talked the dr into taking me off all meds once (at least that is what my husband and dr say, I have no memory of it) When I was off meds, I had lots and lots of seizures.

Now they are all but gone although I am on a large dosage of Lamictal. As far as I can tell there are no side effects. I worry about the long term damage, but I also worry about the shorter term danger of seizures.

For now I will stick with traditional treatment and only try other things that I am sure can't do any harm or interfere with my med working.

I don't know if there is a stigma with the alternative meds or not. This is the only place I discuss my epilepsy, and here they seem to be accepted and supported because of your experiences. (which counts more than what drs or studies say)

[speber]

I don't know if there is a stigma with the alternative meds or not. This is the only place I discuss my epilepsy, and here they seem to be accepted and supported because of your experiences. (which counts more than what drs or studies say)