my treatment plan

If I was given a loudspeaker to convey one little point to a sea of new and non-migraineurs, I would tell them there’s no magic bullet for migraine.

For people grappling with episodic or chronic migraine for the first time, the lack of decisive medical answers can be endlessly frustrating. For people who know little about the sometimes debilitating condition, it can be tempting to offer potential, but often unhelpful solutions. For these reasons, I wish the wider public could be made aware of how devising a treatment plan for chronic migraine or any kind of chronic pain is a highly individual and lengthy matter of trial and error that affects just about every little corner of daily life. Specialists may have many helpful suggestions, but there is currently no single treatment that is effective for every person with migraine, and accessibility is a serious issue as most options are not covered (at least not in Canada) through Medicare.

So why share my treatment plan if I know that it is highly individualized? A few reasons:

1) Some readers have asked about it.

2) In case any of these strategies are new to you.

3) To serve as a visual representation of all the hard work I (and we) put into doing our best to live better with migraine.

Note: I have precisely zero medical training. The following list is not intended as medical advice.

All cost estimates are in Canadian dollars.


 

My Chronic Migraine Treatment Plan

1. Lifestyle Adjustments

Some of the most dependable strategies for preventing migraine attacks come down to our daily habits. The following are strategies that I employ whenever possible. Thanks to the Women’s College Hospital Headache Clinic for many of these tips.

  • I attempt to maintain a regular sleep schedule. This can be difficult during an attack and there’s not much to be done about that. Even when the pain is mild I am often anxious about falling asleep on time which, inconveniently, makes it harder to fall asleep. Meditation, yoga, ear plugs, a noise machine, peppermint oil, and light snacks before bed can help. I do stay up past my bedtime on purpose for the occasional social gathering, in which case I try not to sleep in too much or nap the following day as these activities often lead to pain.
  • I attempt to exercise regularly. Sometimes exercise exacerbates pain. Other times it gives me a nice little boost of endorphins and makes me feel more in control of my body. I have to gauge my ability to exercise on an hourly basis. Walking or biking outdoors with ear plugs and sunglasses, gentle yoga, and the occasional swim (when the pool is not too loud and perfume-filled) have worked best for me.
  • I eat a protein-filled meal first thing in the morning and at least every three hours throughout the day. Low blood sugar and migraine are best buddies.This means I have snacks in my backpack everywhere I go. Once I ate an entire bag of cheese curds before I had paid for them. Greek yoghurt and nutrient-filled smoothies with protein powder are my faves, and are easier on my IBS than lots of meat, nuts or soy.
  • I strive every day to find and create trigger-reduced environments. Thanks to the cooperation of my partner, my home is now fragrance-free, and I always have ear plugs on hand for when the neighbours get rowdy. Carving out a trigger-reduced space at work is much harder. I am entitled to several workplace accommodations on the insistence of my doctor, but regardless, high school is a loud, bright, emotionally charged, stinky place. Tinted Fl-41 prescription glasses (luckily covered by my private insurance), custom made musician’s earplugs ($260 bones out-of-pocket) that filter loud noise, and an air purifier (found on craigslist) have been helpful. Shutting myself up in a classroom alone at lunch for at least 30 minutes of quiet time is also key to making it through the day. Sometimes I have to ask colleagues to lower their voices, leave my classroom, or respect my right to a quiet work environment. This is always awkward, but so necessary.
  • meditate for a minimum of 20 mintes daily even though most of the time I feel like I suck at it. It still helps. When I don’t do it, I am more irritable and susceptible to pain.
  • drink lots of water, all day every day.
2. Diet

There are limitless migraine diets out there, one of the most popular being the “low-tyramine diet” by the U.S. National Headache Foundation. Others proclaim vegetarianism is best, and still others insist on purely organic, gluten free, paleo, or “miracle food”-infested kitchens.

For me, any attempt at a very strict diet has led to more stress than benefit. I have enough on my plate already; a sparkly, expensive, super-restricted new diet amidst pain and fatigue is just not practical. After some failed attempts at special diets, I now focus on getting regular, balanced nutrition down the hatch while avoiding the following well-known triggers:

  • Artificial colour and flavour
  • MSG/ other synthetic ingredients I can’t pronounce
  • Aged meat and cheese
  • Preservatives such as added nitrates or sulphites (that means no wine or balsamic vinegar)

On account of my gut troubles, I have also necessarily become one of those white, middle class, yuppie gluten avoiders. Sorry. A girl’s gotta poop once in a while.

Chocolate doesn’t bother me (thank the sweet heavens) and the very occasional organic beer or vodka drink seems to be okay too.

3. Supplements

I arrived at this particular list of supplements through the recommendations of a naturopath and headache specialist/neurologist. Even with a daily pain journal I have found it very difficult to discern what works and what doesn’t, so I have relied on evidence-based science to guide me. According to to The Migraine Trust:

Among the most commonly recommended vitamins and supplements are magnesium, riboflavin, and Coenzyme Q10 (CoQ10) while the most common herbal preparations are feverfew and butterbur.”

Butterbur (also known as petadolex/migrainol) has recently been deemed unsafe by medical findings, but I have faith in the others. I take:

  • Magnesium Bisglycinate. Less likely to disrupt bowel function than the more common magnesium citrate, I take up to 800 mg daily. Naka sells bottles with 120 200mg pills for roughly $23. For more information, visit migrainesurvival.com.
  • Feverfew and Ginger with a small amount of magnesium are sold together in a “Migraine Formula” by Webber Naturals and a bottle goes for anywhere between $12 and $20. I take two capsules per day, and believe my nausea has been reduced with prolonged use. Read more about the results of a clinical trial of feverfew here.
  • B2 (Riboflavin). This is the most affordable of the migraine supplements at about $7 per bottle. With no known risks, and solid medical evidence for its effective use as a preventative, I take four 100g capsules per day.
  • CoQ10 is the priciest of migraine supplements at up to $50 per bottle. The most affordable version I’ve found is made by Natural Factors at about $26 for 75 100mg capsules. I take two per day. The evidence for this supplement is not as strong as for the others.
4. Medication

As for many people with migraine, medications have been the biggest source of treatment plan frustration for me. Here’s why:

  • Over-the-Counter Pain Medications such acetaminophen (Tylenol) and ibprofen (Advil) basically do zilch to ease my pain, but sometimes in a pinch I try them anyway.
  • Triptans. As the only migraine-specific medication out there, triptans were helpful at first. Then without proper information about medication overuse headache (MOH), they lost their efficacy while sending me from episodic migraine into chronic. Not cool. I’ve tried a new one recently that seems to be helping (they all work a little bit differently, so it’s worth trying different kinds if you can). Of note: They’re hella pricey unless you have private insurance.
  • Prescription Pain Medications Tylenol 3s can sometimes take the edge of a severe attack for me, but I find the side effects (constipation! prolonged recovery time!) mostly intolerable. In the beginning, T3s also contributed to significant medication overuse pain. I now reserve them for emergency situations only.
  • Topiramate (Topomax). Affectionately nicknamed “dopomax”, I stopped this off-label anti-seizure medication due to severe side effects of fatigue, brain fog, and depression. Ick.
  • Amitriptyline (antidepressant). This is the only medication that has stuck with me throughout. Although continuously trying to decrease my dose due to some minor but unpleasant side effects. On the upside, it helps me get to sleep at night, and I think has helped with the pain-induced depressed feelings, but it’s hard to tell.
5. Manual Therapy
  • Massage Therapy. This one is tricky. It took me a long while to find an RMT who could effectively help to relieve tension without causing more pain. The time and money involved here can be a serious deterrent. I’m lucky to have found a therapist who is incredibly intuitive and lucky to have some insurance coverage for this. It helps with the neck and back pain that so often contribute to my attacks.
  • Acupuncture. Generally, the full body approach has not done much for me, but the localized, deep needles to treat TMJ are a life saver. I seek this treatment 1-2 times per month. Again, it took me a while to find a practitioner whose specific methods did more help than harm.
  • Chiropractic. In addition to giving me a better range of motion in my head, neck, and shoulders, so far chiropractic adjustments have helped me with pain prevention through improved posture and reduced tension.
  • Osteopathy. No luck here. Shelled out tons of cash for not a whiff of pain relief.
6. Clinical Therapy
  • The links between chronic pain and depression are still being sorted out in the medical community, but it’s well known that they often occur together. The early days of chronic migraine were frightening, angering, and severely depressing for me. I found it necessary and incredibly helpful to seek the professional help of a social worker. After a few months, I felt confident to use the strategies from these sessions on my own.
7. Space-age Headgear, etc.
photo 2 (13)
  • Cefaly. At a whopping $300 plus tax and electrodes through costco.ca, Cefaly ain’t cheap, but it is effective for some as both a preventative and abortive treatment, including me. Specific details and review to come.
  • BOTOX. $800 per round plus injection fee! Couldn’t have tried this without my private insurance! On the fourth round. I think it’s helping. Hard to know with all the other stuff I’m trying.
  • Peppermint Oil/ Tiger Balm. Sometimes, applied to the jaw joint and neck, these ointments have a soothing effect during an attack.
  • ICE. Gimme gimme gimme. I need it all over my head during a severe attack. Numbness= good. Sometimes heat on the hands and feet feels nice too, even if just as a temporary distraction.

For more information on devising an effective treatment plan, visit:

migraine.com

www.migrainetrust.org

www.mayoclinic.org

What treatment options have been successful in helping to manage your chronic pain? Please share your chronic pain treatment-related comments and questions below 🙂

8 comments

  1. Great post, a lot of similarities to my own – it’s strange seeing it all laid out and realising how much goes in to managing it that has just become a ‘normal’ part of life. It was good to be reminded about low blood sugar – I often forget until it’s too late, I think I’ll have to start setting alarms or something to remind me to eat regularly (never thought that would be a problem tbh!) Just a thought, you mentioned TMJ – have you heard of the SCI or NTI-tss? I’ve had one for about a year and it’s made a big difference to my jaw and tension headaches, though not to the migraines. I know everyone is different so feel free to ignore of course but just thought I’d mention it in case it was relevant. Take care and thanks for your blog 🙂

    1. Hi! Yeah- it’s kinda nuts how much life has to change to live better with this thing. I don’t clench my jaw or teeth, so the mouth contraptions aren’t for me. It hasn’t changed your bite? I hear NTIs can be brutal for moving your teeth around…

      1. Glad that’s not an issue for you, I was a class A grinder! I already wore top and bottom retainers so got it ‘built in’ to a full retainer, I know it’s not for everyone and hope you didn’t mind me mentioning it. It is mad how much life has to change, I’m still adjusting and only just starting to accept it 7 years on! Thanks for sharing, I found it a really interesting post 🙂

        1. I don’t mind one bit. Suggestions from fellow spoonies always welcome 🙂 We know there’s no cure-all. Acceptance… Not even sure I fully grasp the concept yet!!

  2. […] Chronic pain has the capacity to change every affect every aspect of a person’s life, and Friday nights are no exception. Before my extended run-in with pain, I happily maintained a robust network of friends. From besties to casual acquaintances and everything in between, I cultivated the full social calendar of an extrovert. I would happily invite 30-odd people to a party and then happily host them until well past midnight. Imagine! I could and did go out for drinks after work, and I would travel across town without worrying whether I’d have the energy to get back home. Of course, all that has changed, and now my social life looks quite a bit different. […]

  3. Zelie Mc Grath · · Reply

    .

  4. I love Ice! and you never hear anyone discuss it as a treatment. I have recently started using Cefaly and I think that it really works well. Thank you for your blog it helps keep me sane…

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