Migraine and Overgrowth of Bad Bacteria Part 2

Migraines respond well when we maximize our health, and this includes the health of our digestive system.  Bacterial overgrowth may not directly affect your Migraine attacks, but it may have an indirect influence that shouldn't be ignored.  It can be so easy to fix - if you know you have the problem. 

In part one, we created an analogy of cows and deer, grass and weeds to describe how good and bad bacteria work in the digestive system.  Now we'll talk about why this is important to know...

Feeding the good, starving the bad

To have healthy cows, we must be sure that the grass in our pasture is healthy.  If all we have is weeds, then the only thing we have that can survive is deer, and we don't want deer.

In this analogy, we need to feed our good bacteria.  Good bacteria especially love to be fed fiber.  Yep, the same fiber found in bran muffins, apples, celery, oatmeal and lots of different good-for-you foods.  Healthy bacteria need 30 grams of fiber each day.  In those patients who have diets low in fiber, it is not unusual to see a multitude of bacterial overgrowth related problems including diarrhea, constipation, yeast infections and malabsorption to name but a few.

By keeping the pasture healthy, the cows will proliferate and our guts will be full of good bacteria, with few bad bacteria to complicate things. Bad bacteria cannot eat fiber.  They exist on sugar.  Sugar comes from carbohydrates.  Those whose diets tend to be low in fiber also tend to be high in carbohydrates, so is it any wonder that they are sick?!

The ideal diet for human beings is one that is low in carbs and high in fiber.  We need animal products to survive (vegans supplement the missing nutrients) but we subsist primarily on fruits and vegetables - this is how our bodies were designed.  The average American diet today is outrageously high in carbs and so low in fiber that the majority of people live in a constant state of digestive upset and low or errant immune function. 

You medicine could be making you sick

The number two reason for bacterial overgrowth is a direct result of medical treatment.  The medicines we are taking to help us can in reality make us very ill.

It's unfortunate that most doctors have begun to rely heavily on medicines to do the work that can be done without them.  The fact remains however, that Migraineurs depend on many medicines to get them through life with Migraine disease.  This means that it is really important that we learn how to optimize our good gut bacteria so we can stay as healthy as possible, hopefully minimizing the chance that episodic Migraine will transform into chronic Migraine.

The most common medicines to alter gut flora balance are antibiotics.  Since stress can also alter gut flora balance, it's possible that any treatment or disease can contribute to bacterial overgrowth, but antibiotics kill the very bacteria we need to survive.

Antibiotics are designed to kill bacteria and they are very good at their jobs.  However, they are very non-specific.  They kill everything.  All bacteria.  This means that they kill the bad bacteria in our digestive system and any infection we might have, but they also kill off all the necessary good bacteria as well.  We re-populate our gut flora after the antibiotics have been completed (you really do NOT want to ask me how) but because our diets are so poor in fiber and high in carbs, we tend to become riddled with bad bacteria that can be so harmful to us.

How harmful?  

E. Coli is very well known by most everyone.  Have you ever wondered about it?  How and why it gets into our food chain?

A long time ago, people realized that feeding cows a lot of sugar made their meat very sweet.  So, farmers "finish" feeder cattle off with enormous amounts of grain and sugar over a short period of time.  This results in a very sweet tasty steak, but because they have essentially eliminated all good bacteria from their digestive systems, they are now riddled with bad bacteria including E. Coli.  Their livers can get fatty and swollen and sick.  If a steer was forced to remain on this diet for long, it would actually die.  When the animal is butchered, the proliferation of bad bacteria is more likely to be accidentally spread to the meat, causing illness in those who eat it.  This is one of the causes of the immense resurgence in grain fed beef - the meat itself is healthier because the cow it came from was healthy and fed a healthy species appropriate diet.

E. Coli is in your digestive system right now.  It is one of the main *bad* bacterias we have in us all the time.  The trick is in learning to keep it under control so that it doesn't make us sick.  We do this by starving it, and by feeding our good bacteria.

So what do we do if we have had antibiotic therapy?

Thankfully the difference between good and bad bacteria was discovered a long time ago.  Good species necessary for our survival were cultivated and can be purchased as a supplement to re-populate the digestive system.  We call these healthy bacteria Probiotics.

Physicians do realize the benefit of probiotics, they just don't typically make it a habit of prescribing them, which is unfortunate. Patients who are forced to undergo prolonged antibiotic therapy are however, required to take massive doses of probiotics to keep the gut populated with helpful bacteria.  Remember, without it we would die of malnutrition.

There is much to discuss when we start down the path that connects the gut and the brain.  More posts will follow later on this vital connection.  The facts are fascinating and might help you in your journey toward better health :)



Live your best life,
Ellen Schnakenberg
~patient educator and advocate


   

Migraine and Overgrowth of Bad Bacteria Part 1

Migraine causes patients to take a lot of drugs.  We try many things to control our Migraine attacks and to stop them when they occur.  We change how we eat, sometimes not for the better.  We are stressed because we aren't functioning at capacity.  Our Migraines themselves cause us to crave things that cause digestive trouble. We overdo when Migraines aren't hitting us.  Like a vicious circle, singly and in combination these things can create problems in our digestive system that in turn can influence our Migraine attacks. 

So, let's explore how this happens so we can fix the problem and stop the vicious circle that may be contributing to our attacks.

It's all about cows and deer, grass and weeds.

Okay.  Not really.  But cows and deer, grass and weeds make a pretty good analogy of our digestive system and how bacteria overgrowth happens.  It also helps patients understand how to fix the problem.

Our gut (digestive system) contains more bacteria cells than the number of cells our entire body itself is made of!  Without good bacteria, we would eventually starve and die of malnutrition.  Good bacteria give us vitamins, helps our immune systems and are necessary to our survival as human beings. Bad bacteria makes us sick and stops our digestive systems from working correctly. 

We're going to explain this by dividing the bacteria up into groups:  Good bacteria and bad bacteria.

Good bacteria = cows.
Bad bacteria = deer.

Cows and deer both have a place in the world.  They both serve a purpose.  They are similar because their diets are similar.  They live in a similar environment.  However, in this analogy we like cows much better than deer because cows give us milk, meat, leather and all kinds of wonderful things we use every day.  We need cows.  Deer however are a bit of a pain.  They wreck cars, damage fences, eat crops and gardens.  In this story, the cow are the good guys, and the deer are the bad guys. 

So, our gut contains billions of cows and deer.  Check.

When we eat, our gut also contains the food we have consumed.  This is the food for cows and deer. So...

Gut = pasture

Cows and deer are both hungry.  They must eat to survive.  There is normally a balance of good and bad bacteria in the gut that keeps us healthy.  They share the same pasture equally and everybody is happy and healthy.

Pastures do not just grow however.  They must be maintained.  Farmers seed them, fertilize them, weed them and care for them.  If the farmer doesn't maintain his pasture properly, weeds begin to grow.  The grass is not healthy and it is eventually choked out by the weeds. In our analogy:

Cows eat grass.
Deer eat weeds.

If we don't eat the proper foods and maintain our gut/digestive systems properly, our pastures begin to suffer.  They become riddled with weeds, the grass won't grow properly.

Cows begin to die.
Deer begin to reproduce rapidly, taking over the farm.

When the deer outnumber the cows (the good bacteria are fewer than the bad bacteria) we have something called Bacteria Overgrowth.  Bacteria overgrowth hurts our immune system, contributes to leaky gut syndrome, gluten intolerance, diarrhea and other digestive issues which may contribute to Migraine.  Candidiasis, yeast overgrowth, diarrhea or constipation and frequent infections can signal that there is insufficient good bacteria in the gut.

Many things can contribute to bad pasture management and too many weeds taking over the grass.  The two most common contributors to bacterial overgrowth are:

1. Bad diet
2. Antibiotics and medicines

Tomorrow we'll talk about how bad diet and antibiotics and medicines can cause this difficult to diagnose problem, and how easily it can be solved. 

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

The Year I was Dead - Migraine and Voting.

Voting when you suffer a chronic illness like lupus, Sjogren's Syndrome or Migraine is difficult at best.  Still, I always do my best to get to the polls, even if that means getting someone else to drive me there.  Today I received notice that my voting record had been audited.  I didn't even know just anybody could do that!  When I saw that they had recorded that I did not vote in 2004 I was a little miffed.  

Would it surprise you to learn that in 2004 I was told I couldn't vote because I was dead?

It sure surprised me at the time! 

I had finally made it to my polling place.  It was dark and there was a line.  When I got to the table where they asked my name, they looked and looked.  My hubs and son were there, but not me.  

Where was I?  The ladies helping with voting knew me, and they were as shocked as I was.

I insisted that I wanted to vote.  So phone calls were made, and eventually the mistake was found.

I was listed as having passed away nearly a year before!

Needless to say, the reports of my death were greatly exaggerated, so they provided me with a provisional ballot and I was "allowed" to cast my vote. 

In other years I have had difficulty voting.  Fluorescent lights in my polling place triggered a Migraine aura that made it nearly impossible.  I have had to wait out a Migraine so I could drive myself.  I have carried a barf-bag with me in the car because I was afraid I wouldn't make it the 6 miles to vote.  I have been stuck at home without a ride, and missed voting.

Voting isn't just a privilege, it is a responsibility.  As far as I'm concerned, if I don't vote, I have no right to complain about the results.  

This year I'll be voting.  Will you?


Live your best life,
Ellen Schnakenberg
~patient educator and advocate

Happy Migra-ween!

When I stepped into JibJab to begin creating a few Halloween e-cards and videos for friends and family, I saw this one and my tongue-in-cheek humor just couldn't resist.  It might not be perfect, but it comes about as close as anything I've seen lately to illustrate the fright, pain and helplessness of an attack.  I'll include the link to the video, so if you want to share it with your Migrainey friends, you can!

http://ht.ly/eRubd

Happy Hallow...errrrr....Migra-ween!

Live your best life,
Ellen Schnakenberg
~patient educator and advocate

On Disappointment and FDA Comments from Migraineurs

The FDA hearings were this week, and fellow advocate Teri was there to represent all 37 million of us with Migraine disease, as well as those with other headache disorders.  I kept the home fires burning and spent the time networking, asking for patients to be proactive and comment to the FDA in an effort to get them to recognize Migraine and headache disorders.  

Unfortunately, not many patients seemed to see the importance of their voices, and were reluctant to comment to the FDA, despite the agency's solicitation for just such patient action.  

I became frustrated and disappointed.  I voiced that frustration in a couple online platforms.  Unfortunately, some patients did not understand my purpose in airing these frustrations, so I decided to talk a little about it here...

Patients wrote to me that their lives were busy and they didn't have time to comment. Their reasoning was that they have to triage their whole lives and that commenting wasn't as important as playing catch-up.  They felt that by saying I was disappointed, I was making patients feel even worse because we spend the majority of our lives disappointing everyone around us and adding to that wasn't a very positive thing.  They felt I was scolding them by stating my disappointment.

Here is my response:   

I do understand triage, very well.  As a first responder and a CERT instructor, I have even taught how to do it appropriately. 

Here is triage in a nutshell:  The most important, life threatening things come first, so long as there is something we can do about them (no lost causes).  Those who can do for themselves are left for later, and those things hopeless or near hopeless... last. 
 
I do understand our need to triage, as I find myself in that situation every day, as I am sure most patients do as well.  It really is a way of life for us, isn't it?  My disappointment was truly not meant to sound scolding in any way.  I am nobody's mom here.  We all deal with disappointment and because we are sick we let people down.  It was disappointment in the placement of this VITAL action in the life-triage of 99% of patients who were making choices that I was voicing.  It was an effort to get patients to stop and look at what they are doing.  HOW they triage.  We had all tried the much preferred "positive" approach, all over the web, and it is failing.  Even in a special positive and proactive group, it was failing.  Let me explain why...

My disappointment was genuine and tearful, and had to do with the fact that in a group designed specifically for positivity and acting proactively, at the time there was less than a handful who had even replied to the request for action, let alone actually had done anything.  Teri went to DC using her own funds and time - while Migraining I might add.  We're a team and I covered what I could as well as spent 12 hr days talking to people trying to get them to do what is so vitally important for all of us - getting the FDA to pay attention to these disorders so we can get some medicine or treatments that will be helpful... finally.  Even just removing the runaround for those treatments that are already waiting for approval would be amazing!  There is a short time limit on this and its importance truly cannot be overstated.  Not possible.  When I said vital, this is exactly what I meant.  It is life-saving. 

I honestly think that the majority of patients highly underestimate their power where this is concerned. That was my point.  This could be life saving for some and life changing for so many - myself included with those reading the post.  To me, this is of the utmost importance.  Little is more important than helping patients who are desperate.  Period.  There is little that takes precedence in my life for this one short week than getting everyone I know to place a comment.  We had premature sick triplets born last week, my MIL married 4 hrs away, a huge family disagreement, a trip to Des Moines for national boards, a dog diagnosed as dying, and I'm getting ready to leave for Scottsdale.  I do understand the meaning and importance of playing catch-up. 

This is what we as advocates have to consider... what do I tell the next person I talk to who has a handful of pills in their hand, or a razor blade or gun?  That there is no help for them because nobody would write a 2000 or less character note to the FDA last week?

That is the kind of pressure we are under as advocates, each and every day.  Lives literally hang in the balance.  Patients see their playing catch-up as important, and I'm not saying it isn't.  I'm saying these lives are more important, IMHO.

Can you imagine Teri's pressure, knowing that she was the only one there to speak for 37 million suffering people?  She was scared to death, afraid that if this didn't go thru, it would be her fault! 

When the next Migraineur commits suicide or dies, this is what we will be thinking.  That we didn't do enough.  That it could have been prevented.  That we could have done better. 

You can't imagine the frustration we feel as advocates.  We literally do everything in our power to help the masses despite our own health issues etc, yet the masses often do nothing but vent and complain and won't take 5 minutes out of their day to do something that could actually BE impactful.  I'm not saying that is everyone because that simply isn't true.  Raw statics say the majority turn their heads however.  Isn't that sad?  

It makes me weep.

Between you, me and the fencepost, we are on the computer talking with patients all day long, 7 days a week, sometimes into the early morning hours when they need help.  We do it because we love patients and can't stand to see them suffer.  We know that they will get the info from us they want or need, then disappear most of the time.  This is actually good, because it means they were usually helped.  We Migraine and lay in bed in agony, typing one word at a time trying to help others between running to the bathroom to vomit.  We let our houses become a mess so patients aren't neglected.  We miss family time and give up any semblence of a life... for patients.  We don't get paid for that, or even thanked - that's not the point.  We are just doing whatever we have to do to help people because we've been there.  We do it because it NEEDS to be done.  If we don't step forward, who will?  That is the triage of necessity. 

Lives trump everything else. 

We feel so completely defeated when we ask those we have helped, for 5 minutes of their time for something so truly important, and they refuse.  Really, that's what not doing it is - a choice - a refusal.  There may be a good reason why a patient can't get to something really long for a day or two, but a single sentence is sufficient here if a patient can do no more more - it doesn't have to be a long letter.  It's true, we feel very let down by those who don't have time for a sentence. 

Most patients are under the delusion that someone else will write in, that their voice isn't important.  The opposite is true.  When we beg tens of thousands of people for action and get 50 - 100 comments, that is truly sad.  It has happened before!  We've been here before. 

The fact of the matter is, the government and the FDA are literally laughing at us right now.  Laughing.  Most people don't realize that. If the patients who are hurting don't care enough to write, why should those in charge pay any attention to us at all?  So, they don't.  The squeaky wheel gets the grease.  And we go to DC, walk until our feet blister, and beg and plead each year for action, and each year we are turned down.  Not because our arguments aren't good enough - because they all agree that what we say needs to be heard - but because the patients won't do anything themselves.   It's all about numbers.  And we have none. 

I need to know that there is a future for my Migraines to be treated.  This keeps me going. Without that, I would be dead.  Plain and simple.  When no one writes, it feels personal.  It means no one cares enough to make it a priority in their triage.  That cleaning their toilet, unpacking a suitcase or sweeping their floor is more important.  When no one writes, I know that there is no hope.  WE NEED that hope.  

So, my post was not intended to be negative.  Actually, the opposite was its intent. 

It was intended to get people out of bed and to their computer for something that collectively could change our world.  It was intended to help them realize the importance of being proactive and taking action.  I hope that the only thing members got from my post was not just thinking they were being scolded.  I hope they got that this is important.  Vital.  Worth your 5 minutes.  I hope that it made them feel powerful.  Needed.  Important.  Because that is where the truth lies.  Leave sweeping your floor until tomorrow so the comment can go in today.  

Without you, and others like you, I might as well give up.  We can't let that happen.  We have to keep the ball rolling.  All of us.  Collectively.  The dirty floor will still be there tomorrow. 

So I realize now this could sound like a scolding again.  Please don't take it that way.  This is my way to help patients understand the scope of the issue, the best way I know how.  To understand where I was coming from in writing what I wrote.  To understand what drove the post - making members feel that they are important enough, powerful enough to matter where commenting is concerned. 

I'm doing my best.  I really, truly am. 

I encourage patients and friends to let me know if you think I overstep the line at any time.  That is important - you are important!  I am far from a perfect person.  I will make mistakes just like everyone else.  In this case, the post wasn't necessarily intended to be a feel good post as one might think of as positive, but a proactive post, and positive in a different light.  

As always, I welcome any feedback patients might have.  :)  It's good to get a conversation like this going sometimes...     

Cleaning, De-cluttering And Organizing With Chronic Migraine and Illness

Make absolutely no mistake.  My name is Ellen Schnakenberg, NOT Betty Crocker.

When it comes to keeping my house in order while suffering near daily Migraines as well as chronic pain and exhaustion from autoimmune attacks on my body, I have a long way to go.  Learning how to do it has been a process however.  One that I'd like to take a few moments and share.

Childhood

When my kids were little, life was all about them.  Whether or not the house was cleaned each day seemed fairly unimportant when Migraine was already stealing so much of the good stuff of their childhoods.  The important stuff got done, when it needed to be, but not usually much before that.  In our restored turn of the century home I had the option of a living room and foyer that was kept spotless so visitors could enter and I wouldn't be completely horrified.  Those two rooms with my formal Dining Room made life doable, because I could relax with the other personal rooms.  Daily damp mopping took moments, yet kept the wood floors spotless and ready for company at a moment's notice.  Keeping the clutter to a bare minimum made for easy dusting.  Remembering that we were in the process of restoring the home and therefore living in perpetual construction was also important.  It's hard to have a "perfect" house when you're dodging ladders and paint cans all day.

At one point I had the spare cash to hire a team to come in and help me clean once a week.  When we moved, they helped me pack.  I had no one else to help me - sad, but true.  If it weren't for these fabulous ladies, I think my house and my family would have completely fallen apart.  If there is a way to find even enough cash for 2 hrs by a pro once a week or even once a month, I think it's worth every penny and more.

Adolescence

When the kids were adolescents, life was still about them.  Their activities still took top billing, because making those experiences family oriented were key to keeping our family together in the face of chronic illness.  You've gotta have priorities, and sometimes something has to give. 

However, the kids were also bigger and much messier.  Hubs and I disagreed frequently about how much responsibility they should have, and unfortunately, I often didn't have the strength to push my point too far.  Things suffered much more without help and this caused a lot of stress for me personally.  It felt like I was failing, and all around me were the reminders that I wasn't getting it all done.  In the end, I knew it was a temporary situation.  I closed my eyes and got the important stuff done and ignored the rest. 

At one point I tried the Flylady method of cleaning.  I learned a lot, much of which I actually apply in my work as a patient advocate.  I highly recommend it for those who can't seem to find the time to do the basics and feel overwhelmed that things have gotten away from them to the point they don't know where to begin fixing the problem.  I learned that 15 minutes a day is all it takes to keep things basically clean, and that one month spent on a single room, multiplied by 12 a year is enough to keep the rest of the house pretty close to spit spot.  In my exhaustion and pain, having someone to remind me of my tasks for the day was helpful, although also sad.  It wasn't that I didn't take pride in my home, it's that I took more pride in being a mom.  Like a knick-knack, I had to put my expectations on a shelf for later.  Much of getting through this period of time was about closing my eyes and reminding myself that this is a phase... a temporary situation that will eventually, someday be better. 

Adulthood

I wish I could say it got easier when my kids moved out.  The problem is, their bodies moved, but a lot of their stuff is still here.  For instance, I currently have a huge living room, but 1/3rd of it is taken up by an enormous massage table being stored here until the day it has another more permanent home in my daughter's clinic.  The same goes for a piano given to her, and a bed and dresser, and boxes and boxes of stuff. 

Not helping the situation is the fact that we have been in the middle of an enormous home renovation that began over 6 years ago.  We're literally living out of boxes, and until the contractor comes back to finish the job, it's not likely to change a whole lot for a while.

Honestly, painting a room or hanging curtains or artwork is a great way to get me enthusiastic about keeping it in order.  I still have virtually no help, but if I can walk into a room and it makes me smile, for whatever reason, I'm much more likely to take care of it when I'm hurting.  My desire for a beautiful space has GOT to overcome the pain and exhaustion I feel.

My current mantra is "When in doubt, throw it out."  Okay, that's been my mantra since I saw a hoarder's home years ago.  Still, it applies.  De-cluttering is key to keeping things in order.  The trick is letting go of the stuff.  One box for *things I love* to be stored - one box per room ideally.  One box for *give away*.  One box for *throw away*.  If it hasn't been used in 2 years, I don't really need it.  The exceptions are for those things packed away due to our renovation that can't possibly be used.  When all else fails, clear a room out by taking everything out of it, putting it onto the lawn and then dividing it.  Only put back into the room those things you're willing to clean.  The rest goes into one of the three boxes.

Sound too hard?  I plan for those days when I clean big like that.  It takes about a week ahead of time to be sure I'm avoiding ALL possible triggers, taking all meds, and then the day I feel good, I get out of bed, take all the pain meds I need to get me thru the day, then go for it the best that I can.  When done, I go to bed and sleep, planning on being super sore for at least a week following.  While I'm sore, I still get up and move about, taking time to enjoy my *new* room, reminding myself that there is a reason I put myself through such an ordeal while reminding myself that "less is more" and it doesn't ever have to get that way again!

An option many patients have that I don't here in the middle of God's nowhere, is a group of friends to help them.  What a joy it would be to get together once a week and clean one house, then the next week go to another.  Many hands make light work as the old saying goes.


Live your best life,
Ellen Schnakenberg
~patient educator and advocate

My Beginning in the End - "Stronger"

Dear Migraine, Lupus, Sjogren's and Dystonia: 

There are times I let you get to me.  Days when I feel that I can't even breathe.  The pain of my cries are only surpassed by the agony of choking back the sobs.  You didn't think that I'd come back swinging.  You try to break me, but you see...

I remember:

"You think you got the best of me. Think you've had the last laugh. Betcha think that everything that's good is gone. Think ya left me broken down. Baby you don't know me cuz you're DEAD WRONG.  

You know I dream in color, and do the things I want. What doesn't kill you makes you stronger. Stand a little taller, just me myself and I. Doesn't mean I'm lonely when I'm alone! What doesn't kill you makes a fighter. Footsteps even lighter. Doesn't mean I'm over cuz you're" here. 

"Thanks to you I got a new thing started.  Thanks to you I'm not the broken-hearted. Thanks to you I'm finally thinking about me. 

You know in the end the day you" came "was just my beginning in the end... "

Music video and lyrics by Kelly Clarkson performing Stronger (What Doesn't Kill You). (C) 2011 RCA Records, a division of Sony Music Entertainment