Way back in February of 2019 I did a post on my Instagram titled 'What to do if you have vestibular migraine?' I had quite a lot of messages about the post, and one thing became clear - that many people feel really alone in living with vestibular migraine. It's so wonderful that social media has such a supportive community for people with chronic illness, but having support of friends and family is so important too.
It's easy to see why those close to you may not understand vestibular migraine too well. After all, many doctors (in my experience) know relatively little of the condition, and I don't know anyone else 'in real life' with it. I've had the comment 'oh so headaches then?' so many times when I say I have the condition, when many people don't have head pain at all with vestibular migraine (although some of us, like myself, have both classic and vestibular migraine).
I truly believe that support is a major aspect of managing vestibular migraine. Feeling understood and as though people are 'on your team' makes a huge difference in practical terms and in dealing with all the emotions that come with a chronic condition. That's not to say that talking about medical conditions comes easily to all of us. I used to feel embarrassed and try to hide my symptoms. A frank conversation about symptoms, treatments and lifestyle changes though can go a long way, and lead to further conversations on the seven areas of support I suggest below. I hope that you find them helpful!
This post is for informational purposes only, and does not constitute medical advice in any way. If you feel that you may have vestibular migraine, it is important to see a neuro-otologist or other doctor that specialises in treating the condition.
- Support during attacks and the need for rest
- At the onset of an attack or during high symptom periods
- The need for rest
- Help with managing triggers
- When out with friends and family
- At home
- Personal care
- Encouragement and support
- Vestibular rehabilitation therapy (VRT)
- Researching migraine and vestibular migraine
- Some related posts you may like to check out:
Support during attacks and the need for rest
Explaining vestibular migraine as a condition, its symptoms and your treatments is likely the first step in gaining support and encouragement from your loved ones. It's often difficult for someone to understand a health condition, particularly if they don't live with a chronic illness themselves. As well as talking through it yourself, there are also some suggestions for further resources in the section below.
At the onset of an attack or during high symptom periods
- Explain to friends and family what happens during attacks or periods of high symptoms and what you need from them during that time, which will be different for each of us. If an attack comes on out of the house then you may want to suggest that you need to go home, or to a quieter place. I suffered in silence a few times, and it made me feel even worse.
- Each of us are different during attacks as to whether we prefer to be alone or with those closest to us. Personally I prefer to be alone, so I ask for some peace and quiet and retreat to the bedroom.
- Ask your friend or family member to get you anything that may ease symptoms, whether it is medications, a headache and migraine relief hat or ice towel if you also have head pain, food and drink or a hot water bottle if it makes you feel better.
- If you feel nauseous then nausea relief bands such as the Blisslets bands may be helpful - and are so cute too! (Blisslets kindly offers a 15% discount with the code fibrofog). Get someone to pass them to you!
The need for rest
Rest is really important for most people with chronic conditions, and migraine is no exception. Migraine attacks can be emotionally and physically draining, and we need time to recuperate. And doing too much activity can trigger an attack itself, so balancing rest with activity is so important.
- Emphasise the need for rest time, especially when symptoms are flaring and explain why it is important for you. I know some people experience a little resistance from partners or family members on this, so a frank conversation on your needs may have to be had, emphasising that you will feel better overall if you aren't on-the-go all the time and have some periods when you can recharge.
- Sorting out your sleep! When you live with migraine sleep is all-important, and as my doctor always says, the migraine brain likes a schedule - a roughly the same bedtime and wake-up time each day. Disruption to this schedule can be a trigger, and is why many people end up with a migraine attack on the weekends as they stay up late and sleep late too. If you have a bed partner either ask them to stick to a bedtime and wake-up time with you, or be as quiet as a mouse when getting up or coming to bed if you have different times! Have a look at the Migraine Trust website for a great review of sleep hygiene.
Help with managing triggers
Triggers are individual but can include lack of sleep, weather changes, flickering lights or movement, travel and so much more. It can take a minute to work out what your triggers are, and attacks may come on 'just because' with no identifiable trigger. Asking friends and family to make some adjustments can go a long way to reducing attacks of dizziness and other symptoms. Some of my suggestions:
When out with friends and family
- Ask for friends and family not to wear perfume or aftershave if that is a trigger for you. This was a big one for me, and I did get a touch of resistance from one family member, but she is now perfume-free when we are together and it helps so much. Same with perfumed candles, air fresheners etc . . .
- When driving with others, relegate (nicely!) your friends and family to the backseat of the car and sit up front if that works better for you.
- And while we are on travel, I plan journeys ahead of time and if I'm not the one driving then I ask to go a flatter route (if I know of one) rather than down winding country lanes or over a ton of speed bumps. Less jolting of my head is always a good thing!
- If there are kids in your family, or your friends have little ones, then consider meeting somewhere they can let off steam and run around without it being a trigger for you. Having my nieces run around my home, going up and down the room over and over again makes my head spin. So now we go for a walk or to the park (or they go in the garden if the weather is warm enough) and then back to mine once they are nicely worn out and will happily sit and read a book or play with puzzles.
- In restaurants and cafes for get-togethers and celebrations ask to sit on a table around the edge of the room or in a quiet corner rather than right in the middle with people walking back or forth next to you. And avoid being next to the counter or kitchen if it is open-plan so noise levels are lower too. Nothing like the sound of china plates being stacked to set off my head . . .
- Do you have a family member who loves to scroll through ads on recorded TV shows really fast like I have? Those flickering images get me every time so ask for that remote to be left well alone!
- Work together to switch up home decor if it bothers you. Regular blinds had to go in my home as they set my migraine off badly. So now it is curtains and my dizzy head is much happier!
- Also on decor, if you have trouble with your balance due to vestibular migraine consider switching out any thick-pile rugs for something less 'bouncy'. I found them really difficult and still walk around them in other people's homes to I don't have to stand on them!
- And one more on decor, those ceiling fans that whir around? I'm guessing they would need to go for most people with vestibular migraine.
- Decorations look cute during Christmas and the holidays, but anything that flashes, shimmers or moves around (like hanging decorations) is a no for me. So we stick to a simple tree with no flickering lights and a wreath or two instead.
- If you have issues with light sensitivity then trying out some blue light blocking glasses such as Migraine Shields may be helpful, particularly if you are on the computer, watching TV or from bright sunlight. Migraine Shields kindly offers 20% off with the code throughthefibro
Encouragement and support
Encouragement and support is so important when you live with chronic illness. It is easy to feel alone or a bit lost when trying to deal with symptoms, appointments, physiotherapy and so much more all by yourself. Having a partner, family member or friend being part of your overall support system makes a huge difference.
Vestibular rehabilitation therapy (VRT)
- Unless your doctor recommends a good VRT therapist, it can be tricky to know who is the best choice for you. Ask your partner or family to help you research who would make a good fit. Get them to look over the websites of therapists to research their qualifications and experience.
- If you like company to get to and from appointments, or feel you need the support during travel due to symptoms, ask for someone to go with you.
- VRT can be so helpful for many with vestibular migraine, but we all know that doing physio exercises can get a bit tiresome after a while. This is when friends and family can step in! Encouragement is so useful when it comes to being motivated to stick with your exercises. Get them to be your own personal cheerleader for doing your VRT exercises, maybe even plan a little treat if you do well at keeping to the plan set by your therapist.
Researching migraine and vestibular migraine
- I know this feels like giving someone homework, but I really believe that asking family to read up on your condition is really helpful. I gave my family a few migraine websites to look over such as The Migraine Trust, so they could understand my symptoms, treatments and lifestyle changes better. It was really worth the ask.
- As a proud Ambassador for VEDA (Vestibular Disorders Association) I couldn't not mention this great organisation! VEDA was the first website I found when I was diagnosed with vestibular migraine and it was so helpful, and still is. It's a mine of information and I used to feel as though I was having a lightbulb moment when I recognised a symptom or feeling that felt so strange, but was down to the condition. Get your loved ones to check it out!
- Reading up with helpful books is also a great idea. Bookmark sections or chapters that you think would be particularly helpful in explaining symptoms, treatments or lifestyle changes, or take an hour to read a bit together. Some books that you may find particularly helpful:
There are a number of supplements that are discussed by The Migraine Trust as helpful for managing migraine and have evidence for acting as a preventative treatment. Always speak with a doctor before taking new supplements. Three key supplements* are:
How can you partner or family member help you out with supplements? Well, in three ways:
- Add your supplements to your usual Amazon order, or to your shopping list for items you buy at the store (this will probably only need to be once a month). Make it part of your usual shopping so you don't run out!
- Encouragement to remember to take them! Take your supplements together if they also take meds or natural treatments or just get them to give you a gentle reminder if they don't.
- Have your supplements (and meds if you take them) somewhere in your home that will make you more likely to take them. For me this is my bathroom shelf, for others it's in the kitchen to take with breakfast. Wherever works for you!
Exercise can be really beneficial for vestibular migraine, but needs to be undertaken in consultation with your doctor or VRT therapist so you don't end up making symptoms worse rather than better. The Migraine Trust has a great page on exercise, including why it may have been a trigger for you.
- If you are advised to exercise, then rope your loved ones in to help you out. Get them to come for walks if that's the type of exercise that works best for you, or go to a gentle yoga class (or via a YouTube video such as Yoga with Adrienne). It's much harder to miss an exercise session if you have company and encouragement from someone else, and way more fun to go for a walk and have a good catch-up while you're out!
- Get them to gift you exercise equipment! Personally, I began to get back into exercise by using a pedal exerciser. For both vestibular migraine and my dysautonomia, this was recommended by my physio as you stay seated and pedal. So only your legs are moving and not your head, which was something I couldn't tolerate when my symptoms were at their worst. Other options are a yoga mat, new sneakers or some fun workout clothes to give you a bit of extra motivation.
Hope this gives you some ideas for how your family and friends can help you out if you live with vestibular migraine.
Some related posts you may like to check out:
*always check with a medical professional before taking a new supplement
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Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.