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Intractable Migraine and Me

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.

Abortive treatment for migraine

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.

Homeopathic treatments for migraines

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.

Dexamethasone

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 which 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.

Migraine stigma

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.

Migraine cocktail

What’s in my protocol? Most of the basics that you find any migraine “cocktail” are administered in my protocol including:

  • Toradol
  • Phenergan
  • Benadryl
  • Decadron
  • Magnesium sulfate
  • Saline

DHE infusions

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.

Dihydroergotamine

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.

DHE 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 effects 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. EKG’s were also done during my stay.

Trying to sleep in 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • powermom
    2 months ago

    I believe that your diet may be the culprit in your recu headaches. I recommended joining the National Headache Foundation and ask for their migraine diet.
    I follow it religiously—-especially when dining out. I ask the waiter to find out ALL of the ingredients in a particular dish.
    I also get Botox injections every three months and these two “ interventions have finally allowed me to live a “ normal” life!

  • Karen
    2 months ago

    Hi Jaime.
    I’s sorry about the intractable migraine. I get them frequently and they are beasts.
    Can I ask though how you are able to find Midrin anymore to use as your first-line abortive? I also used it for over 20 years with 100% success. It never didn’t work. Now the intractable migraines since it seems they’ve stopped making Midrin and all its generics and related meds. I’d be so grateful if you could let me know how you are able to still find it. Thanks. Prayers for your Aimovig-caused migraine to stop. I too had to stop it as it made my migraines worse as well. Had such high hopes for the CGRP meds. Big disappointment. Tried Emgality next and no improvement.
    But if I could find a way to get Midrin again that would be a lifesaver for me!

  • Jaime Sanders moderator author
    2 months ago

    Hi Karen,

    Unfortunately, I’m not able to get Midrin anymore either and it has been the only thing that has helped me in a very long time. So, I’m in the same boat.

    All the best,
    Jaime

  • chels
    2 months ago

    Thank you for sharing. I just took my 2nd does of Aimovig and have my first intractable migraine. My nero told me to go to the ER. This will be my first trip. My usuall regimen is not working.

  • tea3
    2 months ago

    Thank you so much for sharing. This gives me a few new ideas. Thank you.

  • RHgriggs
    2 months ago

    I’m surprised that your doctor still requires DHE to be done inpatient. Since 2012 I’ve been able to get DHE by IV at Outpatient Infusion or at home administered by Home Health Care…I haven’t had to be hospitalized for DHE since 2010.

  • glassmind
    2 months ago

    What an ordeal! Thank you for sharing. May you have many level 2 days in your future.

  • amandaotaylor
    2 months ago

    This is very very similar to my own account of migraine. Almost to the same medications and the order of the meds. I just finished my 3 days of infusions but I go to a outpatient clinic for mine. Do they have that option for you so that you don’t have to be in the hospital the whole time? Im praying my DHE did the job this time. Now I just have to take it easy and be careful the next few days. A lot of times I get a spurt of “oh I feel better” and totally over due it and then go through it all over again. Hope your doing better.

  • Jaime Sanders moderator author
    2 months ago

    Hi Amanda!

    I’m going to have the conversation with my headache specialist next week about the possibility of having the infusions done in an outpatient infusion center. I hope your migraine does break after this current round of treatment you had. And I completely get over doing it when you start to feel better. I have to remind myself to take it easy too or I’ll wind up back where I started.

    Hugs,
    Jaime

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