Lara’s Story of Learning to Travel with Vestibular Neuritis, Migraine, and pppd
Where It All Began
I was hit suddenly with my first vestibular condition back in early 2010 turning my world literally upside down.
Unfortunately what proceeded was 2 long years of going back and forth to Drs and consultants to get a concrete diagnosis. I was eventually diagnosed with Vestibular Migraine in October 2012. Vestibular Migraines were triggered after the birth of my twin girls in 2009. Life got even tougher when I was diagnosed with my 2nd and 3rd vestibular conditions! Vestibular Neuritis in 2013 then PPPD in 2018. The Neuritis was caused by repeated viral attacks and too many antibiotics which damaged my delicate inner ear nerves. I went from a happy, carefree, and life-loving person to a very depressed, anxious, and dizzy mess.
Having vestibular conditions is debilitating. The symptoms they cause engulf your daily life, limiting your ability to do the simplest of activities eg unloading the dishwasher, vacuuming and general cleaning, cinema/theatre trips, going swimming and other exercises, walking and travelling by car, plane, train, and boat… everything felt challenging for years.
My world was getting smaller so I made some changes
During the first 2 years of seeking a diagnosis, I felt I was limited with where I could go and how far. I was so scared that travelling would make me worse. I did go on a couple of long car journeys and even those put me in a spin and I would have to rest up for days after. Even short car journeys of 30 minutes resulted in me having to rest for an hour after to stabilize and compensate. I went on a plane in early 2012 which was 4 hours long, I felt dreadful after and remember resting in the room until things leveled out. Back then I didn’t really have a ‘toolkit’ as such, not like I have now! So I was not equipped with the tools and knowledge to help me get through it as well as I have now.
Then once I had my first diagnosis of Vestibular Migraines I knew what I was dealing with. I suppose knowing what I had and having researched into it a lot gave me the confidence to try more travelling and what would be, would be. At the time I felt like I could not get much worse than I was, so I might as well try! So each year I would go on a trip to Greece or Lanzarote as it was 4 hours long and I felt I could just about get through that. However, longer flights were a definite no no. I remember my husband wanting to go further afield each year but I kept saying no, as I knew that a longer flight would possibly relapse me further in my chronic state. It was bad enough with a 4-hour trip.
When my 2nd condition came long, Vestibular Neuritis (nerve damage), once again my world was turned even more upside down. All my symptoms got 10 times worse. I never thought it was possible to feel even more dizzy! My vertigo got severe. I was often having drop attacks to the floor and I was getting more headaches too. I had already been battling with severe anxiety but then came the panic disorder after an incident on the M25 whilst driving. Despite all this and how I was feeling, there was no way I was going to limit myself anymore. No way I was not going on holiday with my family. So I decided that I would carry on going abroad but still limit myself to 4-hour flight time as I had mastered the resting and recovery time on the other side!
I started to research what I could have in my survival kit when flying and travelling. I bought a pair of Earplanes which are pressure filtering earplugs – a godsend! I also had with me Bach Rescue Remedy which I would take before and after the flight for anxiety. I do not mind the flying itself, I quite enjoy being on a plane, but it’s the dizziness and my other vestibular symptoms that cause anxiety and panic. I also had something in my survival kit that made me happy (I had a photo of my daughters, see photo) it made me laugh. Sunglasses were a must as airports are bright and I also had isolating ear plugs for when I went to restaurants abroad or noisy places as my noise sensitivity was so bad back then. Headache pills are also a must for sure.
Lifestyle changes improved my symptoms
Fast forward a few years and I started to look at other parts of my life, my diet, my exercise, and my mindset. In 2015 I started walking more, 2016 I looked at my diet and went gluten and dairy free. I had already given up alcohol in 2013 and caffeine soon after. All this started to make such a difference to me. I embarked on a daily program of meditation back in 2014 but since then have really worked on my mindset and introduced tools like EFT tapping, grounding, body scans, and using nature as one of my biggest healers. Also increasing movement and exercising helped me mentally and I felt my anxiety and depression lifting as the years went on.
Finally, come 2019 I felt it was time for me to come off my medication and try and self-manage using my newfound personal treatment plan of exercise, diet, and mindset healing. For the last few years I have been working hard at getting better and now feel I am in a good place with my vestibular conditions. So much so that I started getting bolder and braver and venturing further afield! In 2020 my husband once again suggested a trip to a long-haul destination… this time I said YES! However, what we didn’t know was that Covid was just around the corner so we had to cancel those plans that year. Instead, we decided to rebook for 2022.
Time to put my brave pants on
The flight time to South Africa is 11 hours from the UK, then we had an internal 2.5-hour flight after the long flight from Johannesburg to Port Elizabeth. I could not believe I had agreed to this huge trip in the first place. However, I knew I was in a better place with my vestibular conditions and my mindset was so much better. Instead of working myself up into an anxious mess before the flight/holiday, I was actually excited! I couldn’t believe the difference in me. Yes, I still have GAD (general anxiety disorder) and panic disorder but because my vestibular conditions are not chronic anymore the anxiety and panic do not kick in as much now.
The day of the flight came. It was a nighttime flight so I felt that was going to be a bit easier, as I was hoping to sleep. Unfortunately, I didn’t sleep much at all! I was so worried about this as lack of sleep can really kick off my symptoms. However, amazingly, I was not too bad after. I used my toolkit on the flight like I always had done for shorter flights. In total on that holiday I flew 27 hours in the air and I travelled 10 hours in total in the car. We went to countless restaurants, zoos, and lots of places. I amazed myself on that trip, yes there were things I could not do eg I won’t go on boats still and I won’t do zip lines or cable cars, but I did a lot of other things I could never have done before. I even walked on my own for an hour along the coast and drove the hired car for an hour!!
A new lease of life
That trip released a new me, a braver more confident me, a glimmer of what I used to be like. I have been practicing my driving, only a few miles each day, but it’s something. Considering I have not driven properly for 9 years, this is a huge step for me. I have also been going to the cinema, going to restaurants, etc. I even suggested a trip to Italy back in May on a plane again! What has got into me?! I wanted to take my husband to Italy for our anniversary, as a treat. We had an amazing time.
We are off to Greece on a holiday soon and later on this year we hope to go to Croatia. I definitely have got the travelling bug again and I can tell you I would never have thought I would have said that ever again in my life! I don’t know what has got into me but I love it.
You Are in Control and What You Seek is Already Within You
It has taken a lot of hard work and commitment for me to get to where I am today. The biggest change was when I really focused on my mindset healing, meditation/mindfulness, and using exercise to release tension and reduce anxiety and depression. I do believe the more you move the better you feel. Since the long haul holiday, I have done so many things: paddle boarding, driving more, window cleaning (sounds so simple but I could never have looked up high at windows before!), gardening more, cleaning the house more, walking more, exercising more… so many things I could never have done before.
We truly are amazing humans and so many look for external treatments to help or even cure them when actually what we seek is already within us. You can do so much yourself to improve your symptoms and heal. You also have to believe and trust your mind and body and have more faith in them. So many people say to me that their brains are untrainable. That is simply not true. We can do amazing things and achieve so much if we put our mind to it.
I would be more than happy to chat with anyone with a vestibular condition thinking about travelling or going on holiday. We are all so different in how we react to travel but hopefully this post has helped give people hope and inspiration that you can travel with a vestibular condition. I went from not being able to walk across my lounge without the aid of a walking stick to now being able to go on long-haul holidays and other activities. Not to mention, whilst on holiday, doing lots of activities and trips that I once thought were not possible. There is hope.
Tips for Travelling
- Plan ahead and make sure you have your own personalized toolkit with you.
- Yes, physical tools are great to have but do not forget the mental tools too. I LOVE EFT tapping, it’s got me out of some really sticky situations, and reduced anxiety and panic attacks. You can also learn breathing techniques, grounding, body scans, etc.
- Keep hydrated, flying, and travelling, in general, is exhausting for us vestibular sufferers. Yes, it means more trips to the loo but I would rather that than increased dizziness due to dehydration.
- Make sure the people you travel with know of your conditions and your limitations, also what to do when you have an attack. There is nothing worse than having to hide what you have. I even tell the flight stewards about my conditions it makes me feel far less anxious on the flight. I make it very simple (“I can get very dizzy when travelling” because let’s face it, you cannot explain a vestibular condition quickly!)
- Make sure you eat well prior to, during, and after travelling. I find grazing on food much better as it keeps my blood sugars stable and keeps my dizziness at bay. Take snacks with you as it will be easier than trying to find snacks whilst travelling.
- Remember to get a doctor’s note for any prescription medication you have, some airlines/countries require it. Keep the medication in its original packaging with the prescription label on.
- I email the hotels way in advance before I get there, requesting ground floor rooms as I know I cannot do some of the small lifts you get in Greece, etc…and also lots of flights of stairs is not great for me.
- Factor in ‘rest time’ after your travelling day…so important we rest after travel. But equally don’t lie in bed for ages, move about in-between rest times…to keep you compensated. I get worse if I lie in bed for long periods of time after travelling so it’s definitely a fine balance.
By Lara Bishop of
You can find Lara on Instagram, Facebook, at mummyseeingdouble.com, or in her Facebook support group.