I am sharing my experience with fellow sufferers of this misunderstood condition because of how it took close to a year before a proper diagnosis was obtained after undergoing many tests, how frustrating and depressing it was prior to that not knowing what was actually happening to me, and for having people closest to me utter these words:
“It’s all in your head.”
“You need to manage your stress levels.”
“You have anxiety.”
And “Perhaps a good vacation is needed as you may be dealing with a lot of stress at work.”
It all began when I had been on the road for several hours as a passenger, while my husband drove us long distance. We were visiting an ailing family member, who passed on the third day of our visit.
The night we returned, lacking sleep and having skipped meals, loaded high on caffeine, I laid on my bed close to 2am and woke up at 3am with a sudden feeling – not a complete dizziness but an uncontrolled movement like that of being in a earthquake. I thought we were moving and the bed was rocking but when I stood up and began to walk, panic struck. I felt woozy and trembling, like someone who just had a very bad hangover.
After that night, and after many many rounds of tests, and while my husband did a lot of research since this was happening to me daily, he stumbled upon Jane Houghton* in the UK and we started emailing back and forth asking questions. She was so pleasant and, since my first episode I continued to use my journal to jot down all my symptoms and triggers, helped us put forth the notion that I am in fact suffering from MdDS to my neurologist. Tests came out negative for anything else except a very minor impairment of the c-vemp in my left ear that’s probably causing more of this type of imbalance.
That was all late 2012. Now in 2018, and after a minor stroke, i.e., a clot in my left parietal lobe, I am left even more weak and imbalanced having to recover post-stroke and to have MdDS co-existing.
I am on several medications including supplements to nourish the brain cells and circuits. I guess many of us resort to finding a form of relief one way or the other. For me ultimately, is to rejoice in the simplicity of life and thank God that I am still alive despite having to worry about having another stroke tomorrow or if I am able to get up the next morning without a level 5-6 MdDS.
One thing I’ve learnt from having MdDS is to not lose hope and find those (I call them my angels) whom you can trust to stay positive with you all the way, everyday, each step at a time. My greatest ‘gift’ is MdDS has made me stronger and taught me to learn to love another on a whole new extended level. And my greatest love is God and my husband.
This is a poem I had written while I was struggling with my daily episodes, and I hope some or most of you are able to relate. ~ Farzleen in Malaysia
Thank you and regards,
Farzleen F. Khan
Jane Houghton served on the MdDS Foundation board of directors from 2007–2016, providing invaluable service as our UK representative. Her video “Another view of MdDS” is one of the most viewed videos on our YouTube channel.