I am a very proud mum of gorgeous identical twin girls who are now 7 years old, they are my world. They are my best friends, my companions, my sanity, my little comedy act. 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 vestibular migraines, a nervous system problem that causes repeated dizziness and/or vertigo attacks. They felt my vestibular migraines were originally caused by hormones after having the girls. I was quickly referred for a tonsillectomy in January 2013, holding out hope that this could fix my issues! I had suffered from 12 bouts of tonsillitis between 2011 and 2012, which might have contributed to vestibular nerve damage.
After my tonsillectomy I felt great. This lasted all of a few months. On the 13th April, 2013, I suffered a massive dizzy/panic attack on the A3 whilst driving on my own. I had to call an ambulance and was checked over. They put it down to a dizzy/panic attack and asked to get checkout out. My heart rate had reached 166 and I was not in a good state. I had never suffered from anxiety at all before, but because of this dizzy incident it left me with Post Traumatic Stress. (I cannot expand on this incident too much as I have PTS after it and my therapist has told me to put it to bed and move on!)
I took the advice of the ambulance people as I was still experiencing constant dizziness and bouts of vertigo. I was referred by my tonsillectomy consultant to have a vestibular test at our local hospital in the balance department because they suspected that something more was happening and it could not have just been the migraines causing these attacks. A grueling three hour test that throws you upside down in machines, air blown through your ear canals to bring on vertigo attacks, dots on walls to follow, very loud dull noises blasted through your ears, you name it! It is certainly something I would not want to repeat but certainly vital if you want to get to the bottom of things. (Big tip! If you have a doctor that just fobs you off with labrynthitis and you are getting repeated bouts, go and have a vestibular test.)
Soon afterwards, I got the results of the tests. It was a double blow. I was told I had 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. I had to suddenly rely on a walking stick to get me from one room to the other or even sometimes across a small room it got so bad. I can only describe the feeling as being on a boat which is on the moon! A swimming sensation in your head, if you lay down at night, inside your head shifts and turns sharply, like on a roller coaster. Combined with the fact I had debilitating headaches, I was not in good form!
My world was literally thrown upside down, I was told I would ALWAYS have these conditions for the rest of my life, my balance would NEVER be normal. So naturally I fell into a state of depression and anxiety. I could not believe or understand why this had happened to me. I was previously a healthy, confident, outgoing and happy party-goer! I was always the funny drunk at the party! The clown!
My world changed from color to black and white; all the color had drained from my core. Friends and family could not understand or grasp the concept of balance issues and migraines. As it’s not a visible condition like a broken leg or a cut on your arm, others 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 five minute bout of what I had (I would not even wish it on my worst enemy!), how could they?
I spent my nights researching my conditions on the internet, going onto forums, vestibular sights, speaking to lots of people etc., and I began to not feel quite so alone after reading hundreds of posts from other sufferers. It seemed like depression and anxiety are a very common link to the conditions. 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 five seconds.
I was enrolled into weekly rehabilitation sessions at the hospital that 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, neurologists etc., so the bills were mounting up!
I did vestibular rehabilitation for just over a year. I did see some improvement, but the anxiety had increased, and finally I admitted that I had a problem and was referred to a CBT (Cognitive Behavioral Therapy) counselor. She was amazing! She understood me straight away. I was diagnosed with GAD (general anxiety disorder) and was with her for about a year. It’s the best thing 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, to not let it consume me, to kick it away when it kicks in!
In June of 2014 I decided to ask the balance consultant to do a revised test and low and behold, the right ear nerves had revived! She could not believe it, she was sure that they had completely popped and gone! I think she was close to tears too! I was in shock, tears, amazement. I remember my husband picking me up afterwards with the children in the car and he thought I was crying with sadness, but it was joy. There was light at the end of the tunnel, I would not have it forever!
I still did have vestibular migraines, but I saw a new consultant in 2015, 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. So my new consultant took me off it and in February 2016 I was put on Propranonol, a 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. I still experienced daily dizziness but it was not as strong as before.
The beta blocker was also great to treat the anxiety, although I had not suffered quite so much with that since the CBT. I started walking more once the beta blockers started kicking in, sometimes doing 8 miles a day. I felt fantastic, a new person, but the old person coming back too!
But in June I started feeling breathless on my long walks in the sunshine, it seemed I had developed some asthma symptoms. I had a chest x-ray at the hospital and they confirmed that I had peribronchial thickening of the lungs, which was typical of an asthmatic. I was put on a brown and blue inhaler, one steroid and one reliever. These seemed to relieve my symptoms, 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 weeks.
After visiting a respiratory consultant and having numerous blood tests (in fact, tons of them!) and having a CT scan, he confirmed that my peribronchial thickening had gotten better, probably due to me coming off the beta blockers, and also confirmed I had a pretty significant allergy to grass pollen and house dust mites. Was this finally the excuse I was looking for to tell my husband I cannot do the house cleaning!!? It didn’t wash!
I had also at the same time seen an immunologist and allergist, who confirmed that I had a significant intolerance to dairy and gluten and advised I try and come off them. So in October I made drastic changes to my diet and started Pilates. I stopped eating gluten completely and dairy, although had been doing a bit of this anyway for some time. After just after two weeks I noticed a massive benefit to my vestibular migraines. My consultant then took me off the beta blockers, as he was concerned it had made my respiratory issues worse. I also stopped having any refined sugars and now eat only naturally occurring sugars e.g. in fruit etc. I also do not have any caffeine or alcohol (as of April 2013!) but I still love to party despite not being fueled by drink! Water is my new fuel!
Since October I have lost over 22 inches over my body and I have been doing Pilates every night since! I feel so much better in myself and my migraines are fewer now, although I still do have a bit of light sensitivity as I am off medication, it is manageable and will be reviewed by my consultant in February.
Although I am not completely out of the woods quite yet, I feel so much better than I did! I have come so far in 4 years, from using a walking stick to get across my lounge, to now skipping across it walking stick free. I practice mindfulness more now, using a fantastic app on my phone called Headspace. I do mindful Pilates every night and follow an amazing lady called Danette May, who has taught me how to eat clean and love the body you live in. I have never stuck to a plan as long as this before and do not intend to fail, I love it so much, it’s so easy to stick to! I even lost 1 inch being away in Lanzarote on holiday over Christmas!
The main reason for me starting blog is to give people with vestibular conditions hope, I have proved, not just to myself, but to my consultants, that if you look after your body you can improve your health. I hope my health continues to improve from now on so that I can enjoy my children, after not being able to enjoy them fully through my dark dizzy days. I still have dizziness every day but it’s something I have learned to try and cope with. I am luckier than most people as I have a loving family and great support around me.
For years dizziness and vertigo have consumed my days, I let it for some time spoil time with my children and family, it engulfed me, I was a slave to my disorders. But thanks to CBT and a change of lifestyle I HELPED MYSELF. That is the biggest advice I can give someone who has something similar out there, you just cannot let it consume you, you have to fight, or at least try. The simplest activities used to be the hardest for me, unloading the dishwasher, moving my head to the side to look at someone, bending down to pick something up, walking down the stairs, driving a car, being on a computer, going into shops (bright lights!), walking down corridors with lights, cinema, walking my girls to school, housework (thank god for my cleaner, Emma!), I could go on and on. Once I wrote a list and it was over 35 things! Now I can do most of those activities, but some are still hard, and when I have just the slightest headache I get my light sensitivity back and I have to readjust my day.
One major thing I have learned throughout this is who my friends are and who is there to support me. I have gotten rid of the people that do not serve me and who clearly do not care or even want to understand. Also, it has made me realize how selfish and all-consuming some people are. This experience, although a nasty one, is something that I am actually grateful for in a twisted way! It has helped me to be thankful for every moment I have with my children and family. Those major things that I used to get stressed about have no bearing on me now and I can let them pass by without a care.
I know some people reading this will think, well she didn’t have cancer or anything really bad, so why is she telling such an elaborate story? Yes, this is true, I am luckier than most people. Some people are dealt awful cards in life, which saddens me. But this affected my life, my family, my marriage, it had a profound impact on the way I saw life. Some days I have to say I was close to….. (I do not have to tell you the word), but somehow I found the inner strength to get through. On my darkest days, I remember punching walls and doors, in fetal position in the corner of a room at home, crying. If it had not been for my amazing husband and children I could have crumbled due to the mental side of things. I certainly do not think I would have been here today.
I have always been a happy person, always smiling, but most of it was a front in the old days. My therapist told me to open up, tell people how I am feeling if they ask, tell the truth. I did not do it for a while because it’s not me. I like to put a brave face on. I do not like people to worry about me. I just get on with it.
My husband became the designated driver during my dark days when I could not do simple tasks and I cannot thank my amazing parents enough for their support, driving me back and forth to hospital appointments when my anxiety was too bad to get in a taxi or get on a bus. My husband and my parents have mentally supported me too, being a shoulder to cry on (more times then I care to remember), telling me to pick myself up and get on with life. I owe them my life. I also could not have carried on with my business if it had not have been for my colleague and friend Caroline. She started working with me four years ago. She shares my same passion for Corporate Baby (https://mummyseeingdouble.com) and is dedicated to the core. She picked up extra work when I could not function fully, although, as she will tell you, I did not let my disorders get in my way. Work was my escape.
Now I will hold my head up high, knowing that I can find the inner strength to get me through, knowing that I have the support. I will be better one day, I know it. I just have to get there myself.