Some Thoughts on Medical Botox for Migraines and the VA

Last April, I received Botox injections for the first time to treat my migraines.  Last week I received my fourth series of shots.  Which means that when this cycle ends in April, I will have been receiving Botox injections for one year.

I had some trepidations before my first Botox injections.  But I was also hopeful that they would prevent my migraines, or at least give me some relief.  As it turns out, Botox does give me much better quality of life – for part of the quarter.

As I have mentioned before, the effects of Botox do not last a full 12 weeks for some patients.  But it could be worse:

Approximately 30% of patients with chronic migraine headaches do not respond to Botox.  For them, Botox does not provide significant relief.

Although I am VERY GLAD that I am NOT in the category of patients who do not respond to Botox treatment – i.e., for some people Botox does not seem to affect their migraines, and they get no relief – I am frustrated that the effects of Botox only last for 8-9 weeks of the 12 week cycle for me.

For me, the effects wear off 2-3 weeks before the end of the quarterly cycle, and then it takes another week to stop feeling bad after I’ve gotten the next series of shots.  So I only get relief for 8-9 weeks of the 12 week cycle.

Considering that Botox works better than any of the many, many other medications I’ve tried to relieve migraines, I am very glad that it does work and that I have decent quality of life for 2 months out of every three.

But it is so frustrating to know that I could feel better all the time if the VA would just allow a shorter interval between shots.

It takes about a week for the Botox to have full effect.  Not only do I stop feeling crappy, but my forehead stops responding when I try to move my eyebrows.  My forehead muscles are locked down, and nothing moves.

Toward the end of the cycle, I start testing my forehead muscles.  Once my eyebrows start to move again, I know the Botox is wearing off and I am going to start feeling crappy again.  The more my forehead muscles move, the less benefits I am getting from the Botox, and the worse I feel.

And there’s nothing I can do about it.

It is such a helpless feeling to know that the medication that allows you to function is wearing off, and you can’t have any more for weeks.

Can you imagine telling a patient with any other disease or condition that they must wait and suffer without medication for nearly one month each quarter?  It’s inhumane.

So today I sit and wait for the Botox to work its magic.

It’s hard to describe migraines to people who don’t have them.  It’s not just “a really bad headache.”  While the headaches can be excruciatingly painful, they are not the only symptom.  Migraines are a neurological event, which means they can affect the central nervous system, the cardiovascular system, and the vestibular system.

For me, on a bad migraine day I can’t think, because of the brain fog.  I will not be able to remember to do simple things like take my medications/supplements.  Food doesn’t taste good, and I will not be interested in eating.  Sometimes I will have nausea.  I will be incredibly sensitive to light and sound, and they will feel painful to me.  Flickering light is especially painful, and might even affect my sense of balance.  I may be dizzy and light-headed.  Smells are also very strong and unpleasant.  Even on a “good” day, if someone touches me and the odor of their perfume or cologne gets on my clothes, I will have to go home and change my clothes, or the odor may give me a headache.  If it gets on my skin, I will have to wash it off.  My senses are heightened, and sounds, smells, or light that you don’t notice can be unpleasant or painful to me.  Also, my blood pressure is higher on a migraine day.

Some people, like me, also experience migraine “with aura,” meaning that because you have migraines, you have other weird stuff happening too.  Sometimes the other weird stuff happens before a migraine headache, like a warning, and sometimes the weird stuff happens, but you don’t get a headache.  Some examples include scintillating scotomas (a visual disruption), paresthesia (a tingling or numb sensation in a part of your body), or aphasia (an inability to speak or remember words).  It is not uncommon for these symptoms to be confused with a stroke.  You may have seen this reporter having an episode on-air a few years ago:

So what this means is that, when my Botox wears off and I have to wait weeks for another dose, and a week past the injections for the Botox to take effect, I am not just experiencing a headache for which I can take pain relievers, tough it out, and go on with my day.

No, what I have is cognitive impairment (brain fog) so severe that I cannot accomplish basic functions like taking my medications.  I may forget if the dog is inside or outside.  I may forget I have a dog.  I won’t have an appetite, and may vomit, but if I do try to prepare food, I may forget to turn off the stove afterward, or I may forget the food is on the stove cooking.  If I try to speak, I may not be able to remember words or form sentences.  I may have intermittent balance problems, or I may have vertigo so severe that I cannot lie down (everything spins harder), and can only go down stairs on my butt, like a toddler.  NO WAY could I operate a car like this.  Every light in the house will be off.  Every curtain or blind will be closed.  And until it passes, I will be unable to do anything.

So, even though the Botox treatments give me 8-9 weeks of much-lessened symptoms (there are still bad or unproductive days), feeling the Botox wear off and knowing that I will descend back into that pit for 3-4 weeks is a horrible, frustrating, helpless, and unnecessary feeling that I wouldn’t wish on anyone.

To give someone relief and then take it away due to bureaucratic or monetary restrictions is cruel and inhumane.

The nurse practitioner who gives me the injections every quarter tells me he understands that the Botox doesn’t last as long for some patients, but he cannot shorten the interval unless VA policy changes.

Here are the VA guidelines I can find:

http://www.va.gov/purchasedcare/docs/pubfiles/policymanuals/champva/chapter2/1c2s22-5.htm

I have not been able to find the VA publication that includes the specific approved interval for Botox shots and the underlying justification.

Meanwhile, having just experienced the end of my Botox cycle again, I decided to highlight on my calendar the weeks that I will be unable to function at the end of this Botox cycle.  That way, I will know not to plan anything for those 3-4 weeks.

It’s a really weird feeling to plan for being incapacitated.  And it’s almost impossible to explain to others that I will not be capable of doing anything during those weeks – that I know about it in advance, and there’s nothing I can do about it.

You’re not supposed to be able to schedule being sick.  It’s something that normally happens unexpectedly.  And, in our culture, when that happens you heavily medicate yourself and try to go on with your normal schedule anyway.

Since most people don’t understand chronic illness, there’s no way they’re going to understand episodic chronic illness.

But since the VA (and many other healthcare providers) will only approve a twelve-week interval for migraine treatment Botox injections, I will have to schedule around the weeks I know I will be incapacitated.

This cycle, that includes Easter.  I will be doing nothing for Easter this year – just hiding in a dark, quiet house and praying for my next shots like a heroin addict.

2017 New Year’s Resolutions

In the spirit of mindfulness (or contrarianism), I don’t do New Year’s Resolutions “just because.”  Because it’s tradition; because it’s expected; because everyone else is doing it.

Many years I don’t make any New Year’s Resolutions.

 One year my resolution was the direct opposite of what most people do – a resolution to start a particular vice.

Although I was inclined not to make any resolutions for 2017, after reflection I have decided I have two:

  1. To get back to the practice of daily yoga and meditation; and
  2. To eliminate BS from my life.

I started 2016 with daily yoga and meditation, and definitely benefitted from it, but the wrist surgery ended that habit.  However, wrist rehabilitation has progressed to a point that I can resume (restorative) yoga, and the elbow seems like it will heal quickly, so I’m going to commit to a daily practice of  healing yoga – but not putting any more weight on that arm than my occupational therapist allows.

Daily yoga and meditation relaxes me, improves my flexibility, and makes me more mindful.  The breathing exercises give me a tool that enables me to release stress throughout the day as I encounter stressful situations.  And I hope that as I regain function in my left arm, I will eventually be able to use yoga to build strength as well.

Regarding the second resolution, well, that’s the result of several years’ worth of experience and reflection.

I have been reading minimalism blogs for about the last five years.  Simplicity blogs.  Tiny house blogs.  Minimalist travelers’ blogs.  I aspire to live a life that has less drag – less “stuff” weighing me down.  Less to clean.  Less to maintain. Less to haul around.  Less to insure.  Less to organize.

After retirement, Spousal Unit & I moved to a home that was 40% of the size of our last home in the military.  We sold stuff, and donated stuff, and packed and moved stuff, and cursed the burden of our stuff.  Despite that, we still have a lot of stuff.

I have read practically every technique or suggestion for how to get rid of stuff.  Except Marie Kondo’s book, The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing.  This book was sweeping the minimalism/simplicity blogs a while back.  I read all about other bloggers’ experiences of applying her book to their lives.  The basic premise, as I understand it, is to collect all of one type of your belongings (clothes, books, etc.), see how many you have, and then pick up each item individually and ask yourself whether that item “sparks joy”.  If not, you should eliminate it.

No offense to Ms. Kondo, but her approach just didn’t resonate with me.  I was looking for an approach that just made intuitive sense to me, an approach that was simple but got at the psychology behind my behaviors.  For many people, Marie Kondo’s techniques – “the Konmari method” – does that.  But it didn’t do it for me.

And then one day I read an article about getting rid of B.S.  Shazam!  That was my lightning bolt.

If ever there were a simplification technique that would resonate with veterans, this was it.  Just ask yourself:

“Is this B.S.?”

If the answer is “Yes,” eliminate it.

I don’t care if it sparks joy, but I am all about eliminating B.S.

In fact, the longer I thought about it, the more I appreciated the simplicity and directness of this approach.

Engineers appreciate the elegance of a solution.  An elegant solution is simple but sufficient.  It solves the problem efficiently.  The often-cited maxim of elegant design, from aircraft designer and author Antoine de Saint-Exupery, states: “A designer knows he has achieved perfection not when there is nothing left to add, but when there is nothing left to take away.”

A truly elegant solution also has broad utility.  Eliminating B.S. can apply to getting rid of possessions.  But it applies even more so to emotional baggage, perceived social obligations, and peripheral tasks that eat away at your time (a.k.a. “queep“).

The Pareto Principle, also known as the 80/20 Rule, observes that “the majority of results come from a minority of inputs,” or put another way,  80% of the results/output/profits comes from 20% of the work/employees/customers/etc.  Thus, management experts enjoin us to focus our efforts on the inputs that get results, and spend less resources on the inputs that have diminishing marginal benefit.

In other words, eliminate the B.S.

So my second New Year’s Resolution for 2017 is to eliminate B.S. from my life.  I anticipate that as I do so, I will write about it here, in a series of posts.  I hope you will join me.

Comms Check

Hey, this is just a quick post to say:

I’m still here.

This is the last weekend before my next round of Botox shots, and I feel like absolute rubbish.  There is a new post on the way, but it’s not gonna happen until the Botox takes effect and I get my brain back.  Sorry.

[Of course, I am assuming that anyone is reading this blog…  Since I don’t get much feedback, it’s hard to know whether anyone is reading it.]

In other news, the elbow surgery appears to have gone well, and the surgeon didn’t lie when he said this recovery would be much easier than the recovery from wrist surgery was.  It has been 4 weeks since my elbow surgery, and I have been pleasantly surprised at how non-eventful this surgery has been.

My arm was only immobilized for 2 days after elbow surgery, as opposed to 6 weeks after wrist surgery.  I was permitted to drive as soon as I had no narcotics in my system, whereas with the wrist surgery I couldn’t drive for 8 weeks.  Taking a shower was no big deal.  And I didn’t even have to shower with a limb in a garbage bag this time.

I am very grateful that this surgery has been so much easier to recover from.  It also seems to have relieved the elbow pain that I have had for the past 3 years.  There may still be a slight catch in the range of motion, but we’ll see what happens – maybe occupational therapy will take care of that.

So, if anyone is reading, the elbow surgery went very well, but migraines are currently kicking my butt.  And I hope to have new content up in a week or so.

Here’s to good health,

Crew Dog