Intractable Migraine and Me
Last updated: September 2022
There isn't any one concrete reason why I can become intractable. Weather, changes in barometric pressure, fatigue, insomnia, or a reaction to a new medication could all be culprits. Sometimes, an attack just never lets up and lingers for days, weeks, and even months. I have been in the same cycle since August 2018. This one was brought on by the new anti-CGRP drug Aimovig. I did not respond well at all to the injections, and they gradually made the migraine attack more severe and less responsive to treatments.
Limiting my abortive treatments
Per my headache specialist, I am limited to using any abortive medications to three times a week. This is to prevent medication overuse headache. My first line of treatment is Midrin. If that fails, then I move on to oral Toradol and Thorazine.
Supplementing with homeopathic treatments
Since I am limited on how often I can use these medications, I supplement their use with homeopathic treatments. Organic muscle rubs, essential oils, magnesium oil, precision tinted glasses, herbal teas, ginger, earplugs, ice packs, moist heat and massage are also utilized. If I have an intractable migraine, that means that my normal treatments at home have not been successful in aborting the attack.
After going through my first and second-line treatments without success, the next step is to take three days of dexamethasone. Dexamethasone is a steroid that is often prescribed to break an intractable migraine. In order to prevent trips to urgent care, my headache specialist prescribed it for me to take at home in the event of a migraine attack that would not go away. Unfortunately, I have not had much success with the oral steroids as with the IV steroids given in urgent care.
Urgent care or emergency room
When steps one and two are exhausted, the next step for me is to go to urgent care. In the past, I would dread going because there was no way of knowing if my migraine would be treated. A few years ago, my neurologist at the time and I came up with a treatment protocol for use in urgent care or the emergency room. When we found the right combination of medications, it was put on letterhead with a brief description of my medical history and signed by my physician.
Treated as a drug seeker in the ER
Going to the urgent care or ER brings anxiety because a lot of the time we are treated as drug seekers or we are under-treated for our pain. This piece of paper helps me to advocate for myself when I'm in too much pain and distress.
What's in my protocol? Most of the basics that you find in any migraine "cocktail" are administered in my protocol, including:
- Magnesium sulfate
Usually, a trip to urgent care will stop the migraine and end the cycle. In the event that doesn't happen, the next step would be DHE infusions. Infusions of dihydroergotamine take between 3-5 days and require me to stay inpatient at my local hospital. This is where my love-hate relationship with dihydroergotamine, or DHE, comes in. Getting the infusions almost always works in stopping the intractable cycle, which I am grateful for. What I do not enjoy are the side effects, prolonged hospital stays, and time spent away from my family.
How does dihydroergotamine work?
DHE is an ergot medicine which is used to treat a migraine or cluster attack that has already begun. It works by narrowing the blood vessels around the brain. DHE does not prevent migraine or headaches or reduce the number of attacks. Whenever I have an intractable migraine or status migrainosus (a migraine attack that has lasted longer than three days), it is common for me to get DHE infusions.
My DHE infusion protocol
As with my urgent care/ER protocol, I also have a treatment protocol written up for DHE infusions. To lessen the side effects of nausea and/or vomiting and diarrhea, the DHE is mixed into a bag of normal saline. The DHE drip is started at a rate of 25 ccs per hour. The drip rate is increased by 5 ccs every hour until a maximum infusion rate of 40 is reached. At this rate, it usually takes 24 hours to infuse the whole bag. This will continue for up to five days until I reach my baseline of two on the pain scale. The drip will then be titrated down by 10 ccs every two hours until I am off of the drip.
Other medications and tests
To ensure that the migraine is being treated aggressively, other medications are also added. For three days, I am on around the clock Toradol and Thorazine and receive one dose of Solu-Medrol (a steroid) daily for five days. For nausea, Compazine or ondansetron are given. To prevent blood clots, I am also given a daily dose of Lovenox. Dihydroergotamine affects the blood vessels in the entire body and not just the brain. Blood pressure must be monitored routinely as well as heart rate. I had a heart monitor hooked up to me the entire time. EKGs were also done during my stay.
The trouble with the hospital
Sleep is hard to come by when you're in the hospital. Between the constant vital checks, blood draws, the beeping of machines, and administration of medications I got naps more than actual sleep. I was encouraged to walk around the floor a few times a day to prevent blood clots. DHE tires you out, but I made an effort to get a few laps in twice a day if the pain wasn't too bad. During my last stay, the prolonged use of the DHE plus how long I was in pain caused my blood pressure to be really high. At one point, I had to be given medication to lower it, and my diet was switched to a sodium-restricted one.
Waiting to go home
For four out of the five days in the hospital, my pain would not go below a four. I was sure that it was not going to reach my baseline of two. Miraculously, at the end of day four, it hit a two and stayed there. I was beyond ready to leave and finish recovering in the comfort of my own home. To take a shower and put on clean pajamas was heavenly. My body was exhausted and the smallest task made me very tired. The next two days were spent catching up on sleep.
Dealing with intractable migraine
The migraine is still here and I do not know when or if it will go away. If things start to progress and worsen, I will just go through my steps again. It is an ongoing process, one that may repeat itself a few times a year. This is what having chronic intractable migraine looks like for me. I wish it wasn't my normal, but it is. Here's hoping one day a new normal comes my way.
Do you have a migraine toolbox for when an attack hits?
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