Just my thoughts . . .

[AlohaBird]

:hugs:

Personally, I don't think gluten is the real issue. I think genetic modification is. I don't have evidence to back that up--yet. I just know definitively that certain strains of whole wheat cause me big problems. Many other grains don't.

I use turmeric; I just don't like the taste of it.

I think they are both important but, in the case of grains, the gluten came first causing a problem for some sensitive individuals and then the problem was compounded by GMOing, causing huge problems for a lot of people.

You haven't had one of my curries. Then you would like turmeric. You also can get it as a capsule.

 

[Cint]

He did not understand what I hoped he would understand.

Just because Dr. Devinsky doesn't agree and share your perspective, doesn't mean he doesn't understand. For god's sake, a person who goes thru med school to become a "head doctor" does study physics and the electricity of the brain. Geez.............
How do you think he could practice medicine if he had not studied these things?

 

[Fedup]

We all have our opinions and even then we can still be wrong, just because one spends time studying or years does not make them infallible nor does it make us. We must at the best of times agree to disagree such is life and the realisation that ability and understanding are two very different things, some are lucky and have the ability and understand otherwise some help is needed.

What each one believes is not necessarily what the other believes but we do have the capacity to understand this and learn that does not change our points of view nor should it. The help and snippets of information given by all of us allow us to make up our own mind and then to procure our own choice of agree or disagree. But never to make one believe the other, one better than the other, mine over yours.

There are big problems in the Irish health service as well as others I am sure we would all like to make changes and I have meet my share of arrogant, self centred people in all walks of life even doctors as all of us have but I have also meet the good and kind rare as they maybe. Goodness and kindness come from agreeing to disagree while we listen to each others point of view.

 

[Cint]

Dr. Perlmutter is a neurologist. I have no access to an epileptologist where I live.
BTW, turmeric is neuroprotective. I mentioned sleeping well because sleep is when I have seizures. Please don't trivialize another person's experiences.

I'm not trivializing your seizure experiences.

And you think I don't? That's why I keep doing research. My doctors have neither the time nor the inclination to do research.I haven't read Devinsky or Schachter yet but I really do think Dr. Perlmutter holds two HUGE pieces of the puzzle with Grain Brain talking about gluten and carbs and Brain Maker focusing on the gut microbiome.

I've done my share of research, too. That is how I know about Dr. Devinsky and other well known neuroscientists. I've read some of Perlmutter's. And that is why I go to a University hospital where they are doing research.

I don't think our medical system is horrible or broken or corrupt. I don't think it is a conspiracy I just think it is like the McDonalds of health care. Produce it faster, cheaper, and get it out to as many people as possible. Is it the highest quality possible, no. But it fills the basic needs and turns a profit.

The medical system in the U.S. is broken, IMO. If it is an all or nothing profit business, forget about the patient, it is a failure.

Personally I have had many horrible experiences at the hands of doctors and I think if we all started swapping those kinds of horror stories we could collectively come up with a doozy of a list.

I'm sure we all have stories to tell!

Does this make doctors evil? No, just human and fully capable of being any combination of mistaken, ignorant, uninformed, and pigheaded.

Just human is all!

I would LOVE to be able to pick up the phone and get advice from a doctor, one who knew more about my condition than I do.
It takes MONTHS to even get anybody on the phone to make an appointment which is then MORE MONTHS away. And then, if you do finally get in the same office with a white coated person, you get 15 minutes of their time and attention during which it becomes painfully clear that they might have read one article about ketosis 25 years ago and have no idea what a microbiome even is.

Sometimes you go it on your own because you have no other choice.

IMO, if it were a good dr., they would tell you they did not know and direct you to someone who did know. At least, that is what my endocrinologist does with me....
I don' have to go on my own with my gluten and carbs. My endo and my neuro work together, as I've said many times. And if you live in a place where that isn't possible, maybe you should re-consider.

 

[lindsayschu2]

I had a neuro a couple of years ago--I called him because I was having constant seizures, took three days for him to return the call. He said: "Well, you don't seem to want to go up on Topamax because of your side effect issues, and you can't go up on Lamictal because it increases your seizures. I really don't know where to go from here; I don't know what to tell you." I said "Well, I have some tegretol still around somewhere--I don't know, should I try that?" "Sure--whatever, try that"--CLICK. No referral, nothing. I found a second opinion doc on my own, who said tegretol was the worst thing I could do since it caused the same increase of seizures as lamictal for the same reasons and surely he knew that. There are terrible doctors who just don't care. I have increased meds, decreased meds, added supplements, done all kinds of changes on my own--with the advice and counsel of hours of research and thoughts from this group, cautiously and slowly, and in most cases had better results than that one horrible doctor who landed me in the hospital. I did this by necessity at the time. I do not blindly trust simply because they have a medical degree--that time is past. However, I have a doctor I DO trust now, because she has demonstrated she can be trusted, does care, and is incredibly knowledgeable. I turn to her for major decisions now. My trust has to be earned--it isn't granted because of a piece of paper.

 

[masterjen]

My trust has to be earned--it isn't granted because of a piece of paper.

Which is as it should be. I also don't blindly trust because of testimonials and no research, or because someone wrote a book, or wants to go on nation-wide television. I will read to increase my knowledge, but I do trust my doctors to make the final decisions and to offer their honest and unbiased opinions on what I have learned.

 

[Belinda5000]

There are plenty of people on CWE, who have had brain surgery and used drugs .I happen to be one of them.And I've had my periods were I've had a lot of seizures and gone a few months seizure free also. There are those whose seizures started when they were and when they were older , and unfortunately I was just two. I've been through hell myself and I have learned to live with it. I've been to many dr's probably a dozen or more actually. I learned that was life.

 

[Kgartner]

Unfortunately, not even the "experts" truly understand the brain. Epilepsy is still largely a mystery, and I'm sure when we understand it better we will find that there are actually reasons why one person's seizures respond well to a particular drug or therapy, while for another person it makes them worse. Until then we are all left with a kind of informed trial and error. Our family has been very very lucky to live 25 minutes from one of the best pediatric neurology centers in the world (CHOP) and have been blessed with caring doctors who listen and who take all the time with us that we need. I am so grateful. But I know that not everyone gets that kind of care (although you all deserve it ) and you need to work with what you have.

And the nature of epilepsy makes this all so difficult. In the past 2 1/2 months my daughter's seizures have suddenly gotten much better - she went from having 3-4 simple partials a week to having just 2 or 3 a month (and it's been almost 3 weeks since her last seizure which is the longest she's gone since July). We haven't changed a single thing about her sleep, diet or medication, and her stress level has actually been off the charts. As far as we can tell this is a completely random fluctuation in her epilepsy. However, if we had made a change before this happened I'm sure we would be attributing her lower seizure frequency to whatever we did, whether it was an alternative treatment or a new pharmaceutical. (As it is, the randomness makes me really nervous because I feel like it could end at any time - please keep intending that her seizure freedom continues!!)

There are real things that make a real difference to people. But sometimes it is hard to distinguish those things from the normal ebb and flow of the disease. This is why double-blind testing is so important and why I prefer to rely on those treatments (and I would probably be more willing to experiment on myself than on my daughter!). However - whatever works for you is awesome and you should keep doing it!!!

 

[Cint]

Which is as it should be. I also don't blindly trust because of testimonials and no research, or because someone wrote a book, or wants to go on nation-wide television. I will read to increase my knowledge, but I do trust my doctors to make the final decisions and to offer their honest and unbiased opinions on what I have learned.

:agree:

 

[MichaelJO7]

Cint, you're completely missing the point. Start by looking at the definition of a seizure according to the experts. The definition itself is flawed. If the definition of a seizure is flawed, the it logically follows that the understanding is flawed. Simple logic. I am not discounting Dr. Devinsky's education. I am not discounting his knowledge. I am discounting his ability to put it all together, particularly in my case.

Doctor's have a nasty way of not using deductive reasoning because it does not fit a specific test. I still consider Dr. Devinsky to be the best neurologist I know of.

When we were in school, we were orginally taught to solve math problems without a calculator, so we would understand how to solve the problem without a calculator. It was only after we demonstrated our ability without a calculator that we were permitted to use calculators.

In my experience, doctors are relying on the calculator (the tests they order) too much to solve problems. If the calculator says nothing is wrong, then nothing is wrong.

If, for example, a person has an infection, but does not have an elevated white blood cell count, then it is likely they don't believe an infection exists. An elevated white blood cell count only tells a doctor that the immune system is fighting something, or engaged. What if the immune system is exhausted? What if the immune system is underdeveloped.

In doctors haste to treat patients, they are missing a lot of information.

Another personal example--of the five neurologists that have seen me, including one Epileptologist, not one asked me if I ever had a concussion. (I have had about a dozen). What's wrong with this picture?

 

[Cint]

Unfortunately, not even the "experts" truly understand the brain. Epilepsy is still largely a mystery, and I'm sure when we understand it better we will find that there are actually reasons why one person's seizures respond well to a particular drug or therapy, while for another person it makes them worse. Until then we are all left with a kind of informed trial and error.

If you go back a few threads, you will see that is what I said. Research has been going on well before your daughter was born and will continue for years. I've been part of research with meds and VNS surgery.

And the nature of epilepsy makes this all so difficult............
... As far as we can tell this is a completely random fluctuation in her epilepsy. However, if we had made a change before this happened I'm sure we would be attributing her lower seizure frequency to whatever we did, whether it was an alternative treatment or a new pharmaceutical. (As it is, the randomness makes me really nervous because I feel like it could end at any time - please keep intending that her seizure freedom continues!!)

My seizures have fluctuated greatly, too. Recently I stopped the drug "Potiga" and my seizures haven't increased. I do feel much better. But I still need to take Vitamin B and D because of other issues. I do know, however, that circumstances for me could change any time, since I have had CP and TC seizures over the years.

There are real things that make a real difference to people. But sometimes it is hard to distinguish those things from the normal ebb and flow of the disease. This is why double-blind testing is so important and why I prefer to rely on those treatments (and I would probably be more willing to experiment on myself than on my daughter!). However - whatever works for you is awesome and you should keep doing it!!!

I have been one of those guinea pigs, so can see both sides. I do think for folks like myself and Belinda, we kinda get tired of hearing that something worked for one and suggesting it will work for all.

 

[Cint]

Cint, you're completely missing the point.

Which is? onder:

 

[AlohaBird]

If you are just wanting advice about sleeping, then maybe Dr. Perlmutter's quotes are reasonable. But for something as serious and life-altering as epilepsy, I'll ask an epileptologist.

I'm not trivializing your seizure experiences.

Oh, really?

And that is why I go to a University hospital where they are doing research.

Lucky you. And I mean that in all sincerity.

The medical system in the U.S. is broken, IMO. If it is an all or nothing profit business, forget about the patient, it is a failure.

I agree that it is far from optimal. I was just distancing myself from the conspiracy angle. Evil doctors who actively want us to be sick.

I don' have to go on my own with my gluten and carbs. My endo and my neuro work together, as I've said many times. And if you live in a place where that isn't possible, maybe you should re-consider.

Again, lucky you. Even in Southern California it was the same for me (The Kaiser HMO system in both places). The MDs there were equally unavailable, ill informed, and pig headed.

I do think for folks like myself and Belinda, we kinda get tired of hearing that something worked for one and suggesting it will work for all.

First of all, please show me one time when anyone actually said this.
Secondly, those of us who are still filled with a spirit of optimism and inquiry and hope for the future get kinda tired of your negativity, saying, "It will never work, nothing works, life sux." So I guess that makes us even, right?

Nobody is saying it WILL work for you but if someone is saying it DOES work for them, how about a little positivity instead of the wet blanket brigade?

 

[Cint]

Cint, you're completely missing the point. Start by looking at the definition of a seizure according to the experts. The definition itself is flawed. If the definition of a seizure is flawed, the it logically follows that the understanding is flawed. Simple logic

.
This is the most illogical thing I've heard in ages!

I am not discounting Dr. Devinsky's education. I am not discounting his knowledge. I am discounting his ability to put it all together, particularly in my case.

Doctor's have a nasty way of not using deductive reasoning because it does not fit a specific test. I still consider Dr. Devinsky to be the best neurologist I know of.

It sounds to me that you are not willing to hear him.

In my experience, doctors are relying on the calculator (the tests they order) too much to solve problems. If the calculator says nothing is wrong, then nothing is wrong.

If that is your only experience, then you need to find someone who knows a better way. When I first started having seizures, they were only SPs. The stupid dr. back then said I was hypoglycemic. Until I suffered a serious injury, then things changed. Same thing when I had was diagnosed with diabetes. I knew something was seriously wrong. I would not stop until I found a dr. who made the correct diagnosis. Just because they say nothing is wrong, doesn't mean it is so. Thus the reason, get a 2nd opinion. Or a third..........

In doctors haste to treat patients, they are missing a lot of information.

Another personal example--of the five neurologists that have seen me, including one Epileptologist, not one asked me if I ever had a concussion. (I have had about a dozen). What's wrong with this picture?

Did you ever offer that information? The docs I've seen have asked me that.
What's wrong with your picture? You haven't suffered from seizures as long as some of us that have been to hell and back.

 

[Cint]

Secondly, those of us who are still filled with a spirit of optimism and inquiry and hope for the future get kinda tired of your negativity, saying, "It will never work, nothing works, life sux." So I guess that makes us even, right?

I guess, so, if that is what you want! But I didn't say it will NEVER work, so please don't put words in my mouth.

Nobody is saying it WILL work for you but if someone is saying it DOES work for them, how about a little positivity instead of the wet blanket brigade?

How 'bout it!?

 

[AlohaBird]

Lighten up, Cint!

I was representing your (and a few other people's) general attitude any time someone tries to have a discussion about any potential non-pharmaceutical treatment.

Go on! I dare ya! Say something positive and encouraging once in a while. It won't hurt. Really it won't.

 

[Nakamova]

Hey folks, I think we've gone a bit off track. This particular thread isn't about who's right and who's wrong, and it's not about trying to change anyone's mind or attitude or commenting style. It's about being educated consumers of what we learn here at CWE.

Here endeth this thread (now locked). Folks should feel free to tackle some of the ideas raised here in other threads. I encourage everyone to be open-minded and supportive while doing so.