Louise's story

Hi everyone,

I’ve 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.

  1. Keep moving!
    I know it’s difficult. Some days it isn’t possible. Even some weeks it isn’t possible…but it is so important to keep moving. 3 years into my journey, I was diagnosed with “Vestibular migraine-associated vertigo with physical deconditioning”. The key part here is “physical deconditioning”. If you stop doing your usual tasks, it’s going to make you worse in the long run. I didn’t 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 I’m 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. It’s difficult to make yourself ill to make yourself better, but it’s worth it.

  2. 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 “I can’t do that”. I now see them and think “I can’t wait to do that” or “it might be difficult but I’m going to try it”. It’s so difficult when you’re anxious about doing certain activities through the fear of being ill. She’s given me tools to stop anxious thoughts before they consume me and lead to a flare up

  3. 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 pizza…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! Don’t cut out food that you love and make yourself miserable… 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

  4. Meds:
    Finding the right meds is a huge factor and everyone’s experience will be different. Just don’t be afraid to re-try medicines. When I first started with VM, I expected to be cured by meds, so if they weren’t curing me 100% I tried a different one. I’m 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

  5. 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 that’s 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

  6. Make your life easier:
    Get a dishwasher so you don’t have to stand at the sink to wash dishes. Get a kitchen stool so you don’t have to stand up while cooking. Get a shower stool or bath board if you struggle to stand in the shower. Just don’t become reliant on them. Use them when you feel that you need to, but try to stand up first

  7. 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 it’s going to be for the rest of my life. For the last year I’ve been taking back control of my body. I now refuse to let VM dictate 100% of my life, my husband’s life and my son’s 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.

  8. Remember that whatever stage you’re at, there is a light at the end of the tunnel. It probably won’t be a 100% cure, but you can improve when you’re ready. I was ready to make changes because I could reflect on my symptoms and triggers. If you’re not there yet, don’t worry, keep doing the best you can, but don’t lose hope :heart:

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Hi Louise! :smiling_face_with_three_hearts:

I love your approach to life! I completely concur that you shouldn’t 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 you’re obviously smart because you rest up and I should take note of that more often!

Seriously, your post made me smile :sparkling_heart:

Shower stool - Amazon check list! :ballot_box_with_check:

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Aww I’m so glad it made you smile :relaxed:

I was just reading your exchange with Kirsty on another thread and thought I’d read your post! I’m sorry I somehow missed it the first time around, it hits all the right notes for me! :blush: 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 ‘success stories’ and I like it when they are realistic. To be honest I feel like I’ve only really seen men report 100% cures on this thread, but I could be wrong.

Anyway, lovely post and great advice, thank you!

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I really like your suggestions. I actually printed them out and hung them on my fridge!

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Yep, Helen & I were talking about that the other day. Put aside for a moment the frequency of ‘getting better’ 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!

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Personally I think it has to do with our hormones and cycles…

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I’m so glad you like the post and hope the tips help you a bit :slightly_smiling_face:

Oh wow that’s amazing!!! :grin::grin::grin: That really made me smile :smiling_face_with_three_hearts:

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I agree, I was cured during pregnancy and breastfeeding then it came straight back. Very odd, definitely hormone related in my opinion!

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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! :relaxed: 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

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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 who’ve suffered so much carrying a baby. I am sorry you’ve had to deal with such tragedy. You’ve a wonderful time ahead I am sure :sparkling_heart:

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:heart_eyes: thank you. I’m so excited (when not distracted by dizziness) :joy:

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I’m 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 I’ve 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, don’t stand up unless the baby needs it. Sit down to cook tea, make bottles, shower, wash dishes etc

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Is that your worst symptom Springer? Or do you suffer a lot more? Xx

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You’ve 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

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Yes I’ve 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 we’ll manage, but all that is good advice. Im conscious that if I don’t force myself to do little walks despite being dizzy and not wanting to do it, then it’ll be worse in the long run, so its finding that balance. Its reassuring that you’re 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 we’ll be done after this :smiling_face_with_three_hearts:

I’ve 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 haven’t done true aerobic exercise in like 5 years. I think there’s provably underlying CFS. But to be honest, my symptoms wax and wane and I have substantial days of feeling normal, as long as I don’t overdo it. I never wanted to go down the drug route (or it just hasn’t been bad enough), so Im always trying to understand more what’s 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 (I’ve 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! I’m 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 didn’t want to add a trigger so I had a wrap instead :sob::joy:

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That’s brilliant, it sounds like you’ve thought of everything! Tbh it was really bad at the time and I needed a lot of help, but I’ve learnt a lot since then. We’re only considering another child now that my son starts school in September, I couldn’t manage 2 under 5 at all. We’ve been discussing all of the things which we’d 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, I’ll breastfeed in hospital for convenience then bottle feed from the second we get home! Absolutely buy a Perfect Prep machine if you haven’t considered it already!

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