Saturday, February 6, 2016

Family News and migraine

What's goin' on 

Andrew and Jenny are doing a kitchen remodel.  There is lots of discussion around paint colors, what it will feel like to tear that wall out and open up the kitchen to the living room and just when this is all going to happen.  Since for us, this is a vacation to Santa Cruz, we ride our bikes, walk on the beach and talk about which route to take this time driving our van north towards home.  Book and movie recommendations are always a topic.  Friends Jacob and Sally are getting married and we're all invited to the wedding in Poulsbo, Washington.  Andrew and Jenny are getting married in May in Sayulita, Mexico.  The foundation of Ben and Leslie's new house has been poured.  The kids are coming over on Sunday.


Notice there is no discussion about headaches, neither my son Ben's nor mine.  This is almost always the case.  I don't usually talk much about all my head pain because while my life seems virtually consumed by it, I feel as if it's probably a bore for everyone else.  And in fact I'm bored with the topic myself.  This in spite of the fact that my headaches have become near daily events and Ben's have spiked recently.  He functions as a nurse with dull daily head pain which sometimes spikes to severe pain by the time he clocks out.  For both of us the pain pattern and frequency fluctuates with the season, stress level, ambient noise, whether or not we get a good night's sleep and more.  Of course sleep is at a premium for my son with a pre schooler and a toddler at home and a new house under construction.

When Ben and I are together with the kids busy playing, that's when we usually check in to see how the other guy is doing and offer up any new or interesting information we've come across.  Here's what's happening for me right now.

Mood

I'm in a pretty good place emotionally right now.  My mood usually tracks with my headache frequency and season of the year.  My headaches are currently less frequent thanks to recovery from recent illness and relatively new treatment options.  And while the February winter weather is oppressive, we're finally headed out for 10 days in Mexico starting next week. 

When my headaches are out of control and I can't do the things I like to do, I am downhearted and at least a little depressed.  It's hard for me to maintain a positive attitude, and against all logic, I struggle not to blame myself.  Self blame is quite common among those with chronic illness.  Articles abound on the internet about how frequent and counterproductive this is.  One of my favorite authors on the subject, Toni Bernhard writes about this negative emotion and how to get beyond it.  Find her blog, Turning Straw into Gold, at the address below. 
https://www.psychologytoday.com/blog/turning-straw-gold

Mid winter in the Pacific Northwest is wet, cold and gray.  The "monsoons" start in mid to late October.  The weather warms up in the spring, but the rain and gray skies often continue through June.  I usually do ok until after holidays.  Then I run out of patience, and my mood slides into the gutter like the rain on a wet day.  If I can stay active and engaged with friends and family, I do better.  But if I am flattened by headaches, my mood deteriorates.  I can tolerate one or the other, headaches or Northwest winter, but putting up with both is a killer.

Current Meds 

Preventatives:  Baclofen, klonopin, mirtazapine, zyprexa and CBD cannabis capsules
Abortives:  SpringTMS and naratriptan
Rescue:  Fioricet w/ codeine,  cannabis via vaporizer for pain, nausea and sleep
Sleep:  Zolpidem

I'm very fortunate that medical marijuana is legal in Washington, because nothing else except narcotics touches it for conquering pain and nausea while waiting for the abortives to work.  The downside is you can't travel legally out of the State with it, and I certainly can't take it to Mexico, our February escape destination.  In anticipation of traveling, I have spent the last two weeks weening myself off marijuana to see how I do.  Not bad, just less comfortable.  Poor sleep is actually the worst of it.

I spend hours nearly every week staying on top of any and all headache news that hits the national media, reading any peer reviewed scientific articles I can get my hands on, checking in on the blogs to make sure I'm not missing any new possibilities, learning more about diets that seem to be working for others, seeing specialists including, right now, my headache guy, an acupuncturist, and a mental health provider.  I log in hours every month or two haggling with my insurance company over medication coverage. While I share some of this information with my husband, much if it is filed away or filtered for personal use inside my own skull.  It's a world of feeling and information that tends to live within me alone.  Here's just a little bit of the latest 

Current and future possibilities

Spring TMS


This device involves transcranial magnetic stimulation to abort a headache.  It rents for $ 250.00/ month and will likely not be covered by the vast majority of insurance companies.  It just became available in late December.  I got mine 3 weeks ago.  It's early days, but the frequency of my harsher headaches is down, and I'm not using quite so much abortive medication.  www.eneura.com/tms.html

GammaCore

A device that delivers electrical stimulation to the vagus nerve in the neck - to abort or prevent a headache.  Available in Canada but not in the US even though this multinational company is headquartered in the US and FDA drug trials have taken place here.  It's a pricey little devil at approximately $ 475.00 (Canadian) for a limited number of doses.  Then you have to send it in for a recharge of the device, which no doubt will be accompanied by a monetary recharge as well.  There is no information on when this baby will be available in the U.S.     
http://seakaproducts.ca/product/gammacore-150-doses-cw-gel/

GammaCore

Migraine vaccine, CGRP Antagonists

This pharmaceutical is not really a vaccine but acts kind of like one.  There is a lot of excitement about the drug in medical circles.  For me, it's hard to get excited about a "solution" that is still undergoing FDA trials and is, at the very least, 3 years from market.  On the other hand, my son is holding onto the possibility that this new approach will solve his migraine problems.  Truthfully, at age 69, I just don't have that many years left, while he does.  Aging changes your perspective and the quality of your hope.

When it becomes available, either monthly or every 3 months or so your doctor will inject humanized antibody CGRP to prevent headaches.  So far, research looks promising, but it's a long wait if you're having near daily headaches.  There are FDA drug trials I'm looking into, but chances are that I won't meet the requirements.  For the most part, those over 65 don't qualify for a drug trials.
http://www.pacificrimheadache.com/news/2015/05/news-from-the-international-headache-congress/

Cefaly


The Cefaly is a (tens) transcutaneous electrical stimulation mini machine that targets the trigeminal nerve.  I bought my Cefaly in Canada where it is approved as both a preventative and abortive device.  Settings may be different for one prescribed and purchased in the U.S.
One push on the button of my Cephaly activates a 20 minute session that is designed to abort a migraine.  Push the button twice for a preventative session, three times for a relaxation session.  This device worked for me for a while, and then it was no longer effective as an abortive.  I gave it to my son who thinks it is helping to reduce intensity and frequency of his headaches.  Purchase price:  $349.00.  http://www.cefaly.us/en

Emsam transdermal patch

This medication is an MAO inhibitor, a drug for depression that has a long record of successful (for some) off-label use to prevent migraine.  It comes in pill form with an extensive list of dietary restrictions that are necessary to prevent serious drug/ food interactions.  The new patch doesn't have these restrictions.  Available now.  Pricey at $1200.00 per month.  My insurance would pay half, so at 
$ 600.00 per month, I haven't leaped up to try this.  Neither have I crossed it off my list entirely.  When I told my family about the patch and the price, my sons offered to help with the payments.

Sphenocath 

This procedure involves threading a catheter (no needle) up your nose (waaaay up) to access a ganglion leading to the trigeminal nerve.  When on target, the doctor injects the anesthetic marcaine.  Repeat 2 or 3 times and you may get some lasting relief.  I tried this, and it made things worse giving me a nasty sinus-like headache which was minimally responsive to my usual abortive medication.  No repeats for me.

Medication

I am really at the end of the long list of medications that act to prevent migraines.  Due to age and genetics, I tend to have exaggerated side effects and poor response to many pharmaceuticals.

Alternative treatments

While I'm always open to new ideas, the most common so called alternative treatments have had no impact on the frequency and severity of my headaches.  These include massage, physical therapy, acupuncture and Chinese medicine, chiropractic and naturopathic treatment, biofeedback, cognitive behavioral therapy, herbs and supplements, essential oils and the migraine diet.  Massage feels good;  acupuncture helped with carpal tunnel and digestive issues; biofeedback has helped with relaxation and gut problems; physical therapy exercises are healing long-term achilles tendonitis and yoga helps me to feel better overall.  None has touched the headaches.  I continue to see a mental health counselor to help me cope with chronic pain and stay open and curious about new ideas and approaches.

Last spring I began meditating, which does seem to reduce the severity of pain on some days.  This little chink in the brick wall of head pain is significant, so I continue to explore this path.  In the 1970's Jon Kabat-Zinn, a Buddhist monk working with others at the University of Massachusetts Medical Center, developed  an 8-week course for those with chronic pain.  Since then it has morphed from one class to a mindfulness movement.  Last summer I took the class, Mindfulness-based Stress Reduction, which borrows from the traditions and practices of Buddhism, yoga and progressive relaxation using meditation, breathing, movement and stretching.  http://www.umassmed.edu/cfm/stress-reduction/history-of-mbsr/





2 comments:

  1. I was suffering from migraine and stress issues. Have heard that chiropractic care is very beneficial in curing such critical health problems. Planning to visit a professional chiropractic Port Credit center early next week.

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    Replies
    1. Good luck. In my experience chiropractic treatment was not helpful.

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