Sorry for asking here but many of you have searched a lot through the net. Does anyone read any article about neurotoxicity which can share? I have some thoughts about my condition and I am trying to get informed but its really difficult to find informations.
Have you tried searching this site for ‘neurotoxicity’? There’s even a reference from @flutters saying Topamax is essentially a neurotoxin. Also check out ‘’Mould’ and ‘Mold’ and maybe ‘Rhinitis’ too.
https://www.news-medical.net/health/What-is-Neurotoxicity.aspx
But also, Kon, your recent posts, if you’ll forgive me for saying, reflect Health Anxiety. I don’t blame you for feeling this way, I’ve had it (and some!). You need to accept your diagnosis and treatment for now and work towards coping and feeling better. You will improve!!
My latest theory is this all something benign to do with the ET and will improve over the very long term. That’s it. No inner ear scare, no stroke. Just some inflammation in the perfectly wrong part of the body where it is most sensitive.
Oh and PS if you don’t have tinnitus the whole time you are doing better than I was at your stage. My ear hasn’t stopped hissing for nearly 4 years.
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Yep. I was feeling too polite to ask what’s the matter with the MAV diagnosis. I should think Neurotoxicity is rather scraping the barrel in desperation. And I’ve given up suggesting @Kon tries some (screen) trigger avoidance. Still everybody needs a diagnosis in which they can believe, Helen
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They do and that’s partly the problem. The science is so vague. For now Kon you need to work on controlling the symptoms as best as possible and when your condition permits distract yourself with something beautiful like a walk with nature and or something very intellectually interesting. :).
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I know what you get about health anxiety and sure I have it. I am just concidering neurotoxicity because I was on a my room without good ventilation using an antimosquito for like non stop some days.(this liquid which works with electricity) sometimes I connected it with low liquid inside and the smell was intense af like burning plastic and the classic odor of the antimosquito. I am really concerned about this. I am trying to remember if I had it on that day and probably I had it. To be honest I searched a bit about neurotoxicity and the symptoms are so much and you cant really tell if this is the problem. I searched also about neurotoxic vestibulopathy and I have all the symptoms.
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The brain is pretty well protected. I would say its very unlikely but why don’t you raise it with you doctor next time you see them. Perhaps that will allow you to put your mind at rest.
There’s definitely something that’s ‘kicked this off’ but it might not be that.
Note there could be a BIG time-lag involved. The thing that cause my MAV happened 5 months before MAV finally hit me.
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I have so much anxiety now, I think I am gonna crazy its like a never ending nightmare everything I loved doing is now so difficult. I hope its not neurotoxicity for real. I am just thinking about it because this anti mosquito plus the weird smell of the pc, I may have destroyed my self.
And how similar are you symptoms to MAV, from what you’ve read here?
Its a bit similar but when this started and for about a month, sometimes now too I have tremors and twitching of muscles, difficulty to swallow, confusion and of course the eyes…
Tremors are probably migraine/neurological limit breaching. I used to call them ‘brain rumbles’.
Twitching of muscles, difficulty swallowing is anxiety. The latter happened to me in an anxiety attack. Twitching can be caused by Amitriptyline and other AD’s.
Confusion is migraine/neurological limit breaching
Eyes is compromised vestibular system (including brain).
All this is normal for a MAV sufferer, sadly.
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The tremors and the twitching/weakness and the swallowing problem were the ones of the first symptoms (flu like symptoms). Its difficult what to believe in current state. I have done so many things which could drive me here in this state. Just to note that the twitching was happenning prior ami. There are like 10 plus diseases/conditions which cause these problems and I am a good canditate for 5 of them.(watching my history)
Then if you must go for a second opinion, third, or fourth opinion. I went to see 4 doctors. But it’s not cheap to do that. Only the last one properly acknowledged my ear trauma and after him I resigned myself to my symptoms in the hope I’d slowly get better. And I did.
I have already 2 doctors telling me that its not from the antibiotic. I am feeling docs dont understand or they dont know what is going with me and they dont care to be honest. So to get a proper diagnosis is difficult.
Hi Kon, Essential Tremor is a very common neurological symptom of Migraine. You can find hundreds of citations on the web about it. I have tremor now also that I never had before. My neck muscles specifically feel as if they can’t hold my head up and it surely must weigh 30lbs lol! 
All of the symptoms you list are common to VM. I couldn’t agree more with the advice of James and Helen, the clear path to healing is accepting your diagnosis and working toward the goal of healing.Healing the mind is the first hurdle we have… heal the mind (acceptance and determination) then you can begin healing the body.
I may be an oddball case, but when I got my diagnosis after a year of suffering, I embraced it wholeheartedly. Finally something I could work toward!
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Hello @Naejohn . I get what you say about the neck, I feel like when I am nit on meds that my left hand and neck trembles a lot. I read about neuritoxicity and its very common plus the vision problems like oscillopsia. The only reason I am having a hard time to accept it is because, I was taking doxycycline, staying many hours on my room with no proper ventilation so I am scared that this is not a proper diagnosis. I get that VM has many of these symptoms but I am on meds and nothing helps a lot.
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Kon,
Neurotoxicity, like most chemical exposures, heals when you get away from the toxin. It might not heal completely but it doesn’t get worse once you’ve eliminated the source. The next doctor you see should be a therapist for your crippling anxiety. I’m not sure why so many people, particularly young males, insist it can’t be MAV, that it must be something more dire or rare. Believe me, MAV is plenty catastrophic. I think maybe not wanting it to be MAV is the bargaining phase of grief. You don’t really hope it’s something more dire but neither can you accept you’ve developed a long term neurological disability. Find a therapist who specializes in patients with chronic illness and spend time working on your anxiety and the underlying fear and grief at being hit with a disability as a young person. After that you can keep doing the rounds with medical doctors if you need to.
Emily
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@Kon, Have you found any credible sources stating Doxy is a Neorotoxin? I have searched many places for a long time for everything I put into my body since MAV struck but do not recall Doxy as being one of them.
@flutters as I said my life was really bad that period and for about a year, so I am looking for everything. Neurotoxicity can make long lasting problems. VM is better to be honest from all the things I am thinking. I cant think it also as a disability, if its a disability then there is no chance returning to normal, like a person who have damaged his back, he will never walk or run again and of course his life is very limited. Its difficult to accept it.
@Naejohn I searched about being ototoxic and I didnt find anything. About neurotoxicity I said it for anti mosquito and the weird odor from my pc.