Hi all, although I am new here I have been using the site for well over a year now and thought it was time to give something back after taking tips for so long.
My story starts in October 2018, 2 weeks after I had returned back from my honeymoon and getting married. My wife and I were looking at new houses with my parents when I suddenly felt very dizzy, I thought I was just hungry and it was the start of a (normal) migraine. Alas it was not! A few days later I was starting to panic as I was still very dizzy - I describe the dizziness as the horizon line would move up and down as I walked, but would be okay if my head was still - I booked a GP appointment thinking the worse that I had brain cancer. I was diagnosed with BPPV and told to do the epley maneuver whenever the dizziness was at its worse. After trying this and nothing happening after a few weeks and by now extremely anxious mostly thinking I was dying, I went back to the GP, this time I was referred to a balance specialist.
The specialist appointment wasn’t until Jan 2019 and between Oct - Dec my dizziness had become a lot worse. I was now suffering from these “attacks” in the middle of the night. I would wake up around 12-2am my head would be spinning, my eyes would shake violently (nystagmus) so much so that I would lose my vision when it was at its worse and severe vomiting. This would happen once or more a week and would last around 4-5 hours. It would leave me feeling like I had a hangover until the next one happened again. This was definitely my hell, I had no idea what was happening to me, my work life had suffered so much, I was having a day off a week if not more. I was also suffering from pain in both ears, tinnitus, painful neck and shoulders, eye pain with blurred vision and tiredness
Dec 2018 was when I had my worst attack on the way home from work. I was just arriving into St Pancras train station when suddenly the attack started, I quickly got off the train and sat down at the station, I had no signal as its underground so had to ask someone to get help. I was taken upstairs and just managed to get to the top before I collapsed to the floor. I remember someone talking to the emergency services and the next thing being strapped into a chair being taken to the ambulance. This to date was my worst attack I have had. I was pumped with many different drugs and not a clue what was happening until it eventually the dizziness calmed down. I was discharged in the early hours of the morning and was told it was vertigo of some sort and that I needed to book a GP appointment to find out more (great help). The next day was definitely something I had never experience before, I knew I was at home but still had no idea where I was or what I was doing.
Jan - March 2019 I was attending my balance specialist appointments, which I found out to be balance therapy. I was ask to do a version of the Cawthorne Cooksey exercises, which I did, although it made the 24/7 dizziness even worse.
April - May 2019 For no apparent reason I had started to feel slightly better with the 24/7 dizziness (yes it had continued since October). I worked as a construction manager for a well known house builder in London and I was supposed to work a Saturday and on Friday night I had an attack. It had been agreed my wife would call in sick for me as I was either sleeping or completely out of it and this weekend she did this. To cut this part short I had disciplinary action taken against me because “I failed to follow reporting procedures” and was given a written warning. It was this point the 24/7 dizziness came back like never before and was a lot worse than before.
It was this point I was suffering my worst, I had never felt so low, those thoughts that you never want to think about were creeping in. I quickly want to the GP and said I needed to be put on something to calm myself and for the migraines. I was put on Propranolol (I think it was 80mg a day) and had CBT (Cognitive behavioral therapy). A few days after starting the Propranolol I couldn’t believe what happened, my 24/7 dizziness had started to stop!
June - August. This is where I got very lucky. While having my first CBT session I was explain my symptoms to the therapist, to which she replied she had a colleague that was suffering something similar and invited her into a later session. She said she was seeing Dr Surenthiran and that I needed to see him.
August 2019. I booked my first appointment with Dr Surenthiran and after seeing him felt like the world had been lifted off my shoulders. I was diagnosed properly for the first time with Migraine Variant Balance Disorder, his way of saying MAV. I was told to start the 6 C’s diet, to start on Nortriptyline and stop the Propranolol and to take Magnesium, CoQ10 and B2 supplements.
October 2019 I had worked up to 50mg of nortriptyline (10mg at a time) with no signs of it working and now starting to get the side effects of being really angry (a big warning to stop immediately when taking this drug). I worked down to 30mg when it suddenly started working with the side effects going completely. It was at this point I started to become numb / emotionless from the drug (my wife calls me a zombie), but I didn’t care as the attacks had now started to subside, only happening once a month and the 24/7 dizziness disappearing.
Jan 2020 I had another appointment with Dr S, I wanted to talk to him regarding going on the Keto diet as I had read many good things about this, to help get rid of the last of the attacks and odd dizziness I would get during the night and day. This is where I lost my faith in him sadly. He told me to start Candesartan as well as the Nortriptyline I was currently on and just dismissed the Keto diet and told me it would help get over this last bit of dizziness.
I’m not against medication, but I just didn’t want to be put on more drugs. I got as far as buying the Candesartan from the pharmacist looking at it in my hand with a glass of water and then throwing it all in the bin. This is where I wanted to start the Keto diet and my god did it change everything!
March - Oct 2020. As I was seeing Dr S privately I decided I would rather spend my money on a nutritionist and do the Keto diet properly. I was recommended someone called Rosie Weston. (To this day this was the best decision I had made). I was told to stop all the supplements I was taking and to start one called Dolovent and I introduced the Keto diet slowly to minimise any “Keto flu” and was told to stop eating gluten. To show how well this diet worked for me, since March until now I have had 3 attacks, 2 because I ate a lot of carbs on that day and 1 because of stress. The 24/7 dizziness has disappeared, only showing on random days.
I also quit my stressful job as a construction manager during lockdown (completely crazy I know) and went back to being a carpenter for myself, now with no stress whatsoever and now only work 3 weeks a month.
I also mostly stopped the 6 C diet and reintroduced many foods. I can now have cheese (I have about 75-100g a day on the keto diet), I have cocoa powder and have eaten 100% chocolate (good quality). I make myself chocolate brownies and also my own ginger beer.
It was also during this point I learn’t to accept the dizziness as part of me and that it wouldn’t be going away whatever happened. This definitely made a difference on the days I did feel bad and helped the recovery.
Nov 2020. On 17th I had my first big attack of the year, it was a big shock and knocked me out for 3 days, being completely bed bound. My 24/7 dizziness is back and right now I don’t care how long it is here for. I almost say good morning to it when I wake up and just accept it and get on with my day. This for me is the best way to get over it quickly and just completely ignore it. For me stress is a big part of the cause of the migraines so why cause it over worrying?
I am now working to find the root cause of the migraines and hopefully plan to come off the medication in the new year.
There is probably a lot I have forgotten but I hope this has been somewhat helpful.
First acute balance issues:
Any suspicious physical event/trauma leading up to dizziness:
anxious flyer/being on holiday and getting married a possible cause
Start of chronic phase:
Age at chronic onset:
Number & type of consultants seen to date:
Neurologist, Balance Specialist, GP, Nutritionist
Diagnoses received (one I’m “running with” first):
Migraine variant balance disorder
Medications used successfully for MAV:
Failed medications for MAV:
Propranolol (although this was successful at first)
Non-pharmalogical treatment tried which helped:
Magnesium, CoQ10, B2, Dolovent
Dietary triggers identified: .
Milk, nuts, gluten
Any hearing loss in either ear:
Deaf in left ear since birth
Persistent or intermittent tinnitus and character:
I have suffered with tinnitus all my life, but did get worse when I was suffering in 2018/2019
Any personal history of migraines:
suffered as a teenager
Any family history of migraines:
Any history of ear problems:
4 operations between 2-13 to correct hearing but failed.
How did friends, family, and doctors react to your symptoms?:
Doctors hadn’t a clue what was wrong with me!