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
35 Comments Add yours
well done Lara! great honest blog and as you say when the shit hit the fan you find out who your friends are, not a bad thing 😉 you only need positive supportive people around you! love the sound of the new way of eating please share more…..big hugs and keep going xxxx
Thank you so much Zoe your words are very kind and I am glad you like my blog. I can tell you more about the eating plan, its amazing and I will always stick to it like glue, I have not faltered yet in nearly 4 months. I have Danette May to thank for that! x
Lara, this is such an articulate, honest and positive account of your illness. I have nothing but admiration for how you’ve overcome such challenges in your life and your ability to keep going even when times were at their darkest. I felt very moved and inspired by your story, and I’m sure your blog will help many others with the condition. Keep writing! Christabel X
Thank you so much for your kind words Christabel. x
I never really understood the extent of your illness until I read this. Thank you for your honesty. We all have our challenges in life, but I think you have had your fair share these last few years. Well done on becoming a stronger person for it. It is incredibly admirable. Grace x
Thank you for your kind words Grace. My reasoning behind this blog is to reach out to people who might be suffering from a similar vestibular condition and to somehow support them and give them hope. If we help ourselves we can do great things. I am luckier then most and do not want sympathy but instead want my story to be an inspiration to sufferers out there that might be in the dark place I once was. There is light, there is hope and there is a life to live. xxx
Lara – reading your blog was like reading about my own life for the past year. Thank you so much for sharing – there is always light at the end of the tunnel, it’s just hard to see it sometimes.
Oh Emma I am sorry to hear you are still suffering, its just awful for you. Stay strong and I am always here to talk if you want to. xx
Finally got around to reading this properly. You have an amazing energy, always. You’re kind, generous and hilarious all at once. Your illness hasn’t changed that and I’m so delighted that, amazingly, you’ve somehow managed to control it, punch it in the face and start to feel positive again. A brilliant read and I’m looking forward to making the muffins (although the ingredients freaked me out a bit, not usual cupboard ingredients in our house!) and continuing on the Headspace journey. Well done x
Oh my God Your experience is very similar to mine.I was diagnosed with Meniers disease after having my last child.It’s very debilitating.Hor money then was the trigger but also is caffeine,refined sugar,alcohol and anything over processed.2 and a half years later I’m much better.I lost 2 stone and I’m in a much better place now.Having CBT as well for anxiety issues related to high blood pressure.It was brilliant reading your blog and made me feel like I’m not alone
Hormones I meant to say
Hi Caroline, I do not think I replied to you, sorry! I am sorry to hear you have Meniers disease. Hormones have a lot to answer for that is for sure! I am such a believer in the fact that stimulants can really play a key role in making vestibular sufferers worse. I have definitely found by cutting out alcohol, caffeine and sugar it has helped such a lot. I have just written a blog about CBT its on my home page in the posts. I am also just about to write a blog about anxiety so have a read of that as I am sure it will resonate with many people. I hope you continue to get better and well done on the 2 stone loss and identifying your triggers which is the hard part, you should be immensely proud of yourself. x
Lara, I too was DX with vestibular migraines. I don’t fully understand it still after suffering for 7 years. I went to dozens of doctors and specialists. 98% of these doctors blew me off and told me that there was nothing wrong with me. That it was all in my head and that all i needed was to see a shrink. My VM dx came from a ENT who was clueless and I believe he just guessed. I also got many other dx’s from other doctors. Needless to say, I’m still suffering. I don’t know much about cognitive therapy and clean eating. I was refered to vestibular therapy which I did for 2 years. It really helped with the dizziness. Like u, I still have the dizziness daily but its more manageable and I don’t have the severe nausea that I used to have. I have always been so disappointed at how uneducated and unsympathetic doctors were about this debilitating condition. Thank you so much for sharing your story. It really does help the sufferers out there who don’t know where to turn.
Hi Tara, I am not sure if I already replied to you…but sorry if I have not. Thank you so much for taking the time to comment. Mine has been 7 years in full now as my symptoms started in 2010. I wrote a blog the other night about CBT its on my home page in the articles. I found it helped so much with the anxiety and depression side. The daily dizziness is like groundhog day isnt it but I think its just part and parcel of being a VM sufferer. I am hoping things will get easier as life progresses, were you put on any medication for VM? Clean eating has been life changing for me, stripping back my diet, no sugar (no stimulants is good for VMs) no gluten and I restrict dairy). My daily dizziness has got so much better since I changed my eating habits in October. Also the mindfulness side has been very helpful, as I think some of my anxiety was causing issues with my dizziness etc when it was bad. I hope you continue to improve, do keep in touch and let me know.
I have been destroyed by VN which failed to compensate. This last five years has been a battle with the physical and emotional challenges .I have been in VRT rehab for four years and do this three times daily have never missed one.
I have really bad days and decompensate often but I just have to push through. My Professor told me I have to do VRT now without an end date as this is the thing that keeps me functional albeit far below what is considered normal vestibular function.
I think for me now never actually meeting another human being who suffers this debilitating condition somebody who just knows how frightening and life changing this is means loneliness on an epic level.
I often thought of writing a blog and I commend you as the written word makes it so very real. I imagine that we all hope life one day will return to normal. I know now mine will not but it challenges me everyday and I challenge it straight back.
I am ever the optimist in spite of the medical reality but I would go bonkers if I did not have optimism and my new best friend VRT.
Hi Jane, Thank you so much for writing this, you should be extremely proud of yourself, you have done so amazingly well. Back in 2013 I was told by my VRT consultant that I would have VN for the rest of my life, that was the start of the very dark days for me, as I slumped into even more of a depression and anxious mess! I remember one day waking up and thinking – NO, I am not going to let this beat me, I am going to fight with everything I have, so I did, how I found the strength god knows as physically I was drained by VN and VM. But I thought to myself, I have to be positive I have to be strong, there is no other option. I started to think, I cannot just rely purely on VRT, thinking it will suddenly make me better, I have to introduce other things to help myself….so started CBT, mindfulness and also a bit of exercise too eg walking a bit more. That was the changing point in my life. I found if I did not do a quick walk every day I would regress, if I sat on the sofa for longer then 20 mins I was in tatters, so I would get up and go for a walk or do other things to keep my brain retrained. I love your line in your message above…..It challenges me everyday and I challenge it straight back…..I love this, I will quote this, it is exactly what you have to do. I discovered gluten free, dairy free and sugar free lifestyle has really helped, plus I do not have caffeine or alcohol, you have to strip it all right back…but I am sure you are aware of this. Please keep in touch and I pray that one day you will be rid of it all…I am on facebook too which is http://www.facebook.com/mummyseeingdouble.com and twitter @x
Thank you for replying just knowing you are not the only one.Sometimes I wonder what it would be like to go for a walk with a fellow sufferer knowing that they too just get it ,that would be amazing.So many everyday challenges I think would be so much easier even laughing at wow this path is one cool mattress I’m walking on .👀👣👂🏻.
I too have similar symptoms, last March I was malnourished due to a GI disease and this cause vitamin B1 deficiency in my brain and I got acquired Nystagmus, imbalance and was pumped with thiamine-B1 into m body, I could bare see nor walk. After 9 days in the new hospital I was transferred to, I felt better n was released, then a month at home, my head started to feel weird and I could barely walk. It’s been 9 months and my neurologist and Otologist still haven’t given me a straight diagnosis. I use a cane and a wheelchair. I take Klonopin to relieve the dizziness but now it’s beginning not to work. I’ve been given many different types of meds and they didn’t help. I just had my 5 th brain MRI if nothing shows up then I will need to do the ENG balance test. This is so dibilatating and always have to rely on others. I have not done VRT because more than half the week I’m so sick from the nausea and I get weak, not sure what to do. I get bad head pressure when I walk, sometimes my ears hurt too, I tell the neurologist team and they don’t say anything. I had a spinal tap to see if I had too much pressure going to the brain but that was negative as well. I’m usually fine lying flat but once I lift my head forget it, it is horrible.
Linda, I am so sorry to hear of your symptoms, not knowing what it is, is the hardest thing. It is so easy to get chucked around the hospital seeing every GIST under the sun, with no clear diagnosis after each apt. I think I have seen very GIST known to man, neurologist, immunologist, allergist, gist gist gist! ENT, migraine consultants, respiratory, you name it! have you had the balance test yet? Do let me know once you have had it done, hopefully it will give you a clearer answer as its rather indepth! one strange thing about my conditions is I have never suffered from nausea at all, which I find a bit bizarre considering how swimmy my head gets and the vertigo and the terrible migraines I can suffer. I know that there are a lot of vestibular conditions that can cause nausea such as BPV (Benign Positional Vertigo). Have you tried any diet changes? I have found cutting out certain things have really helped. I did vestibular rehabilitation for over a year and it did seem to help for a while but then I started to be bad again. There are so many things you could try and as I said in my blogs what works for one person might not work for another. All you can do is try things out, you have nothing to loose and see if things work, I would suggest you make a diary of symptoms if you do not already, it really helped me identify triggers. Use scores from 1-10 regarding the intensity of your dizziness, nausea, vertigo etc. it will be interesting to hear what the balance test shows up, please let me know. Lara x
Thank you so very much for giving me hope. I will be trying to find a CBT immediately and looking forward to more of your posts!!
All the very best Judi please keep in touch and let me know how you get on. I hope you get a good Cognitive Behavioural Therapist. Some times if I wonder off the right path I go back and have a session with mine. x
Hi Judy, I wrote a blog about CBT the other night you can find it on my home page under articles x
This sounds like me, apart from i suffered a bang to the head which caused my symptoms. I have been suffering everyday for 3 years, as you cant see this no one properly understands but it is an awful thing to live with and very challenging it has changed my whole life.
Where are you from? No doctors seem to understand or do anything, i have never been reffered to a neurologist.
Hi Sarah, Sorry to hear that you have been suffering for the last 3 years. The bang to your head, did you go and see someone to look into this, as ear crystals can get dislodged very easily and certainly a bang to the head could contribute to this, there is a manoeuvre that Drs do to adjust and put the crystals back in the right place! Having the crystals not in the right place can really put you off balance. If you have not looked into that then maybe something for you to look into. To be hones I think I was referred to the neurologist quite a while ago as they simply did not know what to do next with me! He was pretty unhelpful for me, not a great bedside manner, he put it down to tension headaches. But one thing he was right about was the beta blockers, he advised I go on those but my Dr and consultant at the time did not want me to. It was only 3 years later when I get a new consultant that I get put on beta blockers and they helped me tremendously, although had to come off them for respiratory issues. I think with the vestibular it is very difficult to diagnose the exact one, there are so many different types of vestibular conditions. Have you been referred to your audiology dept at your local hospital? Have you had a 2-3 hour vestibular test (I am not sure if they do it in all hospitals) I am in Surrey so attend the Royal Surrey County Hospital its amazing. The care I have received has been very good. But as I said in one of my blogs once you are in the hospital system you can see every GIST under the sun! And get chucked from pillar to post! Where are you based? Lara x
Thanks for your reply. Im in Newcastle, after mri and ct scans, ear syringed and being constantly fobbed off I was referred to ENT department. They done a few tests but definitely didn’t last 3 hours they did try a manoeuvre for ear crystals but didn’t help but they put hot and cold water in my ears. They gave me exercises which helped my balance but i still suffer everyday but manage certain things better. I was told i had a vestibular insult but i feel there is more to this, it has stopped me doing alot of things eg flying as i had an awful experience when i flew last time which scared me, so i refuse to travel abroad and i love my holidays. I have just started CBT as they think this might help as they think it has caused me anxiety.
Bright lights effect my eyes and i get terrible light sensitivity it has really effected my vision have you found this?
Is the Royal Surrey hospital private or nhs? I was even thinking of paying to go private as i would have liked a second opinion.
Its nice to speak to someone who understands what you are going through, i feel like i have no one to talk and don’t want to bother people. I am also sorry you are suffering.
If you want to take this off line you can email me at email@example.com x
You have gone through so much Lara. Hopefully you are finding ways to keep it at bay. It’s amazing your sharing your life with others and showing they are not alone if they have this too. Sending love
Such an interesting post about something that is new to me. Thank you for sharing your experience
Such an honest, positive blog. I have huge amounts of respect for your strength and the person you are.
Hi Nicole that is very kind of you to write this comment xx
Although not the Same, I suffer from panic attacks , and have two sons with autism, going out and sometimes everyday tasks are hard, but I try and remember no matter how hard today is -it’s just 24hrs and I can do it, look forward to reading your blog xx
Sorry to hear you suffer from Panic Attacks and your challenges in life. You are an inspiration, just the fact that you are getting on with your days and persevering, amazing, you should be very proud of yourself. xx
I have a very similar story to yours which started November 2015. Along with nortriptyline and a beta blocker I also had CBT and started using the headspace app- was crucial in my recovery. My daughter is turning 6 next month and I had to battle in every way I could to get back my life. We can do this!! X
HI Caroline, thank you for taking the time to write a message on this blog. we so can do this!!! xxx