A Caregiver’s Perspective – From One Caregiver to Another

The effects of migraines on sufferers ranges on a wide scale. They’d sometimes be in unfathomable agonizing pain, rendering them unable to carry out simple day-to-day tasks like even getting out of bed. At other times, the pain would be more bearable, but still a hindrance to one’s lifestyle.   Especially with an invisible illness like migraines, the disability to physically see the problem makes it harder to fully understand the pain the person is going through. 

As many of you are already aware, June is Migraine Awareness Month! We have previously featured many stories written by migraine sufferers, but today we are happy to share a different perspective with you. 

Over the past week, we have been collating responses from friends and family of migraine sufferers. Stepping up to take the role of a caregiver is definitely not an easy task. That is why we have requested for people to share their first-hand tips and expertise on how to care for someone when they are experiencing a migraine. 

The Effects of Migraines from a Caregiver’s Perspective

Based on the responses we received, 60% of caregivers mentioned that they were suffering from migraines themselves. The other 40% mentioned that they only truly understood about migraines after they saw their loved ones go through the pain. 

Some of the things they mentioned that they noticed about their loved ones when they are experiencing a migraine included mood changes, extreme fatigue, very irritable, inability to function properly/less active than before. Here are some of the other responses we received: 

• “They go quiet and have a crumpled face”

• “My son becomes very pale and lethargic, he often cries and screams in pain, regularly vomits, he becomes sensitive to light sounds and smells”

• “Typically a sequence of: Foggy-brained; incommunicative; stressed and/or unhappy; lethargic; eventually the need for pain/nausea meds + quiet + darkness + lying down”

• “Crankiness, short temper, eventually nausea, vomiting, extreme pain, crying”

• “They’re exhausted. Also sometimes I notice their prodrome before them (while they don’t)”

• “They are in pain, depressed, light sensitivity, low energy”

• “Unable to perform daily functions, having to go to sleep to find relief from migraines.”

  How to Care for Someone Experiencing a Migraine Attack

It is good to know some of the things you can do for your loved ones to help them feel more at ease. A simple task of getting up to get a glass of water could be very challenging for someone who is in the middle of a migraine attack. 

It’ll be best if you could help bring them anything they may need at that time, from their medication, an ice pack, water/snacks, or even just helping to draw the curtains and keeping the volume down would be a great help. Especially if your loved one experiences light or sound sensitivity, even the slightest noise or dimmest light may seem deafening or blinding. Sometimes, all they need is to be alone, so letting them know that you are there to help and provide emotional support is more than enough.

Here are some other tips the caregivers shared: 

• “As a sufferer myself, I try to make them feel as comfortable as possible. I will get the appropriate meds, an ice pack or a cool rag for their head and make sure all noise and light are blocked out from where they are.”

• Offer reassurance, provide water, medication and anything else they may require

• “Ask if I can help. Step back if I can’t. I leave them alone and I’m quiet so I don’t hurt their head.” 

• “Provide pressure relief to pressure points and comfort them by talking and support. Suggest going to the neurologist to find solutions and knowing to avoid their triggers. No bright lights or loud sounds.”

• “(A) ONLY ask necessary questions. (Typically, only those questions that fill in knowledge gaps on behalf of the caregiver). (B) *Depend on a decision tree!– By mutually defining limits for each phase of the sufferer’s migraine, a piece of paper on the wall can literally tell you the action that is needed at that time (provided you aren’t too stressed out to properly observe symptoms). Example: if the migraineur has pain and nausea, they need meds for each… If pain meds don’t stay down, take nausea meds. If those don’t stay down, use dissolvable nausea meds, then proceed with pain meds. If dissolvables are unsuccessful, time to (a) use a shot for pain and hope sleep is achievable, or (b) go to the walk-in clinic or hospital, and hope IV’s are possible.”

• “Ask them if they need anything, provide comfort, food, and love, give them a cold towel on their head and rub their neck”

• “Compression ice packs on the head, back rubs, mediation videos, sometimes putting on a movie or TV show in the background”

• “Everything from medicating, dressing/undressing, to bathing and putting them to bed”

From One Caregiver to Another

If you have never cared for someone with migraines or want to understand more about what migraineurs go through, here is some advice other caregivers mentioned. 

“Is there anything you wish you could let other caregivers

 understand about migraine sufferers?”

• “Be patient and respectful of the space needed to recover. I don’t pressure them to do family days out etc. There will always be another day”

• “Yes, the pain is real. This is not just something they can make up. It can come on suddenly without notice while other times you will have some forewarning. Take them seriously when they speak about them. Don’t blow them off like ‘can’t be that bad’, it is. Most importantly, have patience with them. Even if you have no idea what they are going through, be kind and mindful of what they are going through. No one chooses to have a migraine. It makes it 10 times worse when someone gets frustrated and annoyed and the sufferer tries to push through only to be punished later with the worsening symptoms.”

• “Migraine is a serious medical condition and should not be taken lightly. Try to comfort and be understanding of those who suffer from migraines.”

• “A migraineurs’ decision making skills are not sharp during an attack – and your help is essential. Resist the frustration associated with lagging communication, and use a decision tree.” 

• “Sometimes people with migraines don’t want attention, they just want to be alone.”

• “The migraines can vary every time, and the symptoms in young children look like other illnesses”

• “It is a serious condition and make people unable to work. Sufferers cannot control when they appear, empathy is greatly needed”

• “It’s not just a headache”

• “As a migraine caregiver, you’re not alone and the recipient is thankful.”

Our best advice for caregivers would be to have patience. Be patient with your loved one and try to understand that this isn’t something that they chose either. If you want to take the extra step, in your free time you could try to read up about anything related to migraines. Most importantly, caring is curing. Giving them love, encouragement and any form of support is key. 

Words of Encouragement

We understand that everyone who suffers from migraines is having their own tough journey but remember you are never alone in this fight! To conclude, we wanted to include some words of encouragement for the fighters who battle migraines everyday:

• “You are not alone. Your family cares, but may not know how to help. Ask for help if you need it. Friends and family will feel useful if it is just for an ice pack or even a glass of water. “

• “You are not alone! Take heart in knowing you are not alone and other people fully understand what you are going through and are advocating on your behalf. Please reach out to someone, don’t suffer in silence.”

• “You are not alone, value the pain free/low pain days. Remain hopeful!”

• “Stay strong, don’t give up on trying to find your triggers!”

• “Take things one day at a time. At this very moment, you’re at a specific point in a process – Help your caregiver understand where you’re at in that process, and they can take if from there (…for this round).”

• “Inform people that you have a migraine if you want to be alone. Silence and darkness definitely helps. ❤️”

• “Be open minded about finding relief (exercise and hydration to prevent migraines etc.) You will have periods of time where you don’t get migraines, try to find the differences between those migraine-free periods and those when you have migraines, and implement them. 

• Say nice things to yourself…be kind to yourself 

• I know how frustrating and debilitating it can be. Keep pushing and doing your best and stay healthy and positive! 

• They always go away at some point. Don’t let them control your life. 

• “You can get through it, we will get through this” 

We’ve compiled a short list of the essentials to formulate a ‘Caregiver’s Toolkit’ for you to better help your loved ones during a migraine!

We would like to thank everyone who sent in their responses! 

Wishing everyone a migraine-free day ahead! ?