So today was the day I popped back to Royal Surrey County Hospital Audiology (my second home!) for testing. I was going for two reasons, one to have a VEMP test (will explain what that is in a moment!) and the second was to have a positional test done (for BPPV).
The last time I had a VEMP test done was 2014 and before that 2013. VEMP testing or VsEP is a neurophysiological assessment technique used to determine the function of your inner ear organs/nerves. In 2013 I had a VEMP test, as well as Caloric test, vision, hearing and many more tests besides! to determine what was going on with my extra balance issues (on top of my VM) and proceeding a major episode in the April 2013. I had already been diagnosed with vestibular migraines in 2012 after two years of searching for answers and getting fobbed off with labrynthitis by GPs and anxiety etc.
In 2013 the testing was unfortunately conclusive that I had Vestibular Neuritis on top of Vestibular Migraines (MAV otherwise known). The left inner ear organs/nerves were working perfectly on testing but my right ear was totally non responsive, it was retested quite a few times to triple make sure! My gravitational and positional nerves were totally caput! A result of repeated viral attacks over the years (over 12 bouts of tonsilitus) but more so the number of antibiotics I was dished out by the GP! Angry doesn’t come close! This is why I campaign and raise so much awareness, so no one has to go through what I have been through!
Vestibular neuritis was a hard diagnosis to take on board as I had already been battling with chronic VM (Vestibular Migraines). I took my Vestibular Rehab Therapist’s and consultant’s advice at the time and changed my lifestyle dramatically. I gave up pretty much everything to try get better. At the time they said unfortunately once inner ear nerves are damaged to that extent there is no rejuvenation. I was not going to have it! I was going to fight and better my life to try and improve my symptoms best I could. So I started my healthier lifestyle quest, gave up alcohol, gave up caffeine and bad food, drank tones more water, got better sleep, started CBT, started VRT and many other dramatic changes!
Then I felt that things had improved over the next year, so in June 2014 I went for a retest. To our delight (mine and my therapists) the right ear was showing signs of improvement! I instantly cried, my therapist was welling up too! She repeated the test again to double make sure and yes it was definitely true! They were showing signs of working, although not fully working to their maximum ability there was some life in them, some glimmer of hope. I left there feeling so much more positive. From that day forward I improved my lifestyle even more, joined a brilliant food program, called Danette May and started pilates, walking and also I started taking a new medication for my VM called Propranonol in 2015.
By 2016 I felt so much better, I was finally getting somewhere….Then endometriosis darkened my door and things went a bit downhill in 2017, however I continued my healthy lifestyle but my exercise had to stop due to pain. In October 2017 I had an operation to rid me of Endo, adhesions and a large cyst on my ovary. However I was left with some Endo on my fallopian so a possible Salpingectomy may be in order in the future! But I have the Mirena coil to manage the pain.
In November I did a talk at Royal Surrey County Hospital in their balance group. It was lovely to see my VRT therapist again and thank her for everything she did for me. If it had not been for her I would have never got into meditation and started CBT, which were the two main things that have improved my mindset and physical symptoms. I mentioned that it would be interesting to have a retest again for my VM to determine if its improved more so since 2014 or stayed the same. So I got a referral to the balance dept and the date was set for 4th June 2018!
So today came along, I was so nervous and apprehensive about the results! Could my nerves have improved more or would they be still the same as last time? I got wired up and then she started the VEMP testing, you have pads put on your head and neck. They then put ear plugs into your ears, and they play a VERY loud pounding, pulsating noise. Not the most pleasant of noises but its fairly short lived. Then a lower tone is played after the loud ones. I did this 6 times today. I was watching the graph lines go up and down and trying to compare them to the left working ear. I am not trained in interpreting these lines but they looked pretty bouncing up and down the screen!
After the testing was done, she had a good look at the results……….
YES YES YES!!!!!! The results were fantastic! My right ear nerves are working at the same level as my left ear. What a total relief. I found it very hard to fight back the tears but after I left I balled my eyes out to my husband! He was welling up too and gave me a hug which was nice. Whilst I was in the testing room they also did the positional test on me to determine if I had BPPV and dislodged crystals. Luckily that test was negative so I am very very happy about that!!
So now I can concentrate on my Vestibular Migraines and mental health conditions and not have to worry about Vestibular Neuritis. I am so over the moon and to celebrate I have had a decaf green tea and a pint of water!
I feel it really gives others with Vestibular Neuritis hope that things can get better. It has been a difficult journey to this point but I am hoping things can improve even more so with my VM. I never ever thought I would ever write a blog post saying that my vestibular neuritis is better and gone I hope forever!!! It seems that in 2013 although my nerves were not responding they were not dead, by changing my lifestyle for the better I saved them somehow! It goes to show how important nutrition, exercise, mindset and a healthy lifestyle is for recovery.
If anyone wants to ask me about anything please feel free to send me a direct message on the Mummy Seeing Double Facebook Group or message me on here or via email dizzy@mummyseeingdouble.com
Love
Lara x