Iāve had VM for 6 and a half years so thought it might be useful to share some tips with people, especially those who have been diagnosed recently.
Keep moving!
I know itās difficult. Some days it isnāt possible. Even some weeks it isnāt possibleā¦but it is so important to keep moving. 3 years into my journey, I was diagnosed with āVestibular migraine-associated vertigo with physical deconditioningā. The key part here is āphysical deconditioningā. If you stop doing your usual tasks, itās going to make you worse in the long run. I didnāt truly understand what this meant until I started seeing a neuro-physiotherapist last summer. This time last year, I could only manage to leave the house once a week and was very dependent on other people to take me places. Now Iām leaving the house 3 times a week and gradually increasing it to 4 times. Think baby steps: one tiny step at a time in the right direction is better than no steps at all. Itās difficult to make yourself ill to make yourself better, but itās worth it.
Get your head in the right mindset:
I have also been seeing a neuro-psychologist. She is focusing on psychological triggers which contribute to daily dizziness: namely stress and anxiety. I became fearful of the calendar, seeing events or tasks and thinking immediately āI canāt do thatā. I now see them and think āI canāt wait to do thatā or āit might be difficult but Iām going to try itā. Itās so difficult when youāre anxious about doing certain activities through the fear of being ill. Sheās given me tools to stop anxious thoughts before they consume me and lead to a flare up
Food and drink:
2 years ago I noticed that i had a flare-up every Friday. When I thought about it, I realised that we get a takeaway every Thursday with a big pizzaā¦which has lots of cheese on. I swapped to a wrap and onion rings and it made a huge difference. Trialling one food at a time is key, use an app like My Fitness Pal if necessary, but be kind to yourself! Donāt cut out food that you love and make yourself miserableā¦ swap it!
I have decaf coffee instead of caffeinated. I have cream cheese instead of cheddar. I have white chocolate (made with cocoa butter) instead of milk chocolate (made from cocoa beans which is the issue). I have green apples instead of bananas etc
Meds:
Finding the right meds is a huge factor and everyoneās experience will be different. Just donāt be afraid to re-try medicines. When I first started with VM, I expected to be cured by meds, so if they werenāt curing me 100% I tried a different one. Iām now back on old meds and am doing much better, probably 60% better with my latest combination (propranolol, amitriptyline and the mini pill), alongside physio
Plan, plan, plan:
Plan when to be well and plan when to be ill. My weeks look like this at the moment:
Monday: Go out
Tuesday: Stay home and rest
Wednesday: Go out
Thursday: Stay home and rest
Friday: Go out
Saturday: Stay home and rest
Sunday: Stay home and rest
*When I have flare ups, the plan goes out of the window and thatās ok. But this approach has allowed me to live a semi-normal life. It encourages me to leave the house and makes my illness improve by doing so
Make your life easier:
Get a dishwasher so you donāt have to stand at the sink to wash dishes. Get a kitchen stool so you donāt have to stand up while cooking. Get a shower stool or bath board if you struggle to stand in the shower. Just donāt become reliant on them. Use them when you feel that you need to, but try to stand up first
Remember that you are more than your illness:
I spent years being consumed by my illness, I let it take over my life. I resigned myself to the fact that this is how itās going to be for the rest of my life. For the last year Iāve been taking back control of my body. I now refuse to let VM dictate 100% of my life, my husbandās life and my sonās life. It took a very long time to get to this stage so I totally appreciate that a lot of people will still be figuring things out, before they can make changes.
Remember that whatever stage youāre at, there is a light at the end of the tunnel. It probably wonāt be a 100% cure, but you can improve when youāre ready. I was ready to make changes because I could reflect on my symptoms and triggers. If youāre not there yet, donāt worry, keep doing the best you can, but donāt lose hope
I love your approach to life! I completely concur that you shouldnāt have to let MAV control your life, it will limit it at times but with the right help people can get there.
Thank you for sharing such a positive and realistic way of life for a person with this illness. You make some valid points and youāre obviously smart because you rest up and I should take note of that more often!
I was just reading your exchange with Kirsty on another thread and thought Iād read your post! Iām sorry I somehow missed it the first time around, it hits all the right notes for me! I think its so important to keep coming back to the idea of not giving up. When I have really bad days i come on the thread and search for āsuccess storiesā and I like it when they are realistic. To be honest I feel like Iāve only really seen men report 100% cures on this thread, but I could be wrong.
Yep, Helen & I were talking about that the other day. Put aside for a moment the frequency of āgetting betterā and just consider the fact that there is definitely a bias of more women with this condition in the first place? Or do women just feel more comfortable than men discussing stuff on public forums?
I would run a poll to confirm the split. Shame we live in a world where I have to hesitate about how to phrase that poll and what options to include!
I keep hearing this. I bet its got a lot to do with my recurrent miscarriages too. How I longed to have a break for pregnancy! I am expecting my daughter via surrogate in a couple of months, so am preparing myself to ask for substantial help as I expect to be really hit by the effects of sleep deprivation
Wow Springer, that is absolutely amazing news!!! You must be so excited and what a fantastic idea! Very well thought out. Surrogacy would be ideal for women with MAV whoāve suffered so much carrying a baby. I am sorry youāve had to deal with such tragedy. Youāve a wonderful time ahead I am sure
Iām so sorry to hear about your miscarriages, that must be so difficult for you. Congratulations on the surrogacy though! The sleep deprivation does make things difficult, I did struggle when I had my son, but 4 years on and Iāve learnt a lot since then so am thinking of having another. Basically the main thing for me is to make sure that the triggers you can control (food, drink, hormones, psychological factors etc) are managed really strictly. Also try to make things as easy as possible for yourself, donāt stand up unless the baby needs it. Sit down to cook tea, make bottles, shower, wash dishes etc
Youāve totally got this MAV thing in check Louise, I wish I was as self controlled as you are. You make some really good points in terms of living with this. Are you managing in the heat ok? Xx
Yes Iāve already started with blanket ban on alcohol and sticking to my keto regime, as well as asking for very specific support (meal drops, cleaner, occasional night nanny). My husband is a bit of a gem and prepared to take the bulk of night feeds. So far I think weāll manage, but all that is good advice. Im conscious that if I donāt force myself to do little walks despite being dizzy and not wanting to do it, then itāll be worse in the long run, so its finding that balance. Its reassuring that youāre thinking about another! So cant have been too bad! For us its been hard enough (and expensive enough) to have this one, so I think weāll be done after this
Iāve experienced the whole fabulous bouquet of symptoms but the main ones that are constant to some extent or other are visual vertigo, motion sensitivity (including travel sickness) and just feeling like my balance is off. I have struggled with fatigue and exercise intolerance for a long time, and especially since Covid. I havenāt done true aerobic exercise in like 5 years. I think thereās provably underlying CFS. But to be honest, my symptoms wax and wane and I have substantial days of feeling normal, as long as I donāt overdo it. I never wanted to go down the drug route (or it just hasnāt been bad enough), so Im always trying to understand more whatās happening and look for natural solutions. So far, the keto diet has been the best for me, but I know I have to be careful of histamine, like most of us. Stress and anxiety have a huge part to play in all this too, and my symptoms have been notably worse since the stress of the pandemic totally disrupted my sleep back in 2020 (Iāve never really gone back to an easy full nights sleep since). My symptoms also always fluctuate in relation to my cycle. On a good month I will only feel weird the day before my period starts. Right now im on day 79 of a cycle (no explanation!) and been feeling dizzy for 2 weeks as my period has been trying to get going. Im taking progesterone now to try to bring it on, as advised by my endocrinologist
Aww thanks, it took a very long time to get to this stage but I now have noticeable flare-ups 4 times a week which last 2 hours each, instead of feeling dreadful 24/7! Iām doing ok in the heat thanks, just resting as much as I can and making sure my other triggers are controlled. I really wanted a takeaway pizza last night but didnāt want to add a trigger so I had a wrap instead
Thatās brilliant, it sounds like youāve thought of everything! Tbh it was really bad at the time and I needed a lot of help, but Iāve learnt a lot since then. Weāre only considering another child now that my son starts school in September, I couldnāt manage 2 under 5 at all. Weāve been discussing all of the things which weād do differently next time, to make life easier! Your husband helping with feeds will be amazing! I breast-fed my son for 3 months and it was the worst decision ever. He had to feed every 3 hours because he dropped a lot of weight in the first week, and it was all on me. If we have another, Iāll breastfeed in hospital for convenience then bottle feed from the second we get home! Absolutely buy a Perfect Prep machine if you havenāt considered it already!
I think its so important to keep coming back to the idea of not giving up. When I have really bad days i come on the thread and search for āsuccess storiesā and I like it when they are realistic. To be honest I feel like Iāve only really seen men report 100% cures on this thread, but I could be wrong.
thank you. Iām so excited (when not distracted by dizziness) 
