I thought i would break my story up into different parts. Didn't wanna make it too long and tedious.
Where was I?
Anxiety. I was prescribed anti anxiety meds which didn't help. I remember being at a family reunion and feeling very sick the whole time. I would wake up with this horrible feeling that would stay with me all day. I can't explain it, but everything just felt wrong.
I found hope when i was referred to a balance clinic in hospital. I saw ENT doctors, audiologists and had loads of tests. Brain tumours and MS were ruled out when i had an MRI scan. The other tests were inconclusive though. The whole thing took almost a whole year. By the time all the tests were over, i still had no answers. I suspected MAV, but this was always dismissed by my audiologist.
The audiologist taught me Vestibular Rehab Therapy (VRT). I tried it for about a month, but it exhausted me, and wasn't getting me anywhere. I had got myself through my GCSEs and finally i was finished with school. That was a relief, but i still didn't have the energy to fit the VRT into my daily life. It didn't work anyway.
My audiologist gave me advice on how to stay in control and manage my symptoms. I told her i needed to see a neurologist because i knew that it was MAV by now. I had done a lot of research and i was quite sure. But she told me that she didn't see the point. This really frustrated me. She obviously had no empathy and understanding towards her clients. How could someone working in a job like that be so blind? I didn't really see her again after that, she told me she had done all she could to help me.
For about the next 5 months, i was shoved around the ENT department, and they would not listen to me! I knew that there was no point me being there because the problem wasn't my vestibular system. I guess doctors don't like it when patients self diagnose. But what was i supposed to do? I had to live with this every single day, and they expected me to just sit back and do nothing. I couldn't do that. I had to try.
Finally, i got referred to a neurologist, and got diagnosed with MAV pretty much straight away. I can't explain how i felt... After all those years, to finally get my diagnosis, it was such a relief.
Tasmin! I am SO glad you created this page. I have wanted to do the same myself and have wanted to create more awareness of this disorder myself. Reading your blog, was so touching to me, it was honestly like reading the story of my life. Sounds EXACTLY the same. I had symptoms that started when I was about 12 years old - fatigue and diagnosed with migraines. From there on out my symptoms increased until about 3 years ago or more, I can't even remember now, everything went completely out of control. Now everything in my life is a wreck and I barely know what's going on. You are a very good writer and very good at explaining about the Vestibular Disorders and the problems it creates. I will definitely share this with others! Thanks so much for making this for people. You are a very special and wonderful person!
ReplyDelete--Stace.
Hi Tasmin,
ReplyDeleteas Stace pointed out, my story feels EXACTLY the same as well. My Doc suspects its MAV but he isnt sure. I do not have a diagnosis since the last 2 years. It feels so frustrating, I feel dizzy every minute of my life.
Though the severe bouts of Vertigo had stopped bothering me after the first 6 months or so.
Any form of caffeine triggers my dizziness/vertigo rightaway. Even the smell of coffee is disturbing for me. Is it the case with you? Please let me know, as it can help with my diagnosis. Plus, bright lights also trigger my dizziness in places such as supermarkets.
Thanks!
N
Tamsin, sorry I had lost this blog for a little while. I reformatted my computer so my book marks dissapeared. I found your link though because I posted it on that FB page I made.
ReplyDeleteI feel off 24/7 like everything is a weird/bad bizarre dream. I haven't had coffee in over 3 years, and finally I don't crave it anymore. It was hard letting go, but as you said, even just smelling it makes me feel off. When I had it it made my brain tell me I was dying and felt like I was on some kind of awful acid trip that went wrong. Bright lights are the worst for me. If I could hide in a dark room I would. Have you been diagnosed since then? Sorry it took so long to respond.
Hope this helped!
--Stace.