Migraine Treatment Experience: High Dose Indomethacin
The day I found out I was going to try indomethacin for my Migraine disease changed my life.
Indomethacin is a potent NSAID with powerful anti-inflammatory capabilities. Unfortunately it also comes with a very scary set of potential side effects. Scary enough that most non-pediatric physicians outside of the Migraine and headache world will rarely if ever consider using it. Indomethacin is not a very popular drug.
The day I was prescribed indomethacin was one of the first appointments I had with my very first Migraine and headache specialist. I was asked about other medicines I had tried, and after the interview it was suggested I try it “just in case”. But, not in the normal fashion.
The doctor tried to make the process sound more glamorous by calling them *rectal rockets* and it did make me laugh, but the truth of the matter is that I was desperate, and if using suppositories that made me think of the Apollo missions to the moon would help me, then I’d make whatever allowances I needed to get over the idea that I was taking my meds in reverse. The idea was that we could bypass my gastric stasis and the resultant vomiting and maybe I might see some improvement.
You see, indomethacin is a drug that is often used to rule out other headache disorders, and is one of the first things that should be tried on chronic Migraineurs who aren’t responding to other treatments very well. It is also often used when patients can’t take triptans and ergotamines — a personal issue of mine.
Now, leave it to me to once again require a medicine that was so unpopular that it was discontinued in the US in the form I needed it. This meant a quick trip to the local compounding pharmacy where hubs walked out with a bag containing maybe 24 rockets and a box of finger cots.
If you don’t know what a finger cot is, you’re missing out. Imagine taking a rubber glove and cutting off all the fingers. You toss the glove, then roll up the fingers individually, putting them in a small box and charge as much for each as for a full glove. I briefly considered drawing eyes and smiley faces on them before packing them away for my next Migraine.
I didn’t have long to wait.
I think self-injecting it would have been easier than taking that first dose backwards. But I did it, and it helped me. A lot.
For the first time in a very long time, I had hope that this might work. Nothing else had worked for a very long time. Hope was what I needed and my whole attitude changed.
Since that day so long ago, I have used too many rockets to begin to count. Indomethacin is now my treatment of choice. Lucky for me, this is an NSAID that doesn’t *normally* cause MOH, and I can use it daily so long as I don’t mix it with other meds that can cause MOH. Not only has it made me a semi-functioning human being again, but it has kept me there for a good handful of years.
It did bring with it a host of problems.
I began to bruise terribly. One day I woke up and the inside of one whole leg was a giant purple-red bruise that looked like a wine stain. The next day the other leg looked like its twin, and I began to bruise on my arms, torso and back. I got a black eye too. I went to the hospital for a blood draw, and spontaneously started leaking copious amounts that splashed to the floor in a puddle while I hollered for a nurse to come and help me quell the flow as I grabbed the inside of my elbow and tried to shut things down.
My neurologist forgot to keep an eye on my kidneys, and when I asked him about it, we tested them to find that they had reduced function to a scary level where it unfortunately remains today, so long as I take my meds as prescribed.
To make matters worse, my eosinophils (immune cells that can cause organ damage) were high, alarming both my doc and the hematologist I was sent to check me for cancer. Fortunately I also was checked for B12 levels, a deficiency was found and supplementation was helping my head, so I was able to reduce my dosage from a fairly whopping 300- 375 mgs daily to only half of that. When I did that, my eosinophils went down and the bruising became manageable.
After that my basophils (more immune cells usually associated with allergic reactions) went high. This is not usually mentioned as a potential side effect, but it appears to be for me, as they re-balance when I take less of, or stop my meds.
My stomach has its issues with my indomethacin, and it is a constant battle to keep things copacetic. I have LPR (high reflux) and the indomethacin makes that virtually untreatable. I have pain. Eating and drinking is not usually pleasant, but a task. Thankfully I have low acid in my stomach, so we are keeping an eye out for Barrett’s esophagus (a precancerous condition resulting from prolonged reflux) and so far so good. If I have to give up the indomethacin, I’m really not sure how I’d make out.
Cognition can be a problem, and I am tired most of the time. But these things I can deal with and are an easy trade-off for the benefits I’m getting from this med.
Indomethacin is a drug that is not well understood. It is very similar to the brain hormone melatonin. Certain headache disorders are considered 100% indomethacin responsive. This means that all symptoms go away with the right dose of the drug.
I am not 100% indomethacin responsive as is typical for patients. It takes the edge down enough that I have learned to manage the pain that is left. I am told that sometimes Migraine takes on the symptoms of other headache disorders. In my case my symptoms resemble cluster headache (sometimes responsive to melatonin) and hemicrania continua (an indomethacin responsive disorder) as well as Migraine. So we don’t really understand the details of how it is helping me, however it is enough for me that I found something that probably saved my life all those years ago.
The worst drawback is the effects to my kidneys which have been damaged previously by autoimmunity. Migraine specialists talk amongst themselves about patients who rarely need even higher doses than mine, eventually needing kidney transplants. As an autoimmune patient it is unlikely I will ever qualify for a transplant, so staying at the bare minimum dosage to keep me comfortable is important.
Oh yes… and my tip for the day. The smartest thing I ever did was to switch to regular exam gloves instead of those pesky finger cots. *Wink*
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