I have been following this forum for about 3 years now, waiting to post something about my journey through this crippling condition once I feel firmly on the path to recovery. Today, I can honestly say that I do! So here is what happened to me and how I got better: (by the way, I am a 33 year old caucasian woman - my story might be especially interesting to other women)
My first true vertigo episode (violent spinning accompanied by vomiting) took place in summer 2016 following an early miscarriage. I had never suffered from migraine headaches or vertigo (or much else really) before and to this day headaches have been largely absent, so it took a long time for me to think the MAV diagnosis was correct. I was extremely stressed during the time of my first miscarriage and got the first bout in the morning before being due into hospital for a surgical procedure to clear things out. It turned out I didn’t need the surgery and being as joyous as i was about that i thought the dizziness would go away on its own. It didn’t. I felt spaced out, unstable on my feet and developed noticeable visual vertigo (vibrating straight lines, light sensitivity etc). GP said it was a stress reaction and to wait. I remember at the time doing a lot of walking as it felt better to be moving than stationary. During the next months I then got more true vertigo out of the blue one morning and ended up having tests through ambulatory care. A brain MRI showed lesions on the white matter. I had a horrific lumbar puncture to investigate for MS and told I ‘did not currently meet the diagnostic criteria for MS’. The consultant was a total d**k and I can’t tell you how stressful the whole experience was. Anyway, I tried to put MS out of my mind and again the extreme symptoms sort of calmed down a bit.
Things weren’t so terrible and I didn’t change my lifestyle, just waited. I felt off balance most of the time and like something just wasn’t right, but couldn’t explain it. I got married the following summer and was able to enjoy my day, thank god. We went on honeymoon a day after and it was quite a fast pace tour. I got a strong bout after a day of cancelled flights, drinking and a very very early start. At the airport on arrival I felt my stomach drop and like my whole system was just shutting down. I felt huge anxiety and thought I was just having a panic attack. When we got in the rental car I felt a bit better (weirdly, moving in the car felt better). We stopped at a supermarket and I realised this was not ‘just anxiety’. Though I felt totally calm, I could only move very very slowly in the supermarket, turn very slowly and it felt visually too much. I slept for ages and it again took a few weeks to start feeling a bit more functional.
A few months later I got pregnant again. This time I didn’t miscarry until almost 12 weeks and was in hospital with very heavy bleeding. Things stabilized and I felt not too different than before. I was due to finish my job and start working for myself that September. On my last day I made the most stupid decision ever to go to a theme park with my friends (don’t ask me how, I now think I must just not have left so dizzy at the time). That night I went to A&E about 3 times as every time I closed my eyes I was back on the roller coaster and kept throwing up on my self. Again, I was given anti- dizziness pills which did nothing. A couple of days later I recovered and just felt wobbly. My husband and I were on a weekend away when my second period was due and had had a night on the tiles beforehand, so I would have been horribly hungover anyway. When my period arrived I got fever and then the worst MAV symptoms ever. I could barely open my eyes or take a few steps without feeling like I am bobbing on water and all my senses felt totally overwhelmed. I was treated for fever in hospital and sent away with some kind of anti dizziness meds which did absolutely nothing. I don’t know how I made it home, but when I did I was basically bed bound for about 3 weeks.
I’m not sure whether not having a full time job at that time made things better or worse, but I distinctly remember feeling like I could not have been able to sustain any kind of career at that time. As things continued I started having private investigations. An ENT diagnosed MAV after extensive tests on my ears/ balance. One neurologist said it had to do with my stiff neck muscles (by the way, this is a problem I know a lot of you report and I believe my neck issues started from when the vertigo first got really bad and I couldn’t even turn my head because that felt like too much motion). That neurologist prescribed anti epileptic drugs, which I didn’t want to take because of the side effects. Another neurologist said to try the classics and see which works (beta blockers, anti migraine, tricyclics). I tried an anti migraine one and it made me feel really weird on top of everything else, so I stopped. To be honest, I was very reluctant to take meds full stop and was hoping for an alternative solution.
Acupuncture provided very temporary relief, Chinese herbs did nothing. I continued to feel awful. No more true vertigo, but the bobbing and most of all feeling visually and audibly overstimulated, nauseaous retching, and only being able to do things very slowly if at all. I attended psychotherapy weekly during these years as I was a therapist in training and it didn’t really help with the symptoms. Though I noticed if I got very upset the symptoms would get worse. I also slept an awful lot to be able to get by. Alcohol provided very temporary relief but hangovers would make things ten times worse. Getting my extremely stiff neck massaged also made me more dizzy and feel weird. I decided after a while it was better to not have anyone touch me. In fact, the only thing that seemed to help at all was gentle yoga.
A few months later again I went to see my family abroad and the tinniest stress over a flight delay seemed to trigger me into the worst bout yet. I had to be wheeled out of the airport by special assistance wearing sunglasses because I felt so awful. I saw an endocrinologist while abroad who said my thyroid was a bit under active and to keep an eye on it. I didn’t make too much of it. It’s fair to say I felt so down at times I wished I could just end it all. I didn’t feel like I could have a life. I was ready to start trying all the different pills before someone told me to try a functional doctor. I found one in London who was medically trained as well as functional and she cost a total fortune. But I thought I’d bite the bullet and see. When I spoke to her on the phone she immediately said my thyroid needs treating and that she thinks we’ll be able to make things much better.
She did extensive testing and even though my thyroid was within the NHS norm as were the antibodies, she diagnosed Hashimotos. She prescribed 100mg thyroxine and 5mcg T3. Almost immediately I felt more lively and like I could manage some social events (I went to a wedding evening so that first day and my friends even commented how I seem more energetic). I also took a ton of supplements, had to change my diet, very much restrict the alcohol and try to be as stress free as possible. I barely travelled at all in 2018 and completely avoided fast trains, planes, long car rides, long walks etc and worked part time. It was still very up and down but the more I followed the functional doctor’s advice the better I gradually seemed to feel. Having a very restricted diet was especially challenging (no grains, no dairy, no sugar) but did seem to make a difference to my general well-being. I see on the forum that some people benefit from exercise, that was totally not the case for me. I once tried to ‘pull myself together’ and go for a little jog and had to call in sick as it made me feel so terrible. It didn’t help that whenever I walked slightly too much and stopped suddenly the world continued to move around me when I was stationary, which is horrible. I still get it now sometimes, but much milder and I don’t panic about it anymore. I try to go on at least one long walk a day so I’m getting some gentle exercise, but on the whole my fitness level is now really bad and I plan to gradually start introducing more exercise.
In general this year things started beginning to really look up and I have successfully done a couple of plane and train rides, having been so fearful of them. I still feel wobbly on my feet in very busy places and big supermarkets. The visual vertigo still hangs around but is much milder and generally doesn’t really bother me anymore (unless I’m looking at vertical stripes!). If I have not rested enough, overheated, drunk too much alcohol or got very stressed/ upset, there is usually a noticeable temporary deterioration, but on the whole things are manageable now and I feel much more in control and like I am leading a happy and fulfilled life. I have had another two miscarriages since, which have all been very early and didn’t have anywhere near the sort of impact as the previous. It’s funny that my fear of MAV far outweighed my upset over the miscarriages, that’s how awful this thing is! I am convinced that there is a strong link between my hormones and the MAV/ VM. Up until recently just being pre menstrual was enough to make me worse. I now lead a slower paced life, drink very little and generally eat very healthy. We also got a puppy last year, which, while being very hectic and challenging to start with, has done my mental health the world of good. I am still motion sensitive and try to avoid any unnecessary movement. I continue to follow the functional doctors guidelines and hope to get better still in time and my fertility issues are still under investigation.
I am fully aware that I am very lucky to have been able to work part time, not have dependents etc, and to scrape the money together for the very expensive alternative medical treatment. If you recognise your own experience in my story, then I would urge you, if you can, to seek a functional medicine practitioner (ideally someone with a conventional medical training too) and have your thyroid properly looked at. I would have fallen through the cracks in the NHS and taken strong drugs without really needing to. I feel like I’m getting away lightly with a synthetic hormone supplement, which admittedly I will probably have to take for the rest of my life, but which doesn’t have any side effects given the correct dosage.
If anyone would like to ask me anything or share any similar experiences, I would love to hear from you and my heart goes out to everyone unfortunate enough to have suffered from this. Thankfully there do appear to be lots of options, and mine is just one of them.