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:

6 Likes

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:

1 Like

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