Tuesday, December 15, 2015

Have I Mentioned I've Been Migraine-Free?

This is one of my long rambly posts.  But enough people have asked about my lack of migraines.  So here we go.

I've been migraine-free since the end of February of this year (2015).  This is huge.  If you've live with any kind of recurring or chronic pain, you'll hear the miraculous wonder in that statement.  If you're like I used to be and think migraines are just people with bad headaches being big wannies, you may not care about any of this.

In Feb of 2015, I had a month-long migraine. I barely worked that month. I lost 10 lbs from not being able to eat from all the migraine-induced puking. This was another of periodic migraines I started having in early 2008.  But I had never had one for a whole month.  I had never felt so "wrong" that I was scared.  I mean, scared.  My mother got me into the ER, barely able to walk, dry heaving, couldn't talk, could barely see. Sounds familiar to some of you, I bet. 

My blood pressure was stroke levels from the pain. Usually, they dose me with IV anti-nausea and other things that make me loopy and tired. I tend to sleep and wake in an hour or two able to deal with light and sound, kissing doctors and thanking them for the miracle of making that my-skull-is-about-to-explode pain go away. This time, the cocktail in my arm barely took the edge off and the blood pressure stayed dangerously high. At one point while I dozed, my heart rate dropped from around 128 bpm to 30 bpm making my mom have to rally help - nurses shook me awake and annoyed me in my deep stupor. After about 4 hrs or so, I went home with a scrip for blood pressure meds, still unable to eat or function. 

The ER doctor recommended I see a neurologist. I'd seen one before for neck bone spurs. Like all the other doctors I asked about my migraines, he told me no one really knows what causes migraines.  They all present differently.  Everyone has different triggers.  Of all the different meds available, everyone will swear this one works while that one doesn't.  So I stopped asking.  Why waste a specialist co-pay to have some doctor shrug and say we don't know but try THIS pill.  So when the ER doc gave my mom the neuro info, I planned to toss it.

The next morning, I was so bad again - and feeling so "wrong" again - I called my mom.  She came, saw my condition, and called the neurologist. You know how long it takes to get an appointment with neurologists? You make appointments 6 weeks out.  Mom described my situation and they said bring her in.

STEP 2: [I'll get to Step 1 later]  Get to a neurologist (or other doc) that understands the brain's metabolism and its role in migraines. It helps if my mom is there to drag you but I'm not sure that's a viable option for most of you.

My mom took me to the local Scott & White clinic where we saw the amazing Dr. Stephanie Vertrees. I didn't hold much hope but I was too sick to protest.  She proceeded to explain that migraines are an issue with the metabolism in your brain. Now here I will go into my "here's how I understand it" language.  Think of all the parts of your brain and what they do in your body. Lots of parts, lots of functions.  Lots of tiny things and major things are controlled by that big blob in my head.  So if the metabolism is off over HERE in me, then I'm in pain, puking, sweating through 4 blankets, sensitive to light and sound, etc.  If it's off over THERE in someone else, it presents as a stroke and they can't use one side of their body.  For others, they lose sight. Some see halos.  Some feel like they have the flu.  Others are just not hungry.  It's why everyone has different triggers and different remedies help or not.  This is precisely why it's really hard to nail down for doctors.  It reminds me of the difficulty M.S. patients have in getting diagnosed correctly.  They endure months or years of being misdiagnosed and/or people thinking they're hypochondriacs. Migraine sufferers do, too, sometimes.

Dr. Vertrees explained that some people are having migraines and don't even know it.  I was just one of many suffers where the pain and puking centers are affected.  Yay me.  The weird thing is, we also discovered my Austin allergies (Google that and you'll see Austinites feel very uniquely plagued by allergies - to the point many just accept it as their fate and kind of brag about their suffering.  I was one such Austinite) didn't exist.  Well not all of them.  I suffered for years during every flare up of every pollen or mold or dust around.  And I mean snot factory from hell that eventually settled in my lungs and gave me bronchitis.  Or gave me sinus infections.  When Dr. Vertrees saw me, I described my ER visit was complete with painfully full sinuses from my allergy congestion.  So I knew that was my trigger.  She pulled up the CT scan they had done and showed me completely empty sinuses.  COMPLETELY empty.  But in the ER - and in her office - I was swallowing copious amounts of mucus draining down the back of my throat.  Yah.  My brain was off kilter.  And my migraines mimic sinus allergies.

STEP 3: Tell the doc EVERYTHING you're taking, how much, and for how long.  Discuss what to remove and what to add. And I mean everything. Everything you put in your body - food, coffee, alcohol, weed, other - affects your body. Your brain is part of your body. It matters.  Tell your doc everything or the solution they design for you may not help.

What to remove: Dr. Vertrees weaned me off my self-imposed regimen (i.e. - "The Only Thing That Worked For Me") of the evil Sudafed in the morning, Benadryl at night, and Excedrin Migraine whenever I felt the first inklings of a migraine. I kept this in my bag, some at home, and some at work.  I tried to never be without my rescue meds within arm's reach.  Sadly, what had actually worked in the beginning when nothing else would had become one of the things whacking my brain's metabolism.  All of those things work fine here and there - when actually NEEDED.  But I was dosing this almost daily.  Yah you may say 'Stupid' and you may be right.  But let me tell you - or ask your friends that suffer migraines - when you find something that stops that pain?  That pain that has you crawling across the floor to puke into anything you can get to?  Yah, you take that and stick to it.

I had actually already started weaning myself from Sudafed as I was seeing my allergy symptoms were persistent with or without it.  And I knew it wasn't something to take daily.  That may have been the trigger for my month-long migraine: Withdrawal.  So the part where it will get worse before it gets better was already behind me.

What to add: Dr. Vertrees put me on daily doses of three over the counter supplements - Magnesium, B2 (riboflavin), and CoEnzyme Q10 - and one prescription antidepressant - Amitriptyline.  Now this is where I will speak caution.  She gave me this combination.  She may give you a different combination.  Amitriptyline was her second choice of antidepressants for me.  Her first choice would have put a strain on my single kidney.

For addressing acute pain symptoms, she gave me a three level attack.  I mentioned that the ER usually hit me first with anti-nausea meds.  They found that anti-nausea meds work better on migraines where the big time pain killers they were trying seemed to make them workse.  So my first level of attack was - at the first feelings of "oh here comes a migraine", I took a prescription anti-nausea she gave me - 10mg tablets of prochlorperazine (yes I typed that while looking at the bottle).  We all have different things that we recognize as precursors to a migraine.  I wasn't going to risk it.  So the first few times I felt it, I hit it with the anti-nausea med.

If that didn't seem to do the trick within 15-20 minutes (and I often didn't wait that long to find out), I hit it with prescription Naproxen (550mg).  That's a smidge over two Aleve.  If I still felt things escalating, I hit it with a prescription 40mg pill of Relpax.  This stuff is pricey.  She gave me a scrip for 9 pills.  I thought that's insane and won't last me.  I just looked in my original bottle and there are two still in there.

I hit my "here it comes" moments with the first one-two punch of the anti-nausea + Naproxen quite often in the first two months.  I've only used 5 Relpax and only had two migraines break through (in the early months).  But the two that broke through didn't lay me up in bed for 48 hrs or have me puking.  They were just bad headaches that made me feel like I had a mild hangover.  But I was functional.

STEP 4: Take the damned meds.

So as of March 2015, that was my new daily regimen. Seriously easy peasy.  The only other new thing was to remain on the blood pressure meds.  It took a couple of months working with my primary doc to get the right med and dosage but I'm good in that area now.  At my first 6 week follow up (I think it was 6 weeks), Dr. Vertrees was so happy with my progress, she hugged me!  I told her I didn't do anything!  All I had to do was take 4 things every day.  How hard is that?  She told me I'd be surprised how many people don't take them or don't stick to them.  I thought, those people weren't barfing into a bucket wondering when their right eye would explode.  But what do I know.

You'll notice my steps started with Step 2.  I went back and changed that when I thought of this.  

STEP 1: Keep a headache journal. 

If you want to work with someone toward a solution, keep a headache journal for a while.  I'd suggest for a month or two.  Bring that with you to your doctor.  It will help them immensely.  Write down every head throb, pain, migraine, weird bodily symptom. Note when it happened.  Where it happened.  What was going on?  Were you stressed (I had a particular stressor at work last year that would send my blood pressure into my ears when he walked into my office)?  Had you just eaten something?  Did you just wake up?  Did it coincide with your allergies?  Did the low-pressure system blow in and knock you off your feet?  Did it start with a sinus pressure headache?  Anything you can think of.  That will help you and your doc see patterns.

MY RESULTS:

I have been out of the ER for migraines since that stint in February 2015.  I haven't taken anything stronger than Aleve.  I have taken Sudafed a few times when I had a cold or flu.  My seasonal allergies are gone.  Sometimes I feel a flare up but wonder if that's really allergies or remnants of migraine activity.  I've thought I should get a scratch test to find out for sure.

I have a big ol' bottle of the anti-nausea pills that I don't need any more.  I have a bottle of Naproxen in my bag and a partial bottle at home.  I don't keep any in my work desk.  I rarely take it.  And as I said before, I still have two of the 9 original Relpax pills and doubt I'll use them.

I'm currently weaning myself (by doctor's direction) from the Amitriptyline, magnesium, CoQ10, and B2.  I'm down to taking it about twice a week.  And no headache symptoms.

I have no doubt the stress of my first divorce (complete with shingles) back in 2007-2008 was the straw that broke my camels health.  The resulting depression eating (or lack thereof) messed up any nutritional stability I may have had.  The subsequent resuming of my typical American diet took another axe whack at my body's health.  So you can see the long road to just totally hosing my body's metabolism.  And therefore my brain's metabolism.

I'm trying to eat better for my migraines, my blood pressure, and so my kids aren't dealing with the trauma of losing their mom.  I don't ever want to go back to the pain of those migraines.

My results with Dr. Vertrees speak for themselves.  The explanation of migraines being directly linked to the person's brain metabolism makes absolute sense to me.  Addressing that with meds and nutrition makes absolute sense to me.  Even as a person who prefers not to take meds (believe it or not), I would do it again in a heart beat.  I will NEVER deal with that pain again if I don't have to.

That's what worked for me.  If you're in the greater Austin area - or can even drive here easily - get to Dr. Vertrees.  She's no snake-oil salesman.  This is the real deal.  She's incredibly nice and the Scott & White staff there is stellar.

Take that how you will.

1 comment:

Xin Dear said...

Just read your blog posts. Stay strong not only for your kids, but also for yourself! =)