When I first learned about The Spoon Theory it didn’t initially resonate. Part of me felt uncomfortable saying that I was chronically ill especially when I compared my migraines to other illnesses. It wasn’t until I was struggling to get through a day, and I needed help figuring out how to reserve my energy that I then embraced the spoonie life.
My biggest lesson has been to be intentional with my time and recently shared a few ways to save spoons if you’re working with migraine.
The spoonie community is supportive, kind and encouraging. A year later and I’m still learning and adjusting but more than just knowing how to “save spoons”, I have gained strength and important life lessons we all should embrace.
Self Care Isn’t Selfish
Make an appointment with yourself and stick to it like you would any other. You are just as important and worthy of your own time as anyone else. Especially when things get hectic and busy. — via @spoonie_village
Our Minds Are Powerful
The way we speak to ourselves determines the way we feel and how we behave. Our thoughts constantly reinforce our reality. Next time you look in the mirror, begin to appreciate the body you have and the flaws that make you unique. — via @selfcareisforeveryone
Vocalize Your Needs
It’s okay to ask for help. Most people want to help you if you let them.
Some of the side effects as well as noticeable changes (positive or negative).
— Exhaustion — Extreme loss of appetite — Occipital bone pain — Electric shocks (still remain from first month but seem less severe) — Shortness of breath — Strange new body odor — Hair lightening up (and not coloring it or out in the sun for it to change colors)
A total of 15 migraines and 6 triptan days.
When I look at those numbers compared to the previous 4 months prior to Aimovig (when I was on Namenda) it’s not really that much of a difference. I’m having roughly the same amount of migraines and my daily headaches are still consistent, but now I do have a little relief sprinkled in. The difference is if the persistent headache isn’t present the occipital bone pain is. I also had 4 days of mild pain at the beginning of the month, just like in month one and two. I couldn’t really work though because my eyes were too blurry. Low pain and still blurry vision? 😡
Month three was supposed to give me a better idea how I was responding to Aimovig since I was traveling half of month two… and I think it did just that. I had my normal routines, same environment, no traveling, same food, etc. and my take away from December is feeling like it was one of my worst months in 2018.
While I have been able to push myself and be a little more active than the previous two months; I find myself powering through pain again. I wish I could give Aimovig more credit, but I think the reality is my strength.
Week 1 • Nov 29 — Dec 6
On the evening of the injections (140mg) it hurt so badly as the medicine entered my legs and I almost cried. Also some liquid didn’t go in and I wasn’t sure if that was an issue. Instagram and Reddit forums suggested doing the next injections at room temp. Side Note: I did try that for my fourth month injections on 12/27/2018, and it worked, no stinging!
Day 2: I experienced more electric shocks and in different parts of my body at random. Still happening inside my head too but not as intense (only sometimes). ⚡
Day 3: woke up with a horrible headache and as it started to build I took Excedrin and drank some coffee. Felt it was stabilizing but then it immediately flared back up peaking to my highest level of pain. I stayed in bed the rest of the day.
This first week I felt a bigger decrease in my appetite and exhausted earlier than usual.
Day 4: Saw my chiropractor for an occipital massage 💆🏻♀️
Week 2 • Dec 7 — 13
Day 7: felt electric shocks in my butt, foot and calf.
Day 8: almost exactly just the same at last Saturday’s migraine. Stayed in bed all day.
Day 9: headache felt different when I woke up, and had been awake most of the night with pain. Migraine was heavy, especially around my temples and eyes. Additionally, having a lot of occipital bone pain.
Day 10: third day in a row with a continuous migraine… the pain I went to sleep with kept waking me up and continued into am. Pain started to break around 12pm.
Day 11: no sleep = head cold
Day 12: low pain day, trade off = occipital bone pain and shocks ⚡️
Day 13: all day occipital bone pain and shocks ⚡️
Week 3 • Dec 14 — 20
Day 15, 16, 17 and 18: heavy migraine days. also on Saturday again.
Lots and lots of continued occipital bone pain and shocks ⚡️
Shortness of breath coming and going, and just tried my best to meditate and breath deeply.
Week 4 • Dec 21 — 27
Day 21, 22, and 23: The biggest worst migraine flares of the month.
Day 24 and 25: Low pain days!!! Thank you Santa! 🎅🏻🎁
Fourth injection on the 27th… to be continued for next month’s recap.
As far as my treatment with Aimovig I’m really, really feeling like I want to discontinue. I know that I mentioned in my last recap that I’d still like to stay on Aimovig for a total of 6 months, but no one advised me to do that.
I have an appointment Jan 18th to see a new neurologist. They have an extensive holistic treatment plan that I’m hoping opens some doors to figure out the cause of my migraines. I’ve spent the whole year trying to do this myself and it’ll be nice to hopefully find a neurologist that believes in looking at the whole body.
This post is not sponsored and all of these thoughts are my own.
What can I say about working full time with chronic migraine? Well for starters, it’s the toughest thing to go through on a daily basis, sometimes without much or any relief. Physically there are symptoms of migraine that can last from a few hours to all week. For example, I’ve had blurry vision for a whole year now that fluctuates throughout the day, every single day. Emotionally it’s a battle and this is where my mindset, self care and having a support system really come in and save me.
Also, I’d just like to say for the record — many, many more, people have it much worse. Either with a job that doesn’t have empathy, or a work environment that constantly triggers migraine. No two migraine stories are the same. We’re each in different circumstances, with challenges and symptoms that vary greatly. I also realize there are also people who’ve been forced to quit jobs they love, who have been fired or forced to go on medical leave. All of these stories are valid. It’s my hope that through sharing my story I’ll be able to help build awareness around the difficulties we all face with chronic migraine, no matter our circumstances.
There have been more days than I can count that I’ve worked through migraine. It’s never easy but here’s what that all looks like for me.
I’m a full time graphic design consultant, in contract with a corporate company. I don’t have company health benefits or stability of permanent work. I go home everyday with gratitude for my employment. I also hope and pray to have the means someday to work for myself or be able to quit if I still have chronic migraines, but for now financially I can’t.
Migraines at Work
I have triptans with me all the time if needed… but they are my last resort. If I have to take a triptan I also try to lay down for 10-20 minutes, otherwise I’ve noticed my body doesn’t respond unless I also give it the rest it needs.
Applesauce is in my desk cubby because I tend to get nauseous. I’ll eat this if I can’t eat my prepared lunch.
Give my supervisors a heads up. It’s usually low-key, I don’t want to make a big deal about it or cause reason for concern. If it’s bad and I know I’ll need frequent breaks I want people to know I’ll still meet deadlines (if that’s the case).
Ear plugs or headphones all the time! I have hyper sensitive hearing to everything and the smallest noise can often be a trigger.
Take frequent breaks. I’ll either go to the wellness room (aka mothers nursing room) or to my car if I can withstand the city traffic noise.
Cry… sometimes I hold back the tears because it will just make things worse, but sometimes it really helps to release (but always in private).
Meditate and breath deeply! I signed up for the Calm app. I put it off for awhile but with a holiday 50% code I purchased a year membership. So far I really love it and already see the positives to have this handy app while at work. They have so many options for whatever I need… from soft rain/white noise, every meditation and length, music and stories. Side Note: I couldn’t stand the guy’s voice on the Headspace app, but I love that they helped bring meditation to everyone and now we have other apps like Calm too.
Advocate for Myself
Choosing when to work from home or take a sick day (if it’s debilitating) is a real challenge for me. Sometimes knowing I have meetings or if I feel paranoid that I’ve worked from home “too many” days, I’ll sometimes force myself to go into work when my body is screaming for a break. This can lead to a really awful day or multiple migraine days… when I probably could have rested and it would be half as bad. However, it’s always a gamble, no two times are the same and resting doesn’t always mean no migraine but resting is essential to not burning out.
My team is very flexible and understanding. At least two other coworkers also suffer from migraines. However, I get paranoid because I’m not an employee and it’s easy to replace contractors. Then again, I know there’s no protection with permanent positions. I have been let go in past jobs (prior to migraine) for not “feeling like a good fit”.
Anyway, no one has given me reason for my own paranoia, and my contract continues to get extended due to the project I’m on. Furthermore, my direct supervisor is very empathic and will offer to pick up my task or deliver any projects if I absolutely can’t work. I never abuse this generosity and I struggle every time I do have to take a sick day, leave early, or come in late. Basically, be mindful of how your body is feeling and don’t make decisions based on guilt or paranoia. Something I have to continue working on.
Socializing Can Be Energy Draining
Most of the people I work with now know that I deal with migraines… It’s too difficult to hide now, especially with 15+ migraines a month. Some days I do wish no one knew because answering “how are you feeling?” two dozen times a day can be extremely exhausting. Lately I’ve started to fib a little so we can keep the conversation short, but mostly I’m honest and try to keep it positive even if my pain is severe.
Work Dress Codes
In my 20’s I was an executive assistant where I was required to wear business attire. Fortunately, switching careers has paid off and now I can wear whatever I want – especially in the tech industry! I wear a baseball cap everyday because of the fluorescent lighting. 🙌🏻 This totally has helped my eyes so much! My next purchase is to buy some prescription EBD blue glasses.
How to Save Your Spoons
Uber/Lyft, or carpool to work. Driving myself especially in Los Angeles can be the most exhausting part of my day. Sometimes I’ll be feeling mostly ok all day but my ride home gives me a major flare up. My husband has offered to give me rides and think I’ll start accepting more of those offers this next year.
Shower the night before. I use unscented wipes to freshen up in the morning. I know that may sound weird… but it’s really helped me save my energy for my drive or a 10am meeting.
I wash my hair about 1-2 times a week now that I wear a hat all week… nobody knows it’s dirty. Washing and drying my hair can trigger a migraine or make a current one worse.
Prepare lunch the night before – my husband generously prepares all my meals (isn’t he a keeper?!). I usually put a sticky note on my front door because I’ll forget it
I hope this post was helpful. Let me know if you have any questions or if I didn’t hit on anything that you might be curious about.
Some of the side effects as well as noticeable changes (positive or negative) are outlined more in the weekly recap below. — Lightheaded — Dizzy — Decreased appetite — Heightened smells and sounds — Occipital bone pain — Exhaustion
I’m leading this month’s recap with my thoughts because the weekly breakdown became a little more detailed than last month. There were so many variables I felt it was important to share everything. #tmi First, my new neurologist was certain that I have been over-medicating and wanted me to go 6 weeks without pain meds. He prescribed a steroid to help with the pain during the “weening” off phase. I know there is a fine line of when to take medicine for migraine. It can be agonizing (for me) when to decide to take something. Sometimes I’ve waited too long, sometimes I have taken medicine every day, but mostly I try to avoid taking anything. I don’t fully know what all this medicine is doing to my body long-term and I just hate taking something when I’d rather power through.
So, that being said I know with one hundred percent certainty I have not been over-medicating. After a lot of thought and conversation with my husband, I decided to go the first two weeks without medicine and no steroids. This illness has proven time and time again how strong I am, so I took this as a personal test of strength and gave Aimovig a full two weeks without any other drug interaction to do it’s job – especially with the increase dosage. I felt hopeful and confident. I did not do the full 6 weeks “detox” because I also knew that I would be traveling from Nov 15-28 and most likely would need medication at some point. Just for the record below is my 2018 summary (July – Nov at least). The fact that I had 4 debilitating days in August and only took medicine 2 days… I can’t help but toot my own horn.
All that to say, I believe the traveling, new environments, new foods, etc might have contributed to my increased migraines this month… however, seeing that the severity of my migraines is still decreasing, I feel Aimovig is certainly been a more positive experience for me.
Week 1 • Nov 1 — 7
On the evening of the injections (140mg) as well as the next day I was extremely exhausted, found it difficult to drive the next day, and I took a nap in my car at lunch time. No amount of sleep felt restful. My mental fog was also extremely high and I worried if it was noticeable at work.
Day 3: was an intense fluctuation of pain. My scale of pain is measured on 0-4 (instead of 0-10) and this day it would go from 1 to 4 in a matter of seconds, going up and down drastically. It was mentally and physically exhausting.
I usually have sensitivity to smells or experience weird smells before/during/after a migraine, but this first week I kept smelling something very chemical-like.
Day 5: The electric shocks returned after not having them for 4 days. This was the first time I also experienced them in my body other than my head. Only one time in my right calf and once in my right shoulder. The pain shot up into my neck and head which started a headache and that stuck around and kept me awake most of the night.
Noticeable short pockets of relief ranging from 30 seconds to a few hours without pain.
Week 2 • Nov 8 — 14
Day 10: starting to feel a lot of occipital bone pain (aching, burning, deep) and electric shocks increased.
Overall though noticing a huge milestone with the amount of migraines I’m experiencing per week from 2-4 to 1-2. 🎉 Additionally, I seem to recover much faster than ever before.
I continue to experience a daily persistent headache, fluctuating blurred vision and the electric shocks in my head.
Week 3 • Nov 15 — 21 I spent day 15-19 with my best friend Lauren before meeting my husband to spend the Thanksgiving holiday with his side of the family. Lauren has been one of my main anchors of support this past year. She went above and beyond to provide a comfortable, stress-free oasis away from Los Angeles. It was heaven!
Day 15: travel day, had a direct flight. Migraine kicked up during boarding process due to a scent trigger. Luckily, the migraine itself wasn’t as bad as it could have been and only lasted 2 hours despite a crying baby on board.
Not sure if it was the airplane or what but my ears have been throbbing (and continue to ring, but that started in May) non-stop.
Day 17: all day migraine between a 2-3 pain scale that didn’t seem to break no matter what I did.
Day 19: travel day to the in-law’s home. Fairly low pain day. Migraine kicked up during the first flight but came back down during second flight.
Day 20 – 21: a migraine on both of these days set the tone of the rest of the week…
Week 4 • Nov 22 — 29
Day 22 through 25: I had a migraine every day with little to no relief, and extremely debilitating. It made me wonder if I was having multiple migraines or a long continuous one. 🤕🧠
Day 26: the day before must have broken some kind of cycle because while I still had a consistent daily headache I was able to function somewhat normally, and socialize with family. 🎉
Day 28: travel day back home, had a consistent headache
The intensity of the electric shocks has decreased however now experienced more shocks in my body this week (stomach, foot, legs).
My vision has been more debilitating this past week as well
Continue to wait, hope, and pray that the increased dosage helps. Especially curious if a more accurate assessment will come from December since I have no travel plans, and 2 weeks off of work at the end of the month. Looking forward to resting and being in pjs every day. As far as my treatment, I’d like to stay on this for another month maybe a total of 6 months before considering another CGRP or maybe even adding in another preventative on top of Aimovig. I have not decided how I feel about my new neurologist, but right now I do like his treatment over my past two doctors.
This post is not sponsored and all of these thoughts are my own.
Some of these side effects I dive into a little more in the weekly recap below. — Lightheaded — Dizzy — Decreased appetite — Irritated — Brain fog (no more than usual)
Week 1 — 10/01/18
Day 1 through 4: I felt dizzy and lightheaded first thing in the morning. Then I’d feel fine after a cup of coffee.
Day 4: my pain intensity started to fluctuate, a noticeable up and down shift in pain. It really felt like the drug was trying to work.
General brain fog. No more or less than usual, and I don’t have an articulate way to describe this it just felt different.
Week 2 — 10/08/18
Lower pain intensity but still experiencing just as many migraines.
Day 13: intense “electric shocks” began! The shocks located in my head, mostly on the left side. The pain would happen without any warning and with force, sometimes in the same spot but not always. Previously had an ice-pick feeling for the past 3 months that was fluctuating in intensity and frequency, once these “electric shocks” took over no more ice picks.
Week 3 — 10/15/18
I started asking around on Instagram about the electric shock feeling. Six individuals came back to me saying they also experienced these, two experiencing in the body/gut, and 4 telling me the pain disappeared after month 4.
The “electric shocks” have diminished a little bit in their intensity but have increase in their severity.
Week 4 — 10/22/18
Day 26: my daily headache started to decrease. Similar relief feeling that I get while during a migraine attack, and now the all day headache.
Week 5 — 10/30/18
Definitely have felt a decrease in pain severity but not in the frequency of my migraines. If anything I have felt this past week was the hardest and now I realize maybe it’s because the drug lasts about 28 days in your system. Don’t quote me on that though… it’s just something I’ve read multiple times on social media, and certainly felt I was ready for the next injection.
Started to notice my loss of appetite this week.
I was cautiously optimistic getting the Aimovig injection. My episodic migraines which I had since August 2016, became chronic in January 2018. I have been on six preventative medications prior to Aimovig, and with each prescription I experienced some of the worst side effects. So, my fear going from daily oral medication to monthly injections was quite scary. I wasn’t sure what type of side effects I might have to endure. With the “electric shocks” I started experiencing on day 13, I wasn’t sure if this was a side effect or another shift in how my migraines continue to change especially after a new drug is introduced. They freaked me out and my husband wanted to take me to the ER after seeing me wrestle with the excruciating pain. Suffice it to say, my neurologist seems to think this is Aimovig doing it’s job.
For month two my neurologist is increasing my dosage to 140mg. I am feeling a little nervous that the electric shocks will continue. I’m also excited and hopeful because so far my experience does seem mostly positive. ::fingers crossed::
This post is not sponsored and all of these thoughts are my own.