Vesties’ Village

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Diagnosis Challenges

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Joined: 1 month ago
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Wanted to pick the brains of people on this board. 6 years ago I caught a virus that damaged my vestibular nerve. Testing has confirmed that. Over the course of that year I recovered by taking an ssri and doing lots of VRT. A year after that I came off the ssri and my head and nervous system exploded. I recovered again by doing vrt and increasing the ssri. A year later, same thing happened but this time from a multi vitamin with a probiotic in it. I increased the ssri yet again and did vrt and recovered. At this point I was taking so much of an ssri I was tired all the time. I very slowly came off. Was totally fine for 2 years. Caught COVID, my vestibular system decompensated, my nervous system felt like it was on fire and now I’m back to doing VRT again. My physical therapist thinks I fall into all of the categories - vestibular weakness, PPPD and MAV. I don’t really know what my body is doing.  I can go from riding those terrible tea cups at Disney to having what feels like my whole body explode. I have had every test possible and they’re all normal, except the vestibular testing. That shows a weakness and nystagmus. I just feel like this unicorn so maybe I’m also just looking for someone who has had some similar experiences. I’m also going through some EMDR trauma therapy bc at this point I feel like my brain is for sure traumatized. 

Joined: 1 year ago
Posts: 9

Hi! Gosh I am so sorry. But I can say I can relate and you are not alone. Medically I cannot address anything but it does sound very reasonable what your therapist is saying. No matter the diagnosis everyone will experience their vestibular disorders differently and even then it can be different all the time! I have been sick for over 17 years with a few different diagnosis. When I first became ill it was constant vertigo. Now my days and weeks are all different. I can go days without being dizzy. Some days maybe just a little off, or just dizzy if I ride in a car. And then I can have a week that is just constant spinning. I don't have a lot of known triggers except for certain movements. Weather can be difficult for people and it may affect me at times. I think one of the hard things with vestibular disorders is that we have so little control over it. And that makes it extra frustrating. It is an invisible illness and people don't understand it. So it is really great when we can talk to others and know we are not alone in how we feel. If you are ever interested in connecting with others, we have some great support groups you can find listed on this site. They meet at different times and days. It is so nice to talk with others that really understand. Let me know if you have any other questions. I am so glad you reached out.