Chronic migraine is defined as 15 or more migraine days a month. For those who suffer from chronic migraine, this is not a condition that can be treated by popping an OTC pain reliever and going about the day. The symptoms of a migraine are debilitating. There is now an expanded range of treatments available for you to consider. Having an arsenal of coping skills will help you get through the bad days.
WHY YOU NEED MIGRAINE HEADACHE TREATMENT
Spending more than half of the month unable to function disqualifies you from participation in normal activities. Learning to cope with a plethora of doctor visits, medications, chronic pain, and corresponding depression substantially lowers quality of life.
The exact mechanism of migraine is not fully understood, but is considered to be of neurovascular origin. There is research available on triggers, precursors, symptoms, treatment options, and innovations. Coping with the aftermath and associated mental health impact is a struggle. Finding coping skills that work for you is a must. Some solutions may not be ideal, but they are solutions.
Three years ago my migraines soared out of control. Two or three headache days a month exploded into chronic migraine status. This happened to coincide with an increase in perimenopause symptoms. In fact, in 8 more weeks, I may be considered in full menopause at 48 (yay me!).
Migraine is often diagnosed around puberty. Migraine is hereditary in 2/3 of people. In my case puberty was the triggering event. For many years my migraines were so severe I would become paralyzed on one side, with drooping of facial features. I literally looked like a stroke victim.
In those days it was common to make house calls to your doctor to be injected with anti-nausea and narcotic pain medication. As a young adult the treatment was Immitrix at $42 per tablet. After hours a trip to ER was the only option.
Today I am on at least 10 different medications for migraine, and we are still experimenting. There are supplements, magnesium and B12. Tricyclics as preventatives, such as nortriptyline, Lyrica and Celexa. There is Immitrix injection as an abortive, OTC medication, Benadryl, caffeine, and Excedrin migraine.
More prescriptions, Toradol injection (this is a doozy, having to use my leg as a dartboard, makes me a bit queasy), episodic prednisone, anti-nausea, and finally Norco for pain.
I have been getting Botox injections every 12 weeks for the past 18 months. That is 12 injections around the neck, back of skull and sides of skull. It is slightly traumatizing!
Nothing seems to be controlling the number of migraines I get each month. In fact, sometimes the Botox will set them off for days. I also seem to get more migraine days just before the next round of Botox.
I have been on Neurontin, Topamax, and more. Most recently I was prescribed Inderal as a preventative. Inderal is a blood pressure medication. I already run at 90/60, this was an experiment.
For two weeks I was sick to my stomach and woozy all the time. After two weeks I refused to take it. I have lost nearly 4lb in a month due to medication and migraine. That is not good; I am a skinny girl as it is.
Narcotics are no longer recommended as a first line treatment. It is thought that narcotics not only create addiction, but cause rebound headaches. Overuse of any of the other medications can also cause rebound headaches. It is important to take medication as directed.
Knowing your triggers and avoiding them is part of managing migraine. I avoid chocolate, oranges, and cooked tomato. Acetic acid can be a trigger for me. I avoid msg and nitrates, minimize colorants, additives, and preservatives. I try to stay hydrated, get the right amount of sleep, and for me it helps to have a routine. Sleeping in just an hour can trigger an episode.
There are many other risk factors for migraine. You will have your own triggers and situations to avoid. Simple things like strobe lights can set of migraines. Do some research and you may find triggers you hadn’t thought of.
IT’S NOT JUST A HEADACHE DAY
Precursors manifest days before an actual migraine headache episode. Euphoria, muscle tightness, vision issues, coordination, and thought process disturbance can occur.
Aura, a blinding visual disturbance can last an hour or more. Once aura releases, the pain rolls in. Learn to notice changes in your cognitive senses to better manage your migraine.
Light and sound sensitivity, gastrointestinal disturbance, nausea, and excruciating pain on one side of the skull, is just part of the migraine episode. Migraine can last anywhere from 4 to 72 hours.
After the episode there is fatigue, confusion, weakness and depressed mood. Chronic migraine is 15 headache days per month. With the precursor and post migraine symptoms, a majority of the month you feel horrible.
Gone are the days where a shot of narcotics is the go to treatment. Now migraine is managed by preventatives, abortives, anti-depressants, anti-seizure, muscle relaxants, blood pressure medication, injectable hospital grade NSAID, and Botox injections.
What happens when none of this works? Your life is disrupted and you have to find survival solutions. Not one of us is able to check out of life for most of the month.
If a medication does not work, seek another option, and another, and another. Unfortunately a lot of the common medications for migraine have side effects. Drowsiness, difficulty thinking, coordination problems, dry mouth, and fogginess are very common. Weigh up if the benefits of the medication outweigh the side effects. Speak up on your own behalf, be your strongest advocate.
HOW YOU REALLY FEEL
Depression as a direct result of chronic migraine is common. Your life and productivity is completely turned upside down. Not being able to participate in activities that you enjoy without pain makes it difficult to even want to try.
Putting on a brave face and battling through the pain takes a toll. Resentment is a factor when you cannot work as hard as you want to. There are days you don’t want to get out of bed. Everything feels like it’s too much to deal with.
Relationships suffer because you are short tempered, tearful, resentful, and at times absent. You are emotionally unbalanced. You are curled up in a ball in the middle of the bed unable to sleep, but in too much pain to get up and move around.
It is difficult, if not impossible to explain to others how bad the pain is. The level of dysfunction is overwhelming. Constant chronic pain is its own level of hell.
STRATEGIES TO COPE
Do not compare yourself to others. Do not allow others to make you feel like you are less than. Stay away from toxic people. Surround yourself with people who make it possible for you to be the best person you can be on any given day. People who genuinely care will help you achieve tasks.
Reevaluate your responsibilities. Delegate where you can. On the good days, do as much as you can to plan and organize, so on the bad days you can take care of business with a minimum of involvement. Automate as many tasks as possible.
If you can’t avoid responsibility, on bad days rely on lists and routine to get you through. On good days make freezer meals for a quick dinner. Or stock up on super quick soups, pastas, and sauces. Project management is your best ally here.
WHAT YOU CAN DO
Understand that episodic depression is part of chronic migraine. You and your doctor will come up with strategies to offset the impact. Seeing a therapist on a regular basis to share your frustration and help bounce ideas off may help. Don’t be afraid to ask for help.
If your health provider offers headache or chronic pain clinics or classes, take advantage of it. The classes are a mixture of yoga, meditation, coping skills, and cognitive behavioral therapy. The more tools you have, the stronger you are going to be.
BE KIND TO YOURSELF
On the days you are unable to function, allow yourself some time. Pull the curtains, get into your favorite jammies, grab a heating pad, and curl up in bed. Sometimes just being warm and in a comfortable place helps. Keep simple, easy to prepare foods handy, as well as your favorite warm beverage (ginger tea is great for nausea).
On bad days when you can’t avoid work or social responsibilities, make sure you have all of your medications with you. Stay hydrated, try and eat, take your sunglasses, sit out of bright light. Have someone else drive.
Have a strategy for when you get home if you are still suffering. A lot of things are unavoidable, but you can be prepared. Being prepared lessens stress responses.
One of the best tools is a headache log. Jot down what you were doing just before the migraine. What foods have you eaten, did you sleep ok the night before? Circle days on a calendar or write down dates and severity on a log sheet.
You will be able to identify patterns, or lack of. Having this information helps your doctor understand how migraine occur for you and how best to tailor treatment.
FAITH, STRENGTH, AND HOPE
There may never be a cure for migraine. You may have them for life. Migraine is something you suffer from. It does not define who you are. Changing mindset to focus on solutions rather than the problem is helpful. Do the best you can each day. Take it one day at a time.
If you don’t think you can stand it another minute, go one minute more. Learn to accept that some days will be unproductive. Have faith that there is always research occurring and new medication on the horizon. Your strength is what gets you through the days. Hope is believing that things will get better.
If you see your GP for primary care of your migraines, and you don’t feel you have made much progress, ask for a referral to a neurologist or other specialist. A good neurologist will take the time to explain what avenues you can explore.
A good neurologist will thoroughly review your current medications, and explain possible benefits of each new drug he/she suggests. You should also have access to your neurologist if you have any questions, or any medication side effects that need to be addressed.
FIND YOUR SOLUTION
Coming to terms with something that is effectively a disability is a difficult process. Your life has now become unpredictable. Your body and your mind get hijacked for at least half of the month. Don’t let it win.
Double down on the good days so that the bad days are easier to cope with. Create routines for yourself. Allow yourself to be in pain and not feel well, without guilt. Work with your health care provider to find the best solution for you. Don’t give up.
Other useful articles explain how to identify and correct negative self-talk, and how to set goals for yourself.
CLICK HERE TO ACCESS THE MIGRAINE HEADACHE LOG SHEET AND DATA SHEET
How do you cope with chronic migraine? What works, what doesn’t? Do you have medications that help or have made it worse? What are your triggers? Comment below or drop me a line. I would love to hear from you.
I will consolidate your answers and produce a follow up infographic or chart to compare our experiences, strengths, and hopes.
Aimovig: I discussed this with my neurologist. Clinical trial was conducted with a small group. It only prevents 1-2 migraines a month, which isn’t substantial. Getting into the clinical trial is difficult; 1 criterion is not using pain medication more than 4 days a month. I was also told that it was expensive.
Emgality: Brand new to me. I just discovered it researching this article.
- History of migraines: http://migraines.org/treatment/treathis.htm
- American migraine foundation: https://americanmigrainefoundation.org/understanding-migraine/chronic-migraine/
- Community and lots of information: https://migraine.com/
- Information page: https://www.mychronicmigraine.com
- Botox prevention page: https://www.botoxchronicmigraine.com/
- Migraine information: https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201
The latest medications:
- Emgality: https://migraine.com/news/emgality-cgrp-approved
- Aimovig: https://www.aimovig.com/