Heads Up, Written Down
Episode 20: Navigating the ER During a Migraine Attack
with Lindsay Weitzel, PhD and Jill Dehlin, RN
As people who experience migraine, cluster, and other headache disorders, we do everything we can to avoid the emergency room. However, there are times an ER visit cannot be helped. This week on Episode 20 of Heads UP: The Weekly Podcast of the National Headache Foundation, I spoke with Jill Dehlin, RN, a Certified Health Education Specialist. This episode outlined numerous tips for navigating the ER, from when to go, to how to address any stigma you might encounter once you are there. Having this type of information helps us feel more empowered when we have exhausted all other resources and are seeking emergency department care.
The best way to avoid the ER is to work with your physician to come up with an emergency migraine attack plan to help keep even the worst episodes from becoming so severe that we need to seek help from the emergency department. Everyone’s plan will look different. But it is good to have a plan from your doctor in writing. In Episode 16 of Heads UP: Status Migrainosus, Dr. Martin mentioned even preparing an “emergency kit” with everything you need to help you take care of yourself at home during your most severe attacks.
Possibly one of the most important things to know is when it is time to go to the ER. In Jill Dehlin’s words: “Most people with migraine know their symptoms, it is when something is NOT typical that you may need to head to the emergency department”. Specific problems she listed include: fever, weakness, visual changes, confusion, or dehydration from nausea and vomiting.” Other specific problems that could present that you would likely need to be evaluated for include stiff neck with a fever, sudden onset thunderclap pain, or worst head pain of your life.
There are a couple of things you should get from your physician ahead of time. Not all physicians have privileges in all hospitals so ask your doctor which hospital to go to. Also, get a written set of instructions from your doctor to give to the staff in the event that you have to go to the emergency department. This will make the visit much easier on both you and the staff.
If you know you are in a pain flare and there is a good chance you may have to head to the ER, you may want to have a “go bag” ready because you likely will not be thinking straight if you are forced to head to the hospital.
Things you may want to include in your “go bag” are:
- written list of symptoms, particularly any new symptoms.
- letter from your doctor verifying your condition and the care you need
- written account of your medical history including surgeries, allergies and adverse reactions to medications
- insurance card and identification
- list of regular medications plus any medications that have or have not worked in the past
- list of any other medications you’ve taken in the last 48 hours
If you are lucky enough to have someone in your life to act as your advocate, bring them with you. It is very difficult to advocate for yourself once you are at your sickest. Also, bring everything you will need in case there is a long wait. This will include the regular medications you take. Bring food and drink if you are able to keep them down, sunglasses to avoid the glaring lights, and possibly earplugs to protect you from the hospital noise. Some people benefit from having a scarf to keep around their face for smells. If heat or ice are beneficial for you bring them. Also, bring any of your regular remedies for nausea.
One very important question we discussed if whether you should take opiates for your migraine attack if they are offered to you in the ER. Opiates or narcotics should be used as a last resort when nothing else has worked. In people with migraine, these drugs could cause disease progression. Research shows that these drugs can make us more sensitive to pain and may even lower our ability to respond to triptans.
Stigma in the emergency department is reported as one of the main reasons people with migraine do not go to the hospital even once symptoms of severe dehydration etc. have occurred. Jill addressed this question very well in this episode. Migraine cannot be seen in a test and people are “skeptical”. Health care professionals still do not receive good training on migraine and other invisible pain disorders. It is an unfortunate truth that there are people who claim invisible illness to seek drugs. Hospital staff are not well educated on this dilemma. There will be great experiences and not so great experiences in the emergency department. But the difficult experiences may not hurt so bad if we know where the stigma comes from.