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Aimovig

Aimovig Update: Fourth and Final Review

February 2, 2019

Preface

I would like to acknowledge that the CGRP drug is a really great step in migraine treatment. I love hearing stories of others experiencing positive results from CGRP and I hope that it continues to help many, many more. I also wish I had been one of those lucky enough to reap the benefits.

This goes without saying that previous drugs I’ve tried up to this point have been unsuccessful or had negative side effects — the difference is that CGRP is such a new drug with minimal information out there. It is not my intention for this to sound negative or anti-Aimovig. I merely feel called to share my experience, and while it seems it’s a small percentage of most patients’ there are others who have confirmed having some or all of the same side effects that I did.

My hope is that readers find this information helpful, weigh the pros + cons and educate themselves. As we know — no two migrainuers are the same, and neither are their experience with treatment plans.

Injection Info

Injection Date: 12/27/18
Dosage: (2) 70mg = 140mg
Month Four: 11/29/18 — 12/27/18

Side Effects + Thoughts

My side effects are not currently acknowledged by Amegn or the FDA.

I felt semi-positive entering my 4th month on Aimovig because I read various Reddit and Instagram comments that the 4th month was the “sweet spot”, where others saw their electric shocks disappear and found themselves having fewer migraines. I was hopeful but hesitant.

Unfortunately for me, on top of all the side effects I had been experiencing since the 1st month, I began to develop new more troubling side effects.

  • Shortness of breath ⁣
  • Heart beat bursts, feeling was like a triple heart beat to a regular one beat (happened several times per week)
  • Nausea and lightheadedness
  • Sharp pain in my chest that felt like a bruise (would last for several minutes to all day)
  • Tingling nerve pains in my back, feet and face.
  • Constant muscle aches⁣ in my shoulder, hips, hamstrings, and feet
  • Electric shocks in my head and body. These started to subsided a little bit but picked back up at the end of the month.
  • Insomnia
  • Anxiety
  • Major loss of appetite

Initially, I had some low-pain days sprinkled in at the beginning of each month, but was met with alternative pain and symptoms. Some so debilitating that I couldn’t work or drive.

Also, as with the previous months, my migraine attacks felt shorter at times but I also noticed that my triptans were becoming less effective. The amount of migraines I experienced per month was still at 15+/month.

Resources that helped inform my decision

I was on the fence to continue Aimovig into month 5 but the heart issues were the most concerning for me. My previous neurologist was honest that he was not familiar with Aimovig and I was his first patient taking it. My newest neurologist was very persistent that she had never heard of any side effects aside from the constipation and injection site irritation reported in the trails.

This article was very informative in learning exactly how CGRP works with your body. “The following are presented as a series of questions related to core systems (eg, cardiovascular, central nervous, gastrointestinal, reproductive, and more) that need to be addressed before CGRP antagonists are used widely. Most of these questions do not have answers at this time.”

I also mention how I found Aimovig reviews on Drugs.com and the CGRP Reddit migraine group to be especially helpful.


Others talking about their Aimovig experience

Natalie of Mindful Migraine talks about her Aimovig Experience Recap with such beauty and grace. She discusses her expectations and while she didn’t have any side effects ultimately the drug wasn’t helping her. I love how she also included quotes from others experiencing positive results!

Erica of Achy Smile also is sharing her month-to-month Aimovig Recaps, and is the one who inspired me to have a similar format here.

This post is not sponsored and all of these thoughts are my own.

Aimovig, Migraine

Aimovig Update: Month Three

January 8, 2019

Injection Info

Injection Date: 11/29/18
Dosage: (2) 70mg = 140mg
Month Three: 11/29/18 — 12/27/18

Side Effects

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)

Thoughts

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.

Weekly Recap

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.

Next up

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.

Aimovig, Migraine

Aimovig Update: Month Two

December 1, 2018

Did you miss the first month recap? Check it out here.

Injection Info

Injection Date: 11/01/18
Dosage: (2) 70mg = 140mg
Month Two: 11/01/18 — 11/29/18

Side Effects

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

Thoughts

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.

Weekly Recap

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

Next up

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.

Aimovig, Migraine

Aimovig Update: Month One

November 1, 2018

I found it helpful to read other blogs about their Aimovig experience and felt inclined to add mine as well.

Injection Info

Injection Date: 10/01/18
Dosage: (1) 70mg
Month One: 10/01/18 — 10/31/18

Side Effects

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)

Weekly Recap

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.

General Thoughts

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.

Next up

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.