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12 May 2016

Treatment Protocols: How They Make ER Visits Easier

Yesterday, +Migraine Again posted an article that I wrote about how my migraine treatment protocol makes trips to the ER easier.  I wanted to share that article with my readers who don't follow me on Facebook or Twitter.  I hope that this opens up a conversation between you and your doctor about creating a protocol that would help you receive the best care when treating your severe pain in an emergency room or urgent care setting.  You can read the article and get more information about when to go to the emergency room with a Migraine.




You can also read my original draft below.



Most migraineurs have had to deal with the unpleasantness of the emergency room.  When prescribed abortive and/or rescue medications fail to get rid of the migraine, many of us wind up in our local ER’s or urgent care centers (When Should You Go to the ER with a Migraine?).  Instead of going and getting taken care of like we expect to be, many migraineurs face judgment from the medical staff and are often treated as drug-seekers.  Some of us may end up going to the ER or urgent care a couple of times in one month if a migraine episode will not ease up for more than a day or two.  That does not mean that we are looking for a high.  I have failed to meet any migraineur who enjoys how painkillers and narcotics feel.  All one in that much pain is looking for is relief.


Due to this common treatment, a lot of us choose to tough it out at home instead of dealing with the glares, questions, and inadequate treatment.  For migraineurs like myself who are allergic to or cannot tolerate triptans and most anti-inflammatories, opiates are our only option.  In my experience, most doctors frown upon administering any form of opiate or narcotic and if they do, will only give you one dose. And that is only if the Toradol, Phenergan or Zofran for nausea, and possibly Benadryl you were given first didn’t work at all.  It is an all too frustrating situation to be in when you are bombarded with severe pain, nausea, and horrible photo- and phonophobia.

I can’t count how many times I have suffered in silence at home because that was less of a burden than dealing with how I may be treated in the ER or urgent care.  When I would go, I would be given the bare minimum and sent home still in pain.  It wasn’t until I began seeing posts in support groups about migraineurs having a treatment protocol from their neurologist or headache specialist that I actually considered having one.  My neurologist of over ten years never mentioned having one and I figured that with one, I may get the actual care I need.  Back in December, I was in my ER waiting room for six hours waiting to be seen.  The lights, sounds and smells were keeping my migraine at a 10 on the pain scale.  All I could do was just sit there and cry.  It was ridiculous how my pain was not seen as emergent or important enough.

There was a light at the end of that long, dreary wait when I was seen by a compassionate doctor who offered up some new things to try.  I typically would just get IV toradol, phenergan, and one (or two if I’m lucky) dose of dilaudid.  She added IV magnesium, Benadryl, and a steroid (Decadron) to my traditional cocktail of medications.  My migraine was raging so it took four doses of dilaudid to bring it down to my baseline of a 2 on the pain scale.  Once I got home I immediately faxed my doctor my ER visit summary with what I was given and asked that he type up a treatment protocol with those specific medications and doses for whenever I need to go to the ER or urgent care.  While I was at it, I also had him type up a protocol for needing inpatient care in order to break a status migrainous with the use of DHE infusion (which usually takes from 2-4 days).


I keep all of my protocols, medications, and visit history
in my binder.  This book of information allows me to get
the treatment I need right away.
Now that I have my treatment protocols, I am no longer questioned or treated inadequately.  I keep a binder that has my protocols, list of medications and allergies, past visit summaries, and upcoming appointments.  It goes with me every time I go to my local urgent care, who has the same capabilities as an ER with a much cheaper copay.  I just hand the doctor my protocol and with no questions asked, I’m given exactly what is on that sheet of paper.  It is such a wonderful feeling knowing that I am in charge of my care.  There is never a time when you do not have to advocate for yourself.  If you know what works and what doesn’t when you have to go to the ER, have your doctor put together a treatment protocol for you.  It makes a world of difference in how well your migraine is treated in those situations.  If it’s coming from the horse’s mouth, who are they to question it, right?

7 comments :

  1. I have a 17 year old son that suffers from chronic migraines, he has missed a great deal of school because of them. It seems like all the doctors want to do is say he is faking or just try to throw a bunch of narcotics at him. I dont want him addicted to pain killers, we recently went to the ER as he woke up from a dead sleep screaming from the pain we went to our ER and the first question out of the nurses mouth was "how many times have you been in seeking medication", I was furious then the doctor came in and gave him an IV as he had been throwing up. After a couple of hours from the benedryl they put in IV he woke up and felt a little better. They told me that he had a tension headache. I don't understand why the dr didn't even look at him no CAT scan, no examination just assume he is drug seeking and throw an IV in him. I don't want to give him drugs we have been trying diet and exercise and chiropractic what other resources do I have out there to help me figure out how to stop these headaches as I hate seeing my son suffer

    ReplyDelete
    Replies
    1. Hi Candis. I am sorry to hear about how your son has been treated by doctors in the ER. And I understand your concern about narcotics. Has he ever tried any of the triptan class migraine abortives? They were first introduced in the late 1980's (Imitrex was the first drug put on the market). There are several brands and types, i.e. dissolvable tablest, injection, nasal spray.

      Another option is to try to find a headache specialist in your area to take your son to. You can use this link to search for one.
      https://www.mychronicmigraine.com/find-chronic-migraine-specialist

      Lastly, have your son keep a headache journal/diary. You can find them online in a printable format and there are some apps that your son can put onto his smartphone if he has one. My favorite and one that I use all of the time is the Migraine Buddy app. It's available in the iTunes store and on Google Play. It is very important to keep track of triggers, whether they be environmental, synthetic, food, stress, lack of sleep, caffeine consumption, and even exercise. Narrowing down triggers really helps in the management and prevention of migraine.

      I wish you and your son the best of luck. If there is anything else that I can help you with, please do not hesitate to contact me. My email address is livingmigrainebrain@gmail.com.

      Take Care and Stay Well,
      Jaime M. Sanders

      Delete
    2. I found a better list of certified headache doctors for you to refer to. Please use this one instead.

      https://migraineresearchfoundation.org/resources/find-a-doctor/doctors-certified-in-headache-medicine/

      All the best,
      Jaime

      Delete
  2. Thank you for sharing your story, it really sheds light on the importance of documentation and preparedness. You've certainly found an efficient and proper way to advocate for yourself. Do you still experience long wait times now that you are going directly to Urgent Care with your binder and avoiding the emergency room?

    ReplyDelete
    Replies
    1. Hi Leonardo,

      I have Kaiser Permanente as my health insurance and they have their own medical centers and urgent care centers. All I have to do is call and make an appointment and I'm usually seen within 15 minutes of arriving. They also take walk-ins but I prefer having the appointment because I will be seen sooner. It is also much cheaper going to urgent care as opposed to the emergency room. My copay is $20 rather than $50.

      Take Care and Stay Well,
      Jaime M. Sanders

      Delete
  3. I can relate to this experience! I have struggled with migraines for quite some time myself and developed a similar protocol for when they are really bad. I haven't had to go to the ER yet thankfully, but can see how that translates as well. I appreciate your openness and willingness to share.

    ReplyDelete

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