I’ve been having a really difficult time dealing with a diagnosis of MAV. A quick background: I’m 23, and have been experiencing the following symptoms for 7 months now:
- Disequilibrium exacerbated by movement
- High pitch tinnitus in both ears, predominantly in the left
- Ear pressure in my left ear that was initially there constantly, but now is only felt when I move my head up-and-down or side-to-side
- Pulsating sensations in left ear
- Clicking in ears when running
- A very slight feeling of my eyes pointing in different directions sometimes
- Fatigue, brain fog, poor concentration
- Depression and anxiety
These are my only symptoms - I very rarely get headaches, but have had two episodes of migraine headaches with aura in the past. Initially I was incredibly worried that I had early onset Meniere’s due to my ear issues mainly occurring on the left, but a vEMP test revealed abnormalities in my right ear which, along with my bilateral tinnitus, is apparently more indicative of MAV.
I’m doing everything that I can practically: I’ve been put on 10mg amitriptyline which doesn’t seem to have done much other than make me feel sedated. I increased this to 20mg last week. I’m taking magnesium, co-Q10 and turmeric, and plan to add riboflavin, feverfew, ginger and vitamin D on the off-chance that they make a difference. I’m on an elimination diet and have cut out everything recommended in ‘Heal Your Headache’. I’ve also eliminated gluten, dairy, and have reduced sugar and salt. I’m trying my best to stay on top of sleep and stress, and exercise regularly.
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I’m not entirely sure what I’m looking for on here, but know that I could do with some emotional support. I’m in the final year of an Oxford degree and finding it incredibly difficult to manage this condition and the way it’s making me feel. This illness has already affected my life in a number of ways: my social circle is shrinking, my relationships with my parents and boyfriend are suffering, my grades are slipping, I find it difficult to leave my room, I’m sick of being on a highly restricted diet, and my anxiety and depression are terrible. I’m unable to afford private treatment or therapy so I’m dealing with painfully slow NHS waiting lists. Above all else, I’m really struggling with the idea that this isn’t going to change; that all of the medications I try are going to fail, or even worse, that it may get worse or turn out to be Meniere’s after all. It’s so difficult for me to accept that my life might be dramatically limited by this whilst watching friends planning and beginning successful careers. A cruel irony of this all is that I was planning on studying graduate entry medicine and specialising in Neurology, and if things stay the way they are, this isn’t going to be possible.
I’m sorry that this is so negative, but it’s so exhausting trying to maintain an optimistic outlook after 7 months of suffering. I was so careful with my health before this started which makes it all the more frustrating. I just want to have my life back. If anyone has any encouraging words, I could really do with them.