there. are ways to spot signs you are having an HAE attack

Home > Accessing Care > Recognising attack triggers and signs

Attacks of HAE can occur suddenly and without warning1,2 But if you have been symptomatic for a while, you may already have noticed some of the early-stage signs that warn you an attack is about to happen. Some people notice these signs minutes or even hours before an attack, while others can feel them a whole day or two before a full attack begins.3

You might also hear people talk about the early signs of an HAE attack as the “prodrome” or “prodromal symptoms”.

Whatever stage of your life you are at, it is important to become familiar with what can trigger your HAE and the early signs of an attack so you can be prepared if one occurs. These steps should help you prepare:

  1. Recognise your triggers: these may be events, medication changes or situations that lead up to an HAE attack.
  2. Avoid triggers: where you can, avoid possible triggers. Some, you may not be able to avoid (like dental work or cesarean delivery during childbirth), in which case talk to your doctor about how to prepare.
  3. Recognise signs of an attack and be prepared: in some cases, an attack may not be avoided, so learn the signs that an HAE attack may be starting and keep your medicine close by, in case you need it.

Recognising your own early-stage signs can help you stay in better control of your condition, as well as being aware of signs that it may be developing into a more serious attack.

What if my attacks have no obvious trigger?

For some people, there is no obvious trigger or sign of an attack.1 If that is true for you, there are some steps you can take to prepare for attacks when they happen:

  • Educate family, friends and co-workers about your condition.
  • Before you travel, locate the nearest A&E department.
  • Discuss your medical condition and dental work options with both your HAE specialist and your dentist, especially if you are considering extractions or other dental work.
  • Keep a diagnosis letter with you at all times.

Should your signs be disabling and/or prevent you from completing everyday activities such as tasks for work, socialising or household chores then you should have a treatment plan agreed with your HAE care team.

Common signs of an HAE attack may include3:

Sudden mood changes Sudden mood changes
Rash Rash
Irritability Irritability
Aggressiveness Aggressiveness
Anxiety Anxiety
Extreme fatigue Extreme fatigue
Tingling sensation A tingling sensation of the skin where the swelling will begin

We have created an infographic to help you recognise an upcoming attack and identify your potential triggers. You can find it by clicking here

Some HAE attacks can be extremely serious

The following symptoms can indicate a serious situation that may require immediate emergency medical attention4:

  • Throat swelling that blocks the airway, prevents normal breathing and is therefore life-threatening
  • Intestinal swelling can cause intense, abdominal pain that can progress to vomiting and diarrhoea

Find out more about being treated for HAE in hospital

Keeping a record of your symptoms, treatment used, and possible triggers might help you to identify the early signs of an attack. Download a copy of Your Berinert Diary to help keep track.

REFERENCES

  1. Lumry W et al. J Infus Nurs 2020; 43(3): 134–145
  2. Bygum A et al. Front Med 2017; 4: 212
  3. All about HAE. All about the symptoms of HAE. [Last accessed January 2023]
  4. Longhurst HJ, et al. Clin Exp Immunol. 2015; 180(3): 475–483