I am a very proud mummy of gorgeous identical twin girls who are nearly 11 years old, they are my world. They are my best friends, my companions, my sanity, my little comedy act, they are my WHY. I am also very happily married to a fantastic man, who has been my rock, my sounding board and my therapist!!
Back in 2012 I was diagnosed with chronic vestibular migraines, A nervous system problem that causes dizziness, vertigo attacks and other debilitating and frustrating symptoms. I started having symptoms back in 2010 when my periods returned after giving birth. It started off with bouts of dizziness. My GP kept putting it down to labrynthitis and a recent chest infection, but I was not convinced. I would be walking into town with my girls in the buggy and fall over on the floor numerous times, into hedges etc almost like fainting. I thought maybe my iron levels were low, but had all the blood tests done and all levels were fine. Things got steadily worse as time went on, simple daily tasks became very hard. Then I started to get repeated bouts of tonsillitis and having antibiotics every time (12 bouts in total in the space of a year). This did not help the cause and by 2011 I was very dizzy most of the time, by 2012 I was getting debilitating headaches, dizziness and terrible spinning or sinking vertigo attacks, which would throw me onto the floor, unable to get up until it passed (some know them to be called drop attacks).
After many many trips back to the Drs and getting prescriptions for all sorts of medications to help with dizziness, headaches etc I decided enough was enough, time to research into this more and find a specialist. I was missing out on my girls growing up and spending precious time with them. Luckily my husband had family private health insurance at the time and my GP referred me to see a vestibular specialist called Dr J (now retired). Of the older generation, he was traditional in his approach. Over time he assessed me and do the necessary tests to check if it was BPPV which could be alleviated with an Epley Monouvre, unfortunately the ‘positional test’ he performed confirmed it was not that condition. So the investigations continued. MRIs were ordered, more blood tests and more appointments made. Eventually he came to his diagnosis, which was chronic vestibular migraines. He was 100% sure.
He was convinced that they had been caused by having the twins, so hormone changes and fluctuations were to blame! But one thing was clear, I had to get my tonsils out and fast as the repeated tonsillitis was not helping matters and not helping me recover, as each bout was putting pressure on my vestibular system and damaging the nerves. After my tonsillectomy in January 2013 unfortunately I still was dizzy. Things got very bad by March/April and on the 13th April 2013 I suffered a massive and very frightening vertigo spinning/dizzy/panic attack on the motorway. I had to call an ambulance out, this incident caused PTSD and from that day I have had terrible panic disorder. I had already been suffering from general anxiety disorder two years prior to this day.
I was then referred by my ENT consultant to have full vestibular ENG testing at our local hospital in the balance department, he felt something more or new was happening to me, it could not have just been the migraines causing these worsening attacks. The Vestibular test at the hospital is about 2-3 hours long. Lots of clever tests like VEMP tests, caloric test etc most which are designed to bring on symptoms so they can detect any issues.
After the vestibular test was completed I got the verdict… it was a double blow, the VEMP test had identified a dysfunction in my right ear. It was not responding and seemed I had nerve damage. I was told I had a second vestibular condition called Vestibular Neuritis, where the vestibular nerves become inflamed, disrupting your sense of balance (and also cause dizziness and vertigo). I had two nerves that were damaged, gravitational and positional in my right ear, the nerves were not responding at all. I had got to the point where I had to rely on a walking stick to get me from one room to the other. I can only describe the feeling as being on a boat on very rocky seas! A swimming sensation in your head, if you lay down at night, inside your head shifts and turns sharply, like on a roller coster. Duelled with the fact I had debilitating headaches every other day, tinnitus, earache, I was not in good form!
My world was literally thrown upside down once again, I was told I would ALWAYS have these conditions and the debilitating symptoms for the rest of my life, my balance would NEVER be normal. So naturally I fell into a deep depression, a state of high anxiety, I could not believe nor understand why this had happened to me. I was previously a healthy, confident, out going and happy person! Someone who was always the life and soul of the party! Loved to drive, loved to drink, loved to party…it was all gone in an instant!
My world changed from colour to black and white, all the colour had drained from my core. Friends and family could not understand or grasp the concept of the balance symptoms or any of the other issues I was having or the mental health issues. As they are invisible conditions its so hard to understand, its not like a broken leg, or a cut on your arm, you cannot know what it feels like. I could see the frustration consuming my family and friends, they wanted to understand but unless they had a 5 minute bout of what I had (I would not even wish it on my worst enemy!), how could they?
I spent day and night researching my conditions on the internet, going onto forums, vestibular websites, speaking to lots of people etc I began to not feel so alone, after reading 100s of posts from sufferers of either condition it seemed there were so many sufferers out there. And it seemed that depression and certainly anxiety was a very common link to the conditions. Apparently the balance part of your brain is very close to your emotions part, so it only seems natural that if you always constantly feel like you are going to fall over, you would feel anxious at the risk of doing so. At the very beginning I could not stand up with my eyes closed without falling over after 5 seconds. I became a recluse, I never wanted to step out my door unless I really had to.
I was enrolled into weekly vestibular rehabilitation therapy sessions at the hospital soon after my results. The sessions would last about an hour, luckily at the time we had private health so I got a number of sessions covered. Thank goodness as I also had been seeing consultants privately, MRI scans, ENTs, neurologists etc so the bill was mounting up!
I did vestibular rehabilitation for just over a year, I did see some significant improvement throughout the VRT but the anxiety and depression was still a problem. I got some advice and was referred to a CBT (Cognitive Behavioural Therapy). My Therapist was amazing, she got me straight away, I was diagnosed with GAD (general anxiety disorder) its one of the best things I have ever done. Without my therapist I do not think I would be where I am today. She taught me how to separate my anxiety from me, not let it consume me, kick it away, when it kicks in!
Although I was better then I was, I still had debilitating symptoms. My consultant retired and I got referred to a new consultant that started at the hospital in 2015, I had a fresh pair of eyes on the situation! After being on amitrytaline for some time and having the dosage adjusted, it just didn’t seem to be working really, maybe my body getting used to it. So my new consultant took me off it and instead in February 2015 was put on Propranonol, beta blocker. It was the magic pill I was after! Finally something that worked, it treated my light sensitivity issue which was a trigger for the vertigo attacks as well as the head movements, I still experienced daily dizziness but it was not as strong as before. At last there was an improvement!
The beta blocker was also great to treat the anxiety too, although I had not suffered quite so much with that since I was signed off the CBT. I started walking more in the March once the beta blockers started kicking in, by the time May came I was doing 8 miles a day, I felt fantastic, a new person, the old me was coming back!
But then come June I started feeling breathless on my long walks in the sunshine, it seemed I had developed some asthma symptoms. I had a chest xray at the hospital and they confirmed I had peribronchial thickening of the lungs and asthma. I was put on a brown steroid inhaler and one reliever. These seemed to relieve my symptoms a bit, but then I started to suffer from terrible headaches, so bad that I could not get out of bed to take my children to school or do daily normal activities, this went on for many weeks.
After visiting a respiratory consultant and having numerous blood tests and having a CT scan, he confirmed that my peribronchial thickening had got better, probably due to me coming off the beta blockers and also confirmed I had a pretty significant allergy to grass and tree pollen and house dust, something that I knew I’d had for years.
I had also at the same time, saw an immunologist and allergist who confirmed I also had a significant intolerance to dairy and gluten and advised I try and come off them. So in October 2016 I made drastic changes to my diet and also started Pilates, I came off gluten completely and then dairy and started to follow a program run by the American nutritionist Danette May. I soon found that being off gluten even just after two weeks was a massive benefit to my vestibular migraines and the Pilates I was doing every night was my daily physio/VRT for my VM and vestibular neuritis. I also in time stopped having any refined sugars and now eat only naturally occurring sugars eg in fruit, honey etc. I also do not have any caffeine or alcohol (as of April 2013!) but I still love to party despite not being fuelled by drink! Water is my new fuel!
I felt on top of the world between October and December, and then my world fell apart once again. I had relaxed on the Pilates a bit over the Christmas period, then by January I had stopped doing it. Come mid January my left abdominal pain was getting worse and worse, by March I was in bed most days. After lots of visits to A&E and numerous appointments with a gynaecologist and many ultrasound scans. I was then referred for a laparoscopy. I had been experiencing what I called Ovary pain badly for the last 3 years, but that year was worse then ever. Unfortunately due to me being in so much pain, my vestibular symptoms got worse and worse and relapses were rife.
But I was not going to let this get me down, I was going to get through it all and get back to feeling good again. I had my Laparoscopy in October 2017 and they found extensive adhesions and endometriosis and a large cyst on my left ovary.
Although I have had nearly 11 years of many lows and debilitating symptoms, I have tried to maintain my positivity. I have learnt the art of meditation which helps me relax and improves my mindset. I also do Pilates, weight training, walking or cycling daily if I can and I eat a clean and healthy diet and drink loads of water. I have found what works for me and you can too.
I started my blog http://www.mummyseeingdouble.com in January 2017. The main reason for me starting a blog was to tell my story and give people with vestibular conditions and mental illness hope and inspiration. I have proved, not just to myself, but to the professionals, that if you look after your body and mind you can improve your health and heal. On social media I now have over 12,000 followers who help raise awareness too. I also have an amazing private support group on Facebook called Mummy Seeing Double Support, with over 600 members. Its an amazing place to get support and such a friendly group, I have met some very brave and courageous people and made some lifetime friends.
I am also now an ambassador for Vestibular Disorder Association (VEDA) in the USA and a member of the Menieres Society and MIND. I am so passionate about raising awareness of these invisible debilitating conditions and supporting other sufferers. And hope that people reading this story can be inspired and feel more positive that there is light at the end of the tunnel. If I can do it, you can! #movetoimprove
Thanks for reading my story!
photo credit Alexander Leaman Photography