Lieke’s journey of a Vestibular disorder.

Tania Stadsbader – author Dizzy Me
February 2 at 5:06am ·

Lieke – The Grandma Thing
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Voor Nederlands scroll.

My name is “Lieke”, I am 36 and have two little boys of 3 and 5 years old. Before I became disabled, I ran a drugstore.

Full ears

I was 33, it was 2 weeks before shop transformation, suddenly I experienced full ears at both sides. I went to see my GP, who told me both ears were ‘clean’.

In that period, my assistent was sick, so transformation was my full responsibility and I felt a lot of pressure!

The evening before start of that shop transformation I got terrible nausea and got dizzy, with high pressure in both ears; I crawled on the stairs up to my room to lay myself down in bed.
I got sudden vertigo and lost control over my muscles. I felt do sick and worried ‘what to do the next day…’ It lasted for hours and I was so scared I wouldn’t make the next day.

When I finally woke up the next morning, I was very unstable and sensitive to noise. I noticed my right ear lost hearing.

That first week I simply went back to work, although I was very unstable and dizzy. Lucky me I only had to start at 16.00. After that week I called in sick and stayed home; I got more attacks. Probably due to stress I thought…

The Grandma thing?

I made an appointment at the GP. I asked him if this could be Ménière’s Disease. My grandma suffered from Ménière’s Disease. ‘That’s possible’, he said, but this was a case for ENT. So he sent me to the ENT.

The ENT planned an MRI. Results were OK. So his conclusion was Ménière’s Disease. In the meantime I have had several attacks. ‘Learn to live with it and forget that fulltime job’, I was told. I was sent home with a brochure. But I had already read a lot about Ménière’s and was well informed, so I asked him to get an urgency referral for Maastricht. His response was negative. ‘That won’t be necessary’, he said.

Dizzying damage

In Maastricht I was examined thoroughly by doctor Van de Berg who confirmed me to have a problem with both vestibular organs. Since I had 4 attacks a week, he wanted to carry out as soon as possible the caloric tests with warm and cold water, so he could see what treatment I needed. I didn’t realize Ménière’s Disease could ‘damage’ my ears?

On the list

It was December 7, 2013 when I heard both vestibular organs were seriously damaged. My right ear almost completely damaged. Left ear minimal functioning. So that explained the trouble with walking, the nausea, the daily struggle with eyes and ears and the tinnitus. The only thing he could do was to put me on the list for a vestibular implant and prescribe me some medication.
(Note from Tania: Lieke was suggested to be a potential candidate for a vestibular implant, but the implant research is making slow progress and is mainly being tested on patients with total loss of balance, so this option for her is quite surprising).

VM on top of it

A few months later I even had more symptoms. His conclusion was I got Vestibular Migraine too, probably the result of the damage in my ears.
(Note from Tania: it is indeed possible that patients suffer from both diseases, but the doctors’ explanation that VM is a result of the Ménière damage is incorrect; VM is not an ear problem although it causes vertigo similar to positional vertigo like BPPV, or Ménière’s, both finding its cause in the ear).

We are 2,5 years later: the Ménière’s Disease is stable (note from Tania: Lieke mentions tips and the Utermöhlen spectacles at the end of this story).
The neurologist prescribed good medication for the Vestibular Migraine (4 x 4 mg candesartan) and I still take (9 x 16 mg) bethahistamine a day.

But I must say I had to give up my carreer to get better. I still experience slight symptoms every day but I can walk straight again thanks to the excercises and pushing boundaries. Each day I need a few hours of sleep, but my condition is much better than before.

Verony Manders’ tips helped me a lot, and my Utermöhlen spectacles. Great support!

I try to live a normal life and to enjoy the small things.

Lieke
– The Netherlands

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