Hemiplegic Migraine ER Protocol Letter: What to Include

A hemiplegic migraine emergency room (ER) protocol letter is a vital document created by your neurologist to guide ER staff when you experience a severe attack. Because symptoms of hemiplegic migraine closely mimic an acute ischemic stroke ^[1], the letter must clearly state your diagnosis, provide your neurologist’s contact information, explain that your symptoms are fully reversible ^[2], explicitly warn against using tPA (clot busters) or triptans ^[1], and outline an approved treatment plan such as IV magnesium ^[3].

Essential Components of an ER Protocol Letter

To advocate for yourself effectively during a medical emergency, ensure your neurologist includes the following elements in your letter:

• Official Documentation: The letter must be printed on official clinic or hospital letterhead and physically signed by your neurologist ^[3]. ER staff will not accept a document you typed yourself or an unsigned note.
• Your Specific Diagnosis: The letter must clearly state whether you have Familial Hemiplegic Migraine (FHM) or Sporadic Hemiplegic Migraine (SHM) ^[4]. It should also list your typical baseline aura symptoms, such as transient motor weakness (temporary muscle weakness or paralysis), visual changes, or speech disturbances ^[5]. This helps ER doctors recognize that your symptoms belong to your typical migraine presentation ^[6].
• Emergency Contact Information: It is critical to include the direct phone number, after-hours number, and pager number of the treating neurologist who diagnosed you ^[3]. ER physicians may need to consult them quickly to coordinate your care and verify your history.
• A Clear Stroke Mimic Warning: The document should emphasize that while your transient unilateral motor weakness mimics a stroke, it is a fully reversible aura symptom ^[2].
• Explicit Contraindications (What NOT to Give):
  • No tPA (clot-busting drugs): Because you are not having a stroke, tPA will not help you and unnecessarily exposes you to severe risks, such as bleeding in the brain. Giving tPA to a patient with hemiplegic migraine is inappropriate and risky, especially given the complex brain blood flow changes that occur during an attack ^[7].
  • No Triptans or Ergotamines: These standard migraine medications are strictly contraindicated for hemiplegic migraine ^[1]. They cause vasoconstriction (narrowing of blood vessels), which is dangerous during a hemiplegic attack.
• A Plan to Stop the Attack (Acute Abortive Plan): The letter must provide explicit instructions on what medications should be given to stop the attack. A common standard is intravenous (IV) magnesium, which acts on specific brain receptors to help halt the abnormal electrical activity that causes the aura ^[3]. Other approved treatments might include IV fluids, IV valproate sodium, IV anti-nausea medications, or specific non-steroidal pain relievers (NSAIDs) as determined by your neurologist ^[8].

What to Expect in the ER

Because hemiplegic migraine is rare, many ER doctors may not be familiar with treating it. Their primary medical training teaches them that sudden paralysis is a stroke until proven otherwise. Arriving with a formalized, written emergency protocol ^[3] helps bridge this knowledge gap. It shifts the ER staff’s focus to safely treating your migraine.

However, even with a perfect letter, hospitals may still be required to activate a “Stroke Code” when you arrive with paralysis. ERs must often perform rapid brain imaging (like a CT or MRI scan) to definitively rule out a stroke, as having hemiplegic migraine does not make you immune to actual strokes ^[7]. Preparing for a fast-paced, high-stress intake process—and consenting to necessary imaging—can help reduce anxiety during an attack.

Logistics: Making the Letter Work for You

During a hemiplegic attack, you may be physically paralyzed or unable to speak, making it impossible to hand a letter to a triage nurse. Plan ahead to ensure your protocol is used:

• Carry Multiple Copies: Keep signed copies of the letter in your wallet, your car, and at your workplace.
• Inform Emergency Contacts: Ensure your trusted family members, friends, or roommates have copies of the letter and know to present it to EMS or ER staff immediately.
• Use Medical IDs: Set up the medical ID on your smartphone to note your diagnosis and mention the ER letter in your wallet.
• Pre-Register at Your Local Hospital: If possible, ask your neurologist to place the letter in your electronic medical record at the hospital you are most likely to visit.