I haven’t posted here for 8 months, so thought I’d post an update
My life is now completely back to normal. I’m not on any medication or supplements. I’ve also been discharged from physiotherapy, as I dont need it anymore. I still experience a few very mild symptoms on a frequent basis, but they are mild enough that I simply dont notice them anymore. These are tingling in the bottom of my feet, dull headaches, super mild split second vertigo and gastritis / upper tract gas. I’m not 100%, but I’d say 99% and I think this is as good as it’ll ever get, and at this point I’m pretty content with that.
With supplements I was feeling 100% (zero symptoms) but I recently decided to ditch them all to see if my brain can continue its “re-programming” in a supplement free state. If I can’t reach 100%, I may resume magnesium glycinate (600mg) in future, as I found this to be the most potent supplement.
I wish I had a magic formula to share with everyone, but I’ll list below the key things which helped me:
Patience. It’s important to realize and accept that healing from this can take years
Acceptance. Many people don’t want to hear this, but you have to mentally accept, that it may not be feasible to ever be 100% again. But you can be very, very close. To help me accept, I just reminded myself that after a certain age everyone has ailment’s these days. Just so, happens that mine is MAV. Remind yourself every single day, that it can be ALOT worse than MAV. People have no limbs, are deaf and blind, paralysis, terminal illness. Count yourself lucky.
Avoidance behaviour. This must be completely eliminated. To do this I kept pushing myself deliberately into anxiety-inducing situations, no matter how painful or fearful it was
Diet. Cleaned this up and started eating super clean. Minimal alcohol, no caffiene, no junk food. I am not a believer in fad migraine diets. I found migraine diets very unhealthy and unsustainable.
Weight loss. My weight had crept up quite sharply due to this condition. I managed to lose 15kg, which I felt greatly helped my symptoms
Positive mindset. I’m naturally quite a pessimistic person, so this was quite tough for me. I tried to remain positive by practicing gratitude. The more you feel sorry for yourself, the more you spiral into a dark hole. There is countless research indicating that people who naturally suffer more from mental health issues, are more prone to vestibular disorders / migraine. Same goes for obesity
Exercise. The real turning point for me came when I started hardcore exercising. I went for a 1.5 hour walk every day for around 4 months. Started to find that all my balance issues, blurry/fuzzy vision, dizziness and motion/vertigo issues began to dissipated and eventually went completely.
Supplements. Magnesium Glycinate (600mg), Coq10 (300mg), Vitamin B2 (400mg), Vitamin D (4000ui), Vitamin C & Zinc (1000mg).
De-stress. It is crucial to de-stress life as much as possible. This is different for different people, but I socialised less, sold my car for a while, worked self-employed, avoided focusing on any big ticket life items like housing or relationships. Just kept life simple.
Physiotherapy. Now, I didn’t find physiotherapy very helpful physically. But it was helpful mentally, because it gave me a sense of purpose and feeling that im heading in the right direction, light at the end of the tunnel etc. So its definitely worth giving it a shot, but dont get too hyper-focused on the idea of a physiotherapist on saving your life. With this condition, you need to be your own doctor.
If anyone has any further questions, please feel free to message me. More than happy to help any fellow sufferers in any way I can.
I particularly agree with the following: lack of avoidance behaviour, exercise, positive mindset (also determination to improve), basic changes to diet (caffeine elimination, alcohol reduction/elimination), de-stress and try not to over-react to symptoms and take them in your stride.
Before asking potentially unnecessary questions like that though, please use the structure of the forum and check you can’t find that information first if it has already been provided rather than asking someone to repeat themselves.
Indeed I’ve moved the rest of your post to a new intro topic there so you have a dedicated topic to discuss your issues and not add noise here. It’s best to ask advice from all users just in case someone doesn’t get back to you. @ak90 is more than welcome to respond to you there too.
You may also find the OP’s in #personal-diaries very useful. Some users create diaries.
Basically avoiding anything that could trigger me. I was so poorly when all this hit for me 3 years ago and it was under very traumatic circumstances. I got into a habit of avoiding anything that might put me back there. Getting better at it now - I went paddle boarding a few weeks ago and wouldn’t have even contemplated that even 6 months ago! Super proud of myself!
Congratulations! I’m so happy for you. I wish you are still better and I hope you will get to the 100% normal state soon. What were your symptoms? Was the trampoline walking sensation one of your symptoms?
Go and enjoy your life again! 