**TRIGGER WARNING** – this blog discusses past suicidal feelings, depression, anxiety, PTSD and panic disorder. Some images I share may also be a trigger.

7 years!!! I cannot believe its been 7 years since I launched my Mummy Seeing Double blog! What a journey. I have had vestibular conditions (vestibular migraine, Neuritis and PPPD) for 14 years now, where has that time gone?!? After 7 years of having them I felt I had learned a lot on my healing journey and I wanted to share my experiences and set out to help others in their journeys. It was a brave decision and a worrying one, I remember thinking at the time, will I be faced with criticism, judgement and negativity or will it be a positive decision? I was relieved that it was in fact a positive one. Publicly speaking out about any personal conditions makes you feel vulnerable, scared and apprehensive. I had to be raw and real and that meant showing all different sides of my illnesses, the good, the bad and the ugly and that was very scary. 

Over the last 7 years I have learned so much, not just from trial and error with my own personal journey but have learned so much from others. I have met so many people since starting the blog and am so happy that I have helped so many navigate through these debilitating conditions and given them hope that they can live their best life within their limitations. I will continue to do so for the rest of my life.

It has been 14 years in total since my first Vestibular diagnosis, Vestibular Migraine. I have been through a 14 year journey of self discovery, learned how to manage my symptoms and adjust my lifestyle to help me live a happy and fulfilling life alongside some debilitating lifetime conditions. It’s had its ups and downs and I hit rock bottom between 2013-2015, when I was dealing with two Vestibular conditions VM and Vestibular Neuritis coupled with anxiety, depression and PTSD. I honestly thought my life was not worth living at that stage, I just wanted it all to stop, there was no escape. Every day was a struggle, a day full of dizziness, blurred vision with visual snow fading in now and again, vertigo blips, sharp headaches, nerve pain and many more weird symptoms. I kept on going for my children, that’s what got me through and the unwavering support of my husband and other close family members. No words or actions can thank them enough for getting me through the hardest years of my life.

As the years wobbled by, literally, I found ways to manage my symptoms better. Without writing masses of pages of things I have done to improve my life, I will try and summarise here best I can! After coming out the other side of 2015, I needed to take action, I needed to take control, I had to adjust my lifestyle more to try and get better days. I had already given up alcohol in 2013, caffeine in 2014 and I had started to embark on meditation routine, using an app called headspace, in 2014. I felt a lot of my headache issues were down to my hormones, that was confirmed by my consultant in 2012, as my vestibular migraines were originally hormone triggered. However I felt some of the headaches I was experiencing may have been caused by something in my diet, so I went on a journey of eliminating certain foods. The two things I felt were contributing factors were gluten and dairy, I did not want to eliminate both at the same time, so I did one after the other with a big gap between. I pretty much immediately felt better from being Gluten Free, my stomach was not so bloated and my IBS was so much better, which I had been suffering from since my early 20’s. I went Dairy free after that and my headaches started to get better, it was a bit of a eureka moment!

After ridding my body of alcohol, caffeine (both are stimulants, which are not great for anxiety/panic disorder or depression), I rid my body of gluten and dairy, I was thinking, what was next on my list to look at? Since my 20s I have been a fairly active person, going to the gym, walking etc but when I was struck down by Vestibular disorders in 2010 the exercise stopped, I became much more sedentary, the only surfing I did was holding on to furniture to stabilise myself! Of course having new born twins, I was out a little each week doing gentle walks but nothing I would class as ‘exercise’ nothing that got my heart rate up or tones my body or certainly not enough to release those important endorphins. After discovering that eliminating certain foods made me feel better, I started to wonder if increasing my daily activity level would help my conditions and my overall well-being. I started walking more in 2015, just around the block to start with, little baby steps, I would walk with my walking stick to the end of the road and back, then the next week around the block, then after months I was walking about a mile a day, after 6 months I was walking an average of 5 miles a day without a stick…I discovered that walking was the perfect physio for my vestibular conditions, I had been through an intense VRT program (vestibular rehabilitation therapy) at my local hospital between 2013-2014 doing eye and head exercises to help my brain retrain in order for my system to compensate. Yes the VRT did help but I found walking was even better.

After walking more over the year I decided in 2016, to embark on Pilates, maybe I could try some gentle head movements and positions that challenged my system, to help it retrain even more. Walking was great but it was missing the head movement physio that I really needed. Pilates was very difficult to start with, it made me dizzy as hell to begin with, the first 7 weeks were awful, rocking each and every way, it took some time to settle but then my brain got used to the movements and as long as I did it regularly throughout the week I was ok. Pilates helped me so much, it retrained my brain to cope with things like, unpacking the dishwasher, reaching up to get things out of cupboards, reaching down to pick things off the floor, cleaning the house etc So powerful. Not only that but the brisk walking I had mastered plus the pilates released those much needed endorphins and mentally I was feeling so much better in myself, the weight loss was a bonus! I have done pilates ever since! And I have never stopped walking!

One big piece of the puzzle and one thing I tell everyone to practice is meditation and mindfulness. This is KING in recovery and should be in your schedule every day, even if you do just 10 mins when you wake up, at lunch, or before you drift off to sleep. Meditation calmed down my mindset, it helped with the inner negative chatter, the self sabotage I often did, it helps bring down your cortisol levels, stress and anxiety are huge triggers for symptoms. In fact anxiety itself can cause bad symptoms like dizziness and vertigo on its own. I am still quite surprised that more people I speak to do not practice it, but I suppose once I was that person, I did not in the early days. Now I realise how incredibly important it is and plays a huge role in recovery. I practice it every day. Meditation does not have to be sitting cross legged on the floor humming…it can be listening to a piece of music, doing gardening, stroll in nature, just something that zones you out and grounds you. My go to meditation is Insight manager, headspace and nature nature nature.

I get asked a lot about medication, I have left it to talk about last on this post for a reason. The reason is there is no magic pill, no medication that will completely get rid of dizziness, vertigo, anxiety etc, yes it helps but a lot of recovery is down to YOU. I see medication as a plaster, it allows your brain to have space and time to heal, gives it a helping hand, it should never be completely relied upon on its own as a treatment. Whilst the medication is helping your brain have a break, you an then start work on your own treatment for reducing stress, anxiety and changing aspects of your life to help get better eg meditation, exercise, water intake, looking at your diet. There is so much we can do ourselves to improve our conditions, to reduce the severity of them and to live a better life. Medication should be in conjunction with meditation, evaluating your stress levels, reviewing diet (colour nutritious non processed foods being the best! I always try and have one ingredient foods if I can and limit my salt intake), increasing water intake if you do not have enough, exercise (slowly slowly! baby steps)

Medication is VERY individual, we are all so different in how we react to medication, a lot of the posts in my support group on Facebook are about medication eg “has anyone tried Nortryptaline, Amitryptaline, propranolol etc or which meds have people tried”. As everyone is so individual, medication is a very personal journey and full of trial and error, sometimes medication hits the spot right away, sometimes it takes a few months to start working. Typically medication will make your symptoms wors before they get better, a lot of people give up early because of this even after a week or two. I like to review medication after 3 months, then I am giving it a good chance. If after 3 months symptoms are still rife or even worse then adjustment to dose and also maybe a change of medication is in order. Obviously if things are SO bad in the early days of starting a medication that you feel you cannot carry on maybe it’s not the right fit. Always consult a medical professional eg an audiologist or neurologist for medication advice. I was on medication from 2012 to 2019, I went through 4 different types, I eventually was able to slowly reduce my dosage to come off it, it took 6 months to reduce, I wanted to do it very slowly as I have fallen foul before, when I have previously stopped medication cold turkey and got ill from doing so. I came off July 2019 and been self managing since through meditation, diet, exercise etc However if for some reason (hopefully not!) I had a prolonged relapse which didn’t budge no matter what I did, I would have no problem going back on to Nortryptaline if I had to. For now my own treatment plan is working well.

I wanted to touch upon triggers, like medication all our triggers are very different, some have light sensitivity, noise sensitivity, corridors/aisles in supermarket, certain foods eg msg, certain head movements etc I found out about my triggers by writing symptoms diaries for a few years, they were SO helpful to see a pattern over time, it takes about 3 months min to see a pattern. You can see from the image below, I had a scoring system, 0-10 scale (0 being the best and 10 being the worst) I would rate my main symptoms out of 10 each day and write down foods, drinks and the activities I have done each day. The diary is good for consultants to, in review meetings and I found a diary amazing in the early bad days, so that when I had a relapse I could look back and see I did have good days and it gave me hope that they would come again. One thing I have learned about triggers is by avoiding them forever it was not helping me. So I started to face triggers more and more to try and train my brain to cope with them better. I used to wear my sunglasses shopping ALL the time, now I do not, I used to also wear a peaked cap when in bright lights, I do not have to do that anymore as I have retrained my brain over the years to cope better.

I never thought I would ever be able to do what I do now, fly long haul to amazing destinations, go paddle boarding and kayaking, walk for miles in one go, climb a mountain, clean the house for longer then an hour, go to the cinema or the theatre, go shopping without a drop attack or panic attack, go to restaurants or the pub without a dizzy episode or panic attack, exercising a lot (pilates, peleton, weight training and walking), socialising with friends frequently (I used to cancel a lot!). There are just a couple of things I won’t do….go on a boat on the sea (too rocky for me and it caused me terrible issues in 2015 last time I went!) and also go on rollercoasters…not that I am rushing to do that anyway! I am so proud of how far I have come, but its not been easy getting here, this blog is only a tiny part of my journey, a little snippet, one day I hope to write a book and get it all down on paper.

There will be a lot of people out there reading this who are really suffering at the moment and feeling like there is no way out or just not knowing what to do. Please get support, I have an amazing support group on Facebook called Mummy Seeing Double Support, of course there are lots of other groups too. If you are not one for joining groups then you can reach out to me directly through my email, Instagram or Facebook page (links below). No one should ever suffer alone. Also its important to say, that if you are being told something by a medical professional that doesn’t quite sit right with you, then go find a different Dr, not all of them are right, you have to be your own advocate, I learned this over the years. Never lose hope, never give up even though you want to, keep talking, get support and believe in yourself that you can get better.

Thank you for reading this blog.

Lara x

I have listed some links below to amazing Instagram accounts that have been amazing support to me, a wealth of information and inspirational:

The Vertigo Doctor @thevertigodoctor – amazing resource

The Dizzy Cook @thedizzycook – vestibular migraine diet, foods to avoid

Menieres Muse Podcast @menieresmuse – amazing vestibular podcast

Dr Gemma Newman @Plantpowerdoctor – great food tips

Saira Khan @iamsairakhan – wonderful mindfulness, exercise, skincare, wellness and meditation tips

Suzi Shaw @suzi_shaw – inspirational lady, supermum and fellow teetotaller

Sarie Taylor @sarietaylorcoaching – for anxiety, panic disorder, PTSD etc

Amy @the_migraine_life – amazing page, Amy has been through it but thanks to her determination she is living her best life

Vestibular disorders association @vestibularveda – fountain of knowledge, their website http://www.vestibular.org is a must for resource

Sian Day @vestibularmigrainesupport – Top skater, all round lovely lass and inspiration to many

Jacky Hunt-Broersma @ncrunnerjacky – Just incredible!!

Mel Robbins @melrobbins – amazing podcasts and inspirational messages each day

@parentingwithmigraine – lots of useful resource

@hungrywomancooks – because she cheers me up and makes me laugh and has amazing recipes!!

@alibaileylondon – amazing mum with add and an inspiration and her posts make me happy and fellow gardener!

and of course my page! @mummyseeingdouble