New to CWE but not to seizures

[skipp8]

Hi, I am grateful I found this place, the other similar forum was very "dead". I have already used the search function and found lots of great info.

I had my first grand mal seizure at 16, EEG revealed nothing, was put on Carbamazepine that made me into a zombie, stopped taking it after 3 months. No seizures until I was 21, went to see a doctor again, carbamazepine, no testing whatsoever. Saw a neurologist at a hospital who paid a lot of attention to me, lots of EEGs, visits every 3 months, no seizures. She gave me a prescription for Prozac and sent me on my way - she said I had neurosis and anxiety. All my seizures have been during stressful situations, after injury, during period. Another seizure at age 24 after I fell on slippery stairs, saw PCP, MRI - all OK, waited 3 months, no seizures OK to drive and I was on my way again. I had 2 diarrhea related seizures after that but did not see a doctor because I wanted to drive.

Now at almost 39 years old I got up at night to go potty and collapsed in the bathroom yet again, my husband said I was tense and jerking. I had alcohol and 2 hours later took 1/2 hydrocodone for my pain (I had stage III breast cancer, chemo, radiation - lots of pain). Hydrocodone makes me queasy but I take it when I am desperate. I vomited and had diarrhea after the seizure.

Went to PCP, got put on Keppra and gabapentin, waiting for neurologist appointment. I got appointment with one a month away but it's more than an hour away at a small community hospital in Wellsville NY. Rochester, NY is only 35 minutes away so I called for a referral to Strong Epilepsy Center (level 4). Thanks to this board I already found out that I should try to see an epileptologist.

I will continue to read the posts and educate myself. It's good to know I am not alone but yet sad that so many people are dealing with this stuff and having such hard time. Hugs to everyone and thank you for your very informative posts!

 

[Bidwell]

Welcome! This forum has good people and good information and I am glad you found it. I know I am just the first to welcome you, but I want to say -- first thing -- that whenever a question comes up that someone here might know about, give us a try. People respond and out of the responses a path often takes shape. In the meantime take good care of yourself!

 

[masterjen]

Hi, and welcome to CWE!
Getting to a good epilepsy center where epileptologists are located can be a bit of a commute, but generally well worth the time and trouble.
Good luck at your appointments, and keep us posted on how things go.

 

[skipp8]

Thanks Bidwell and masterjen! I do have questions (the problem with too much information on here is that I can't find exactly what I'm looking for since I don't know the lingo yet).

What thread or forum area has info about the diagnosis process, personal experiences?

What thread/forum area would have discussions about meds that allow driving and what is the process to get driving privileges back?

Given my breast cancer history there is a chance that the seizure was caused by brain mets - if that is true will the metastasis show up on MRI? Or could the met be too small to show on MRI?

 

[masterjen]

Your question about metastasis I can't answer to your case specifically, but I do know that MRI is the most common way to monitor for cancer spread. Just how much spread there has to be before it shows up on an MRI I am not sure.

Regulations regarding driving are different state to state in the US, and also vary among different countries. You would have to check with your local DMV to see what their rules are. It is all based on number of months without seizures, not which anti-seizure medications one is on (although your doctor can restrict driving privileges even more than the DMV if he/she feels the medication is affecting alertness).

Regarding your first question, there are posts related to those issues but I am not sure how to give you the links to them. You could try doing searches for topics like: EEG, MRI, video EEG, blood tests. Another way to look for information is to go to "The Kitchen" or any of the forum rooms, and just scroll through the topic listings until you hit one that seems of interest or relevance.

 

[AlohaBird]

Oh My Goodness.

As someone who has survived breast cancer (8 years ago) and dealt with epilepsy since 22, welcome. Come on in and take your wig off.

Chemo messes with just about everything in your body but it really does a number on your digestive system. There is a major link between digestive health and neurological health. Many doctors are referring to the gut as your "second brain".

The chemo is messing up your digestion by killing off friendly bacteria in your gut and throwing the balance that should be there out of whack. This is compounded when you have the runs. Gut flora again become even more off balance.

For more info on the gut-brain connection I would recommend the book Brain Maker by Dr. David Perlmutter. He also has a website which has a lot of great info.

Your concerns about cancer metastasis are real but take a breath. There are a lot of other things it could be mostly centered around your dysfunctional gut. Unhappy "second brain" means an unhappy "first brain".

Are you taking any probiotics? Might be a good idea to get things back on track.


I feel your pain but know that there is a life after cancer waiting for you. Stay strong.

 

[skipp8]

Thanks Masterjen - I found the driving restriction for NY state. That's good to know that neuro will not let drive if meds have side effects. I am very sleepy and dizzy on Keppra. I took Topamax more than a year ago for headaches and I see that it's also used for seizures. It had no effect on my headaches and I had no side effects from it, I wonder if the dose for headaches is the same as for seizures, I'd rather take Topamax than Keppra if it's good for my type of seizures.

Thank you Alohabird - and congrats on being 8 years cancer free. I will have my 2 year diagnosis anniversary a day after the MRI. I also believe that brain mets in my case are very unlikely, I had a head CT more than a year ago for headaches after chemo and it was clear- I'd much rather have epilepsy than brain mets. I am very intrigued about the gut connection since my husband says that my seizures are "butt" related (I much prefer the wording "gut"). I already saw that there is something about gastrointestinal upset and seizures and I will look into the sources you mention. I also saw something about pseudo seizures, I'll mention that to the epileptologist again since that was the opinion of a previous neurologist from 20 years ago. I don't take probiotics but my grocery store has them in the little fridge by the pharmacy. I wonder if just the yogurt with pro and prebiotics would work too.

Thanks again! I swear I am in information overload.

 

[skipp8]

They have the "Brain Maker" for Kindle so I am all set. You did not mention that it's #1 Best Seller in Nervous System Diseases.

 

[masterjen]

I took Topamax more than a year ago for headaches and I see that it's also used for seizures. It had no effect on my headaches and I had no side effects from it, I wonder if the dose for headaches is the same as for seizures .

I am on Valproic Acid for migraines and have no side effects. Topamax was a consideration at one point, and I was told that the dosage level of both of these medications when used for migraines is typically less than what is used for seizures.

 

[epileric]

They have the "Brain Maker" for Kindle so I am all set. You did not mention that it's #1 Best Seller in Nervous System Diseases.

I'd read a few reviews first before downloading it. I'd suggest reading it all but here's a snippet of the review from NY Mag:

Despite Perlmutter’s popularity, most mainstream medical authorities do not endorse the advice he dispenses. In Grain Brain, Perlmutter revealed “the surprising truth”: Gluten is a “silent germ,” and declining brain health can be blamed in large part on gluten-containing grains. Brain Maker, for its part, promises to help readers harness “the power of gut microbes to heal and protect your brain — for life” — it even purports to offer groundbreaking preventative measures and treatments for allergies, autism, Alzheimer’s, ALS, dementia, Parkinson’s, and cancer.

Perlmutter has always been unorthodox in his approach to medicine. For well over a decade, and long before he was a household name, he has claimed to offer his readers “miraculous” — his word — treatments capable of preventing or reversing all sorts of devastating medical problems. He has also claimed that supplements and “detoxification” regimens — available for purchase on his various websites — are crucial to optimizing brain health. Earlier this year, he stated that the conversation about childhood vaccines and autism is “ill-defined,” and that parents should ask their pediatricians about spacing out their children’s vaccinations — an approach the CDC disagrees with, and which 90 percent of doctors surveyed by the journal Pediatrics in 2013 said would put children and communities at greater risk of contracting preventable diseases.

As Perlmutter’s megaphone has grown, so, too, has his brand empire — he has sold everything from “Empowering Coconut Oil” to supplement blends tailored for specific demographics, like the $90 “Scholar’s Advantage Pack” for “young adults seeking to optimize cognitive function,” and the $160 “Senior Empowerment Pack,” a “combination of formulas designed to help keep you cognitively sharp as you age.” One book pointed readers to an $8,500 brain detoxification retreat run by Perlmutter, which included shamanic healing ceremonies. (He even has his own organic foaming hand soap.)

In light of all this, it’s worth asking: Should Dr. Perlmutter’s millions of fans really trust him?

http://nymag.com/scienceofus/2015/06/problem-with-the-grain-brain-doctor.html

I've always found that when someone makes claims of being able to cure a host of unrelated diseases that it's a big red flag for me. Perlmutter raises quite a few red flags if you check this list from Colorado State U:

1) Recommendations that promise a quick fix.
2) Dire warnings of danger from a single product or regimen.
3) Claims that sound too good to be true.
4) Simplistic conclusions drawn from a complex study.
5) Recommendations based on a single study.
6) Dramatic statements that are refuted by reputable scientific organizations.
7) Lists of "good" and "bad" foods.
"Spinning" information from another product to match the producer’s claims.
8 ) Stating that research is "currently underway," indicating that there is no current research.
9) Non-science based testimonials supporting the product, often from celebrities or highly satisfied customers.

http://www.ext.colostate.edu/pubs/foodnut/09350.html

Also remember that AlohaBird is not a doctor & that she is only stating her opinion.

 

[Bidwell]

Epileric, I also read that piece you are referring to when it came out and I decided to continue to shape my thinking and food intake in the terms that Perlmutter sets forth in his book. It has been three or four months now [I think] and I am following along ... among other things I am consuming 2 T coconut oil a day. My current lab work shows some positive differences, especially in terms of cholesterol. IT IS TRUE that during this time many physiological & emotional problems have worsened and I have felt like hell. My poor brain certainly has appeared to be mush. However, a few weeks ago I had a B12 reading and it showed a deficit. Now that I am starting a series of B12 shots it seems likely that I will be myself again soon,and I am heartened especially now that I have checked lab work from the last 5 years and see that the deficit has not been too long lasting. But why wasn't a B12 blood test taken earlier? You would think that evidence based medicine would demand something as simple as that and would be on it lickideesplit. Right?
So I am STILL grateful to Perlmutter. Nobody will ever prove it, but I believe that without the dietary framework he provided me in the last few months, things would have been much, much worse for me. Who is to say? Maybe it was placebo. Maybe I was carried away by AlohaBird's enthusiasms! No, I do not think so.
Something else that turns me away from this very reasonable list from the article is that I only recently have to come disrespect a fairly large number of reputable scientific organizations. These days I often do not believe in their ability to come forth with anything that resembles truth.

 

[epileric]

However, a few weeks ago I had a B12 reading and it showed a deficit. With the regime of B12 shots it seems likely that I will be myself again soon,and I am heartened especially now that I have checked lab work from the last 5 years and see that the deficit has not been long lasting. And why wasn't a B12 blood test taken earlier? You would think that evidence based medicine would demand something as simple as that. Right?

So you’re happy that you’re your B12 deficit didn’t last long but your unhappy that it wasn’t found sooner? For that matter, have you even asked the doctor why things took so long?

So I am STILL grateful to Perlmutter. Nobody will ever prove it, but I believe that without the dietary framework he provided me in the last few months, things would have been much, much worse for me. Who is to say?

I would be very cautious of people who say “This will never be proven but it’s true”. That is one of the first red flags for defining snake oil salesmen. When someone says “nobody will ever prove it but” it is very hard for me not to interpret that as “this probably isn’t true but....”.

Maybe it was placebo.

Remember placebo is only known to cure certain things like pain and anxiety. It is not known to cure medical issues, just their symptoms. Think of Steve Jobs who thought juice would cure his cancer. He got a nice placebo effect that stopped his pain but that also meant that he just waited longer before getting a treatment that worked & by then it was too late.

Something else that turns me away from this very reasonable list from the article is that I only recently have to come disrespect a fairly large number of reputable scientific organizations and often do not believe in their ability to come forth with anything that resembles truth. So this may be a case of the pot calling the kettle black!

I’m sorry you feel the way you do towards science organizations that don’t support your views. When you say “I only recently have to come disrespect a fairly large number of reputable scientific organizations and often do not believe in their ability to come forth with anything that resembles truth.” I think it shows that you’ve already decided what the truth is & that you've decided what is true based on who said it rather than what was said. That makes me think that you are letting your biases determine what you will perceive as right or wrong.
Science itself is based on the precept that to accept something, it must be shown to be true using the scientific method. This is based on the protocol of using studies that are done in such a way as to minimise outside interference that might change the outcome and give an inaccurate or misleading result. Even after that is done the results must be repeatedly duplicated by other unassociated scientists and even then, if someone can show them to be wrong through the same process then what is accepted must change. This may not be perfect but it is the best way to not let our biases lead us to fallacious conclusions.

 

[AlohaBird]

Epileric,



Perhaps you could try reading Pelrmutter's book before condemning it based on a review written by someone who only read the dust jacket. That's not "evidence based", is it?

If you took the time to read the whole book instead of just doing the knee jerk negativity dance, you might find that :

1)Perlmutter is a registered and currently practicing neurologist.
2)^^Also a certified nutritionist.
3)Doesn't endorse "crackpot" quackery such as saying the government is giving our children autism in vaccines deliberately.
4)Backs up everything he says in his books with valid scientific evidence. Lots and lots and lots of it.
5) "Despite Perlmutter’s popularity, most mainstream medical authorities do not endorse the advice he dispenses." So????????
Most "mainstream medical authorities" graduated from college 40 years ago and haven't kept up with the latest research.

This is not about faith. This is about scientifically valid truth. It's just a more modern truth than your venerated "authorities" have embraced yet. It took Galileo a while too.

 

[Bidwell]

Epileric,
I am with you up to the last couple of paragraphs, by which I mean that I understand why you would arrive at your conclusions and I would have to think further about how to state my case so that you could understand me ... because I do have a case. And I WAS shooting from the hip -- that part is clear!

However, I protest the last couple of paragraph.This is not me. I understand and honor the scientific method. If that were not true, I would not be so bitter. But news arrives with increasing frequency about the institutionalized dishonesty of scientific organizations that turn the scientific method into a travesty, so that the validity of studies just does not stand up under scrutiny...and we are not talking about sophisticated scrutiny. Recently I have been impressed to read that studies not confirming "the right answer" that drug companies require, simply are not published. Easy. The information is just deleted. The public, which includes the working medical community, is none the wiser. But there is more, much more. [And I am frustrated because, as I say, my brain is mush at the moment.] Then again, in the United States we have the spectacle of the entanglement of professional organizations that claim to be scientific with the government in ways that compromise the ethics of the organizations themselves, most recently and most revoltingly, the American Psychological Association in relation to the CIA and torture.

 

[AlohaBird]

I find this list Epileric posted to be a good one. The thing is, if you actually read Dr Perlmutter's books you would see that none of these apply and this makes Dr. Perlmutter a very reliable source.

1) Recommendations that promise a quick fix. He never says this.

2) Dire warnings of danger from a single product or regimen. He is talking about several health factors including overuse of antibiotics, natural vs cesarian childbirth, breast feeding, gluten, high sugar and carb consumption, lack of sunshine, lack of exercise, gut micro biome imbalances....Shall I go on?

3) Claims that sound too good to be true. Does fixing your digestion by eating a healthy diet sound too good to be true to you? Does a healthy digestive system having effects on the body as a whole sound fanciful?

4) Simplistic conclusions drawn from a complex study. His conclusions and recommendations are anything but simplistic. Of course you would have to read more than the dust jacket to know this.

5) Recommendations based on a single study. Read the bibliography.

6) Dramatic statements that are refuted by reputable scientific organizations. Perhaps, as you pointed out, not yet *endorsed* by "the authorities" but I don't see any refutation either.

7) Lists of "good" and "bad" foods. Let's see.... Processed foods high in sugar and fake ingredients are bad for you and while lots of fresh produce and clean sources of protein are good. Is that really so unreasonable?

"Spinning" information from another product to match the producer’s claims. What products?

8 ) Stating that research is "currently underway," indicating that there is no current research. Being honest about the current state of the scientific inquiry is a problem? I admire that Dr. Perlmutter always states the exact level of the source he is quoting, e.g. is this a study of rodents or people and what is the N=#. He is a doctor and a scientist, not "just some blogger".

9) Non-science based testimonials supporting the product, often from celebrities or highly satisfied customers. Dr. Perlmutter does have testimonials from people who have tried his approach successfully. This may not be "scientific" but that doesn't make it not real. It is clearly labeled as "testimonials" with all the YMMV caveats attached. I don't see anything wrong with this additional information in the same way that I don't see anything wrong with someone here on CWE telling their personal experiences with a particular medication. Doesn't mean that generalizes to everyone but it is interesting information nonetheless.

 

[masterjen]

AlohaBird: I think what may help your perspective of things is if you quoted doctors and scientists other than Dr. Perlmutter, and the scientific approach and studies they used to arrive at their conclusions. If what Perlmutter says is as correct in his approach as you feel he is, then others have to have been able to prove what he is also claiming.

 

[Bidwell]

Actually, when I read masterjen's post again I realized that if AlohaBird quoted doctors and scientists other than Perlmutter, WE might feel that we had a better perspective on things. I think AlohaBird is happy with her perspective as is!

 

[resaebiunne]

So????????
Most "mainstream medical authorities" graduated from college 40 years ago and haven't kept up with the latest research.

Honestly!?

This is not about faith. This is about scientifically valid truth. It's just a more modern truth than your venerated "authorities" have embraced yet. It took Galileo a while too.

A very arrogant viewpoint.

Sorry Alohabird, but you and I have more and more to disagree on as I read your posts. I don't want to seem like I'm trolling here, but it probably does look that way since I'm just the new guy.

 

[AlohaBird]

AlohaBird: I think what may help your perspective of things is if you quoted doctors and scientists other than Dr. Perlmutter, and the scientific approach and studies they used to arrive at their conclusions. If what Perlmutter says is as correct in his approach as you feel he is, then others have to have been able to prove what he is also claiming.

Do you really think Dr. Perlmutter is the only one saying that healthy eating leads to a healthy gut which influences the health of the whole body including the health of the brain? Is that really such a novel concept?

The reason I quote him and recommend his books is because they are very accessible being on the best seller list and all. He also writes very well and he does a very good job of gathering together research from many more doctors and medical research institutions than just himself.

The problem about many websites is that you get a blogger quoting another blogger as a source who is then quoted by another blogger but there is no there there.

When a world renown scientist and neurologist and nutritionist such as Dr. Perlmutter quotes medical literature, he knows the difference between junk science and good science.

I recommend Dr Perlmutter because his chapter endnotes and his bibliography and his website, drperlmutter.com, are a gateway to so much more. People can do so much research from there if they care to.

Or they can cross their arms and refuse to learn anything new. People make their own choices.

 

[Bidwell]

More about the NYMagazine June article panning Perlmutter

I just googled the author of the article in the New York Magazine about Perlmutter on June 24. His name is Alan Levinovitz and he is an assistant professor of Chinese philosophy at James Madison University. He has just published a book named The Gluten Lie, which is called an "incendiary work" on one of the google listings.