Having migraine as a part of everyday life goes a lot deeper than simply having head pain. In fact one of the most common misconceptions is that migraine is just a headache.

Those of us who live with chronic daily migraine often have to balance head pain that varies extensively along with other symptoms like nausea, brain fog, light and sound sensitivity, etc… For me, once my migraines reached a point where I wasn’t getting a break in symptoms, I often could have days where the head pain was really low or nonexistent but I’d still find myself overwhelmed with brain fog or easily disrupted by noises because the sound sensitivity persisted.

At this stage in my treatment, I’ve frankly run out of good new options to try that address actually reducing my migraine frequency, intensity, or duration and until new treatments emerge I will likely continue to be very disabled by migraine disease.

However, over the last year I’ve been fortunate to connect with some doctors who seem interested in more than just magically making me better, erasing migraine’s impact on my life fully and instead have offered suggestions that can improve my quality of life by addressing the other symptoms that come with migraine.

It was my former Headache Specialist who brought up Memantine as a medication I should take note of and consider.

In simply taking a stroll around Google and reading through various studies that have been done, Memantine – a drug indicated for use in slowing Alzheimer’s progression – has some indications that it positively helps migraines. There’s recent research that shows people have less migraine attacks, take less abortive medications, and have lower MIDAS scores after taking Memantine.

All of this makes it a candidate for giving the medication a try.

However, it was conversations overheard from friends that really sparked my interest in this medication.

One of my friends had been experimentally trying the medication with her doctor who had suggested it to help reduce some of the sensory sensitivities she experiences, and at some point she noticed it was in fact making a difference.

Other anecdotes I came across included reduced light sensitivity at about the one month mark and a huge reduction in brain fog after a few months.

Hearing from my friends what this medication actually does with our migraines was more useful information to help me decide I did in fact want to try it, which is why when I saw my new Neurologist in September and she brought it up on her own as something she thought I should consider I jumped at it, thrilled to give it a whirl.

We decided to start off at a low dose, with my Neurologist having concerns about one of the side effects being constipation and me having a rather sensitive stomach.

Dosing ranges between 5mg and 20mg – with a lot of people who are finding success with it as a migraine medication taking the 20mg dose.

I started at 5mg a day with the intent to increase to 10mg after a week.

Initially on the 5mg I did have some GI side effects but found that they were pretty manageable if I ate some prunes each night.

After a week, I increased to the 10mg and my GI side effects increased as well. I was being kept awake at night by stomach pain, was having mild constipation that was dramatically changing the schedule with which my body normally poops and I was very bloated. I also was experiencing a worsening in intensity in my migraines.

After another week, I chose to drop back down to the 5mg.

I decided that if I was going to see an improvement with the Memantine it would be okay to either have to wait longer for it to work or for it to be less of an impact because the trade off of constant stomach problems just isn’t worth it for me. You have to remember I’ve spent years since those awful migraine elimination diets working to fix my gut health and rebuild a healthy relationship with food, and to throw that all away and re-add stress to this area for a medication for side effects… again, just isn’t worth it.

Over this same time period, I was having improvement in my arthritis symptoms. I had experienced a flare over the summer that between a new supplement (Boswellia) and physical therapy had been well on it’s way to remission at the time I began the Memantine.

At this point, I was beginning to wonder how to really evaluate if the Memantine was working. Many people had noted it was taking a substantial amount of time to notice effects and that they were often discovering it in hindsight that they hadn’t been bothered by light in a few weeks. I decided my best bet was to pay attention to how I did during football games, since that was a consistent way to measure sound sensitivity. I don’t struggle too much with brain fog, at least not in a measurable way, so although some people reported this as an area of improvement it didn’t seem like a good benchmark for myself.

The length of football season however posed some concerns for how long I intended to trial the medication: four months. By the time I was evaluating success, football season would be over and I’d have no way to track sound sensitivity.

Thankfully, it was right around the start of week three, so early October that I noticed Memantine taking some effect (both good and bad).

The good: this was the first weekend where my benchmark for testing effectiveness was reached. I’ve spent much of the last few football seasons opting to watch games in silence or with the volume dramatically lowered because the noise feels like an audible assault, often regardless of what stage of a migraine attack I’m in. This has a huge impact on something I really enjoy, so I decided the best way to test out a medication that may help with sound sensitivity is to see if I’m still sensitive to my football games.

Since the 8th of October I have not experienced any sensitivity while watching football.

But, that same weekend I began noticing arthritis discomfort returning. I tried to monitor this over the next week, which coincided with our first winter storm. I know that my arthritis is more noticeable as the temperatures fall, so as the temperatures plummeted, I did not see any reason to believe my arthritis re-emerging was anything wrong.

Until the temperatures began to go back up, leaving no external factor to blame for the increasingly painful arthritis.

The arm pain also was paired with what I’ve come to identify as cervicogenic headaches caused by the arthritis in my neck.

This is a bruise like pain at the base of my skull that sometimes wraps a bit into my jaw, similar to TMJ induced headaches. This type of pain does not respond to migraine treatment. This type of pain heavily interferes with my ability to continue my physical therapy which is critical to improving my neck and shoulder strength and stability and keeping inflammation down to keep the arthritis from causing more damage.

This is the kind of pain I’ve previously been referring to as my autoimmune headaches. It’s the same pain I got on Aimovig, Nurtec, and Qulipta when those medications caused flares in my arthritis. I know now that this secondary headache has a name.

This secondary headache also has a treatment! I could request nerve blocks which would not only confirm the diagnosis, but clear up these symptoms.

This is where the bad comes in.

The bad: Just because I can treat cervicogenic headaches, doesn’t mean I shouldn’t be addressing the why for the emergence of this secondary headache. Secondary headache implies that it is being caused by a primary condition (in my case, it’s arthritis) and isn’t the primary issue. This of course can easily be complicated by and confused with the fact that I also have migraine disease which is a primary headache disorder.

Thankfully, my years of trialing other meds has taught me how to parse out the different pain and symptom presentations. This might not be as clear for others though, especially if an autoimmune disorder isn’t diagnosed or or misdiagnosed and the new head pain gets blamed on migraine.

I decided to look back through the side effects for Memantine, because from what I could tell I was having really good progress with my joint pain up until adding this medication into the mix.

Joint pain is a documented side effect, though not a common one.

This sent me on a search for people who may have experienced a re-emergence of previously controlled, or new, arthritis after starting Memantine. I came across only one patient forum where the gentleman’s wife began having joint pain and after discontinuing the Memantine the joint pain went away, with a few folks in the comments in agreeance of a similar experience.

Now I totally get that this is no where near resounding clinical evidence, but it got me asking some more questions as to why this particular side effect is not heavily documented.

Memantine is not a first line medication for migraine. It is clinically used for people who have Alzheimer’s which is an aging population.

In an already older population the likelihood of having arthritis and Alzheimer’s is larger, as is having joint pain that doesn’t fully respond to treatment, and that’s if treatment is even sought. Joint pain beginning and then worsening as people age is often viewed as just a part of aging.

So in theory it would make sense that the people who use Memantine the most are not going to report joint pain or worsening joint pain as a side effect even if they are experiencing it. And these patients also aren’t likely to discontinue the medication so the joint pain going away upon discontinuation also isn’t going to be noted.

These may be personal theories, but they make enough sense for me to at least try and see what happens after discontinuing Memantine myself. The worst case scenario is that my sound sensitivity would worsen and my arthritis would also continue to bother me.

I discontinued Memantine just over 5 weeks after beginning.

To set up expectations for when I could expect improvement in my side effects, I looked at the half life of the medication. When my joints hurt with Qulipta, I had almost immediate improvement upon stopping since that half life was 11 hours. Memantine’s half life falls between 60 and 80 hours, which is 3-4 days.

At about the 70 hour mark, my arthritis symptoms were improving and the pain at the base of my skull was down to zero.

This also coincided with another temperature plunge which helped to confirm that the joint pain was not being influenced by the weather, but rather the Memantine.

It’s been a little over a week and my symptoms continue to improve. I will likely never have total relief from arthritis symptoms – I’m still having some pain in my hand – but I’m able to tell the additional side effects I was struggling with are gone.

I also watched football again this weekend and didn’t find myself aggravated by the noise. Could it be the medicine still in my system? Maybe. But it’s also worth noting that just isolating pain and symptoms, days where football was on my pain was more intermittent when compared to a year ago where it fluctuated heavily between intermittent and borderline severe. So although I wasn’t feeling as if I was sensitive to the noise from the football games I can’t say with confidence I would have been bothered had I not been taking the medication at all.

Knowing this, I will not resume Memantine at a future date.

A.