Just my thoughts . . .

[masterjen]

Shoot me down if you want to, but since we all voice our opinions:

I think we all need to realize that what is appropriate management for one person is not necessarily appropriate for another. While I think members who discuss managing their seizures entirely by alternate (ie. non AED) routes, I do think every now and then it would be safest if they specifically say that what they are doing is not necessarily appropriate for everyone. All of us here want to stop seizures and stop medication side effects, including some young enough and/or desperate enough - which would likely have been me just 5 years ago - that they might not follow the safest route (eg. consulting their doctors) in implementing alternate seizure control methods.

I admire those who have the courage to discard their medications and try alternatives, and I wish them seizure freedom, safety and good health.

 

[Nakamova]

From the CWE section "About This Site":

No member of the forum should be considered as a medical professional unless they are clearly identified (vetted by the site administrators) as such. This site does not dispense or publish medical advice. All published information, recommendations and opinions are offered for informational purposes only. Epilepsy patients, visitors and members are advised to discuss their care (and any information published on this site) with their own doctors.

I am thrilled when CWE members report that they have been able to safely control or reduce their seizures by any means: Meds, surgery, VNS, neurofeedback, dietary adjustments, lifestyle modifications, etc. With all those treatments (not just the alternative ones), it's important to specify that Your Mileage May Vary. Casual googlers or new members to the site may not realize this, so it doesn't hurt to repeat it from time to time, even if it feels obvious, irrelevant or tedious to do so. I know that we all wish each other well and offer support and advice with only the best intentions. The advice is incredibly valuable and helpful. Whether on the dispensing or receiving end however, proceed with caution, and remember that our histories, diagnoses and prognoses are all highly-individualized.

 

[Cint]

I think we all need to realize that what is appropriate management for one person is not necessarily appropriate for another. While I think members who discuss managing their seizures entirely by alternate (ie. non AED) routes, I do think every now and then it would be safest if they specifically say that what they are doing is not necessarily appropriate for everyone.

:agree: I've been saying the same thing for years now!

While I am one that has had a LTL + the VNS surgery, I know it isn't going to work for everyone, as the brain surgery was a huge failure for me! And while many others have blasted the VNS, that is what has saved me!
But I still need to take AEDs, too! For me, going off meds would literally kill me.

That's my story and I'm stickin' to it!!

 

[Fedup]

You are very right we do need the appropriate treatment and medication for our seizures and as you say what is appropriate for one is not necessarily for another person, so care needs to be taken and information carefully processed.

If someone were to tell people what to do that would be very wrong but to offer advice for people to look into is a good idea, broadening one knowledge is a good thing but that does not mean we do it. As each one of us realises we are individuals in every sense and we do not and should not tell others what they should do. I believe that each of us realise this and would not take kindly to being told what to do, we have hard enough time with our doctors and neurologists.

 

[AlohaBird]

Of course there always needs to be the caveat emptor and the YMMV. And, no, it doesn't hurt to repeat those occasionally.

That said, as we always stand by each other through "rough patches", we shouldn't be hesitant to celebrate one another's triumphs too. If someone is reporting success with something even if you don't feel that treatment is right for you, taking a minute to do the "happy dance" with them anyway costs nothing and perhaps we all can learn something together.

If however, anyone reporting positive and uplifting news it met by a wave of negativity (e.g. "Don't do anything rash. Consult your doctor cuz they know everything, right? That's dangerous", etc.) then why would anybody bother posting?

Just sayin'. Being careful is all well and good but let's not turn into a bunch of "Negative Nellies" in the process.

 

[valeriedl]

I think we all need to realize that what is appropriate management for one person is not necessarily appropriate for another. While I think members who discuss managing their seizures entirely by alternate (ie. non AED) routes, I do think every now and then it would be safest if they specifically say that what they are doing is not necessarily appropriate for everyone.
I admire those who have the courage to discard their medications and try alternatives, and I wish them seizure freedom, safety and good health.

I agree with this and it's what I say in posts. Just because one thing has worked for one person doesn't mean it's going to work good for everyone.

My sister in law has epilepsy and she is trying to control her seizures using her diet and things like that because she doesn't want to take medicine but it's not working too well. I'm not going to sit her down and yell at her saying "You have to start taking medicine because it's the only thing that is going to work! The medicine that you should be on is Keppra because it does good for me!" If she want's to go the non-medical route then that's fine with me.

I sort of compare using your diet or medicine to people who have diabetes. My dad has diabetes and is controlling it just fine with his diet. But I know there are many others that aren't able to do it that way.

While I am one that has had a LTL + the VNS surgery, I know it isn't going to work for everyone, as the brain surgery was a huge failure for! And while many others have blasted the VNS, that is what has saved me!
But I still need to take AEDs, too! For me, going off meds would literally kill me.

Exactly the same with me. I was unable to have brain surgery and had been on several different meds but nothing was doing much so my neuro told me about the VNS and asked me if I wanted to try it. He said that it may not work by completely stopping my seizures only lowering the number that I have. He said that I would probably still have to take meds along with it.

It has lowered the number of seizures I have a month a ton. They don't last as long and they aren't as bad. If I feel a seizure coming on I'm almost always able to stop it by using the magnet. I am also taking meds along with it.

I give all you guys a two thumbs up who have had brain surgery wither it's worked or not. I don't think I'd have the guts to let someone operate on my brain so I'm not going to say don't do it.

 

[AlohaBird]

I think some where in the middle a balance needs to be struck.

On the one hand I don't want this forum to be like thecurezone where the hair brained snake oil of the week catches fire and pretty soon everyone is chugging a gallon of iodine a day to cure everything from toenail fungus to cancer.

So a heathy degree of skepticism, caution, and plain old common sense are great.

On the other hand though, I don't want to see this forum shut it's collective mind to anything that does not come in a Rx bottle officially sanctioned by a person in a white coat.

If a person presents a reasonable case for a particular therapy to be considered the response should be , "Thank you. That is interesting. I will look into that some more. And BTW, Yay! That's terrific that it's working for you."
A "reasonable" case would be some background research, some logical reason why this might help, and some evidence that it does.

Reasonable does not have to be large scale double blind placebo controlled and published in JAMA.

Say, for instance, I think that turmeric is really helpful. I could quote you some studies, quote you a bit of Dr Perlmutter's books, and tell you about how well I've been sleeping since I started taking it.

If all that comes back at me is "That is not rigorous scientific evidence!" and "That is dangerous!" <sure if you are taking rat poison a.k.a. warfarin there could be a bad interaction. I think that is on the rat poison though, not the spice.> then this board comes off sounding very closed minded.

One of the things that attracted me to this community in the first place is Bernard's wonderful chart about alternative therapies.

All I ask is that optimism, hope and the spirit of inquiry not be smothered by negativity, gloom, and giving up.

 

[MichaelJO7]

I am tired of the glorification and trust that we place in doctors, (and police, and government). We humans are self-centered, self-seeking, self-preserving. There is a conflict of interest inherent in the doctor-patient relationship, as also exists in the insurance industry, and other industries as well.

It is foolish, I think, for us to put our trust in people who have not earned our trust just because they are supposed to know how to help us. A medical degree does not guarantee good judgment, or humane treatment. A medical degree does guarantee that doctors know how to think.

Elizabeth Cohen, medical correspondent of CNN if I am not mistaken, mentioned in one of her books that 200,000 people die every year in the US from either infections (in hospitals) or doctor mistakes. Those are the ones that are documented.

I think the medical system is broken. Not one doctor that I have contacted regarding their mistakes concerning me has accepted responsibility. For over twenty years, and today as well, they continue to make mistakes with me, serious mistakes.

I believe we can learn much more than we think we can. If we are too fearful of going alone (without doctors), don't do it. It is a process. Fear does eventually succumb to knowledge and experience. I recently tried reading Dr. Orrin Devinsky's Alternative Therapies book. I quit reading it because he did not understand even the basic science of many alternative therapies, or dare I say, of the human body. Mind you, I used to respect and admire him. The appearance of humility was there, but in the end the double blind placebo controlled study, rather than sound reasoning, and a good understanding, that governed his thinking.

There needs to be greater equality among patients and doctors. Power should flow from the strong, to the weak. In the US, it does not do so. It almost always flows up, strengthening the strong. It is backwards.

Wisdom gives life to those who have it.

 

[Cint]

I am tired of the glorification and trust that we place in doctors, (and police, and government). We humans are self-centered, self-seeking, self-preserving. There is a conflict of interest inherent in the doctor-patient relationship, as also exists in the insurance industry, and other industries as well.

It is foolish, I think, for us to put our trust in people who have not earned our trust just because they are supposed to know how to help us. A medical degree does not guarantee good judgment, or humane treatment. A medical degree does guarantee that doctors know how to think.

:agree:. Humans are self-centered and everyone seems to think they know what works best.

I think the medical system is broken. Not one doctor that I have contacted regarding their mistakes concerning me has accepted responsibility. For over twenty years, and today as well, they continue to make mistakes with me, serious mistakes.

The medical system in America IS broken. I developed Type 1 diabetes from a drug that one dr. prescribed to me. Now I have to do insulin injections several times a day. But it was the pharmaceutical company who was at fault. And I did something about it. I went after them with a lawsuit. If you continue whining and don't do a thing about it, NOTHING will ever be done. Mistakes will continue to happen if you fail to speak up! You can say NO to a drug if you want. I have told my neurologist several times I won't take an AED anymore because of the miserable side effect(s).

I believe we can learn much more than we think we can. If we are too fearful of going alone (without doctors), don't do it. It is a process. Fear does eventually succumb to knowledge and experience. I recently tried reading Dr. Orrin Devinsky's Alternative Therapies book. I quit reading it because he did not understand even the basic science of many alternative therapies, or dare I say, of the human body. Mind you, I used to respect and admire him. The appearance of humility was there, but in the end the double blind placebo controlled study, rather than sound reasoning, and a good understanding, that governed his thinking.

We all can learn, like you say, it is a process. I've learned what I can deal with, what my body can handle. Fear is a matter of the mind. I've read some of Dr. Orrin Devinsky's books. I don't agree with your opinion of his reasoning. He
does understand the human body.

Wisdom gives life to those who have it.

We all have bits of wisdom to share.

 

[masterjen]

There is a conflict of interest inherent in the doctor-patient relationship, as also exists in the insurance industry, and other industries as well.

This may be true in the US but fortunately much less (if at all) an issue in Canada. Canada, too, has its health-care related problems but because all Canadians pay for our health care system via taxes, everyone has equal access to basic health care (we do have extended health programs available that most people pay for through work, and get a group rate). Doctors are paid the same regardless of whether they write a prescription for a drug worth $20 or $200, and whether the drug comes from company A or B.

It does sound like you are very bitter toward the health-care system in the US and to the doctors in general that you have seen and I'm sorry you have had such a negative experience. I hope in your pursuit of a new doctor to oversee your medical care you find one you like.

 

[Cint]

I think some where in the middle a balance needs to be struck.

So a heathy degree of skepticism, caution, and plain old common sense are great.

:agree:

A "reasonable" case would be some background research, some logical reason why this might help, and some evidence that it does.

Reasonable does not have to be large scale double blind placebo controlled and published in JAMA.

Say, for instance, I think that turmeric is really helpful. I could quote you some studies, quote you a bit of Dr Perlmutter's books, and tell you about how well I've been sleeping since I started taking it.

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.

If all that comes back at me is "That is not rigorous scientific evidence!" and "That is dangerous!" <sure if you are taking rat poison a.k.a. warfarin there could be a bad interaction. I think that is on the rat poison though, not the spice.> then this board comes off sounding very closed minded.

Sorry if this does sound closed minded to you, but I NEED scientific evidence! Some of us are scientifically-inclinced to look at our brains after all other methods of treatment have failed. I want to know how it all works inside, what makes it work, how my neurons connect, disconnect, etc.

Dr. Devinsky, Dr. Perlmutter, Dr. Steven Schachter and famous neuroscientists don't have those answers, yet.

All I ask is that optimism, hope and the spirit of inquiry not be smothered by negativity, gloom, and giving up.

I haven't given up hope!

 

[masterjen]

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.

Sorry if this does sound closed minded to you, but I NEED scientific evidence! Some of us are scientifically-inclinced to look at our brains after all other methods of treatment have failed. I want to know how it all works inside, what makes it work, how my neurons connect, disconnect, etc.

Dr. Devinsky, Dr. Perlmutter, Dr. Steven Schachter and famous neuroscientists don't have those answers, yet.

I haven't given up hope!

:agree:

 

[lindsayschu2]

Well I'm always going to weigh in on balance in all things. Doctors know a lot--more than us in most things medical. But they also don't spend much time at all learning about the effects of supplements and deficiencies, food allergies, or tracking side effects and their impacts on our condition. Some good ones really do. Some bad ones really do not. I have had both, and ended up in the hospital because of a side effect I kept mentioning, believed was low potassium and was ignored. It did end up being low potassium, and I was lucky it didn't kill me. My new neuro would have listened and investigated. So--from my seat, I trust my doctor, but I also research, learn, and decide what other things I will employ that live outside of conventional medicine that will help me, but not without significant investigation on my part and checking with my doctor if at all in doubt. It has helped me go from constant seizures to much, much more occasional seizures. It's a partnership, and if we do nothing at all to advocate for ourselves and educate ourselves about our own conditions and watch for side effects, better our own chances for improvement, then we aren't being a partner in our own healthcare. Our doctors spend 30 minutes tops with us every six months. We spend every day with ourselves forever. That's my two.

 

[masterjen]

Well I'm always going to weigh in on balance in all things. Doctors know a lot--more than us in most things medical. But they also don't spend much time at all learning about the effects of supplements and deficiencies, food allergies, or tracking side effects and their impacts on our condition. Some good ones really do. Some bad ones really do not. I have had both, and ended up in the hospital because of a side effect I kept mentioning, believed was low potassium and was ignored. It did end up being low potassium, and I was lucky it didn't kill me. My new neuro would have listened and investigated. So--from my seat, I trust my doctor, but I also research, learn, and decide what other things I will employ that live outside of conventional medicine that will help me, but not without significant investigation on my part and checking with my doctor if at all in doubt. It has helped me go from constant seizures to much, much more occasional seizures. It's a partnership, and if we do nothing at all to advocate for ourselves and educate ourselves about our own conditions and watch for side effects, better our own chances for improvement, then we aren't being a partner in our own healthcare. Our doctors spend 30 minutes tops with us every six months. We spend every day with ourselves forever. That's my two.

I don't think any of us negate the importance of research, learning, advocating for ourselves and being in a partnership with our doctors about our health care. In fact I don't know of any people here who do not do these things. Again a difference in our health care systems or our particular doctors: as I mentioned in my post above, it is no loss to my doctors if we were to take a non-pharmaceutical approach to something because they are paid the same regardless. Also, tests they order does not influence their salary. For that reason, I know they have my best interests in mind when I ask about something I have read. I have a huge respect for my doctors who have put hours of research into coming up with the best treatment plan for me and continue to do the research to keep on top of latest developments around the world. The internet is such a small source of information, relatively speaking, as not all articles and research even make it to the online world.

 

[lindsayschu2]

I'm saying I'm willing to also make decisions to add to my medical care on my own as well. I don't always ask my doctor's opinion on every supplement I take. I usually let her know at my next appointment what I've done and she's pretty much always agreed with what I've done or not had any issues. I research the daylights out of everything first, but if I believe I've read enough to support it's use, I will try it. I've not had a problem with that approach and I do trust my own ability to make some of my own decisions.

 

[Cint]

Again a difference in our health care systems or our particular doctors: it is no loss to my doctors if we were to take a non-pharmaceutical approach to something because they are paid the same regardless .

I'm not so sure that many people realize the HUGE difference there is in our health care system, here in the U.S. vs. the rest of the world. Just last night on "60 Minutes", they featured a story on the high cost of cancer drugs. While watching, I thought to myself, it isn't just cancer drugs. It is the drugs I take, too!!


http://www.cbsnews.com/videos/the-cost-of-cancer-drugs-2/

And this battle between pharmaceuticals, docs and patients has been going on here in the U.S. for years. I am SO glad that doctors here are finally speaking up about the ridiculous cost of treatment for their patients. Now we as patients here in the U.S. can join in and help change the situation.

But I will continue taking the AEDs, because they do work better for me.

 

[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.

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 NEED scientific evidence! Some of us are scientifically-inclinced to look at our brains. I want to know how it all works inside, what makes it work, how my neurons connect, disconnect, etc.

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.

Dr. Devinsky, Dr. Perlmutter, Dr. Schachter and famous neuroscientists don't have those answers, yet.

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 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.

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.

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


This is why I get so sick of the "sensible" mantra of "Talk to you doctor first" "Don't do anything without your doctor's advice and approval", "Work with your doctor. Don't go it alone".
Sounds good in theory but, IRL, it assumes one has a competent and available doctor.

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.

 

[MichaelJO7]

This is why I get so sick of the "sensible" mantra of "Talk to you doctor first" "Don't do anything without your doctor's advice and approval", "Work with your doctor. Don't go it alone".
Sounds good in theory but, IRL, it assumes one has a competent and available doctor.

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.

Well said.

BTW, I just saw Dr. Perlmutter on Dr. Oz, promoting his book. 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.

 

[MichaelJO7]

:
The medical system in America IS broken. I developed Type 1 diabetes from a drug that one dr. prescribed to me. Now I have to do insulin injections several times a day. But it was the pharmaceutical company who was at fault. And I did something about it. I went after them with a lawsuit. If you continue whining and don't do a thing about it, NOTHING will ever be done. Mistakes will continue to happen if you fail to speak up! You can say NO to a drug if you want. I have told my neurologist several times I won't take an AED anymore because of the miserable side effect(s).

In sharing my experience, I am attempting to do something about it. The more people know the truth, the more likely something will be done to promote it. My attempts to bring correction to the system have failed, so far. I wish someone had told me before I went through what I have so it would have been easier. I am trying to make it easier for the next person. Healing is supposed to come in the light.

I watched 60 Minutes a while ago do a story of children in the Gaza strip who had lost everything. There was a doctor there from the US, a good doctor. It was his job, and perhaps he volunteered, I don't know, to help the children find hope again. He did so by encouraging children to draw anything. What they drew initially were bloody images of their parents, brothers, sisters, dying during attacks from Israel. The doctor was very patient with the children. He did not tell the children to stop drawing those images. He asked the children to talk about them. As time passed, the darkness of some of the children was transformed into light and hope. One of the children decided to become a doctor, to help people. Some of the children had hope again. It takes time to know where people are in that process. Most of us lack spiritual sight to see that.

Many times our purpose is borne out of our pain. I always want something redemptive out of everything bad.

 

[MichaelJO7]

:
I've read some of Dr. Orrin Devinsky's books. I don't agree with your opinion of his reasoning. He
does understand the human body.

He did not understand what I hoped he would understand. He did not understand how acupressure, or acupunture could help. He did not understand how wrong structure affects blood flow. No blood, no life, wrong chemistry, seizures. He did not understand osteopathic medicine. He did not understand how bloodletting can help (or hurt) someone with seizures--it changes the body chemistry. He did not mention everything electric. Insofar as E is a electric problem, why not study physics and electronics to learn and observe how electricity functions--how it can be channeled, modulated, amplified, blocked, resisted, promoted, etc? What is capacitance? What is the saturation point (seizure threshold) How is an antenna constructed? Is is possible that we are attracting environmental electrical signals which are contributing towards our propensity to seize? Radio towers use oscillators to generate AM and FM waves. The EEG test uses essentially many oscillators to measure brain wave activity. The connection is obvious. This is my area of research. I know it has helped me.