Diagnosed with migrainous vestibulopathy

Sometimes more like 6 weeks and you donā€™t really know until you titrate up to an effective dose and then hold that 4-6 weeks. Med trials, like everything else about MAV, are a marathon.

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One of my biggest concerns is ā€œis this situation permanent or you are going eventually heal and go back again to your normal self?ā€

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Mileage varies. Most of us get better enough to be happy and thrive. Some heal completely. We have biologically unique migraine brains. That doesnā€™t change. We change how we approach life to work with what we have.

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Yes @Onandon03. That was supposed to be a ā€œwasnā€™tā€ ā€¦brain is working at a minimum today lol

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The weird thing is that I wasnt so sensitive with motion stuff or lights or anything. The only prob I had was some loud sounds on concerts lol (you know when you hear it you get a dizzy spell for like 3 secs). My doc mentioned that MAV can be caused from pushing yourself a lot doing many things from lifting weights to trying to stay awake all night long (as I did).

That is some solid VM preventative treatment ! You can take the Ami at night along with the gabapentin if you feel sleepy during the day.

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Yep but look at it this way itā€™s likely to be the only Marathon Iā€™m ever likely to succeed in!

Letā€™s be kinder to ourselves, we donā€™t need to be so hard on ourselves. I was reading only last evening tricyclics can be expected to take 4-6 weeks on average to work for any condition. Thatā€™s somehow reassuring - we are not so far off being run of the mill as previously thought. Itā€™s the drugs fault, not ours or our MAV. Helen

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Yeah aftet two months of searching the neuro-otologist told me that I have VM and put me straight to these meds. While I was searching on the forum many people here started ami later not right away I dont know if this means anything. Somtimes ami makes me sleepy some times not to be honest. I have no idea why lol. Just to be sure MAV and VM is the same right?

Yes MAV and VM are the same

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As is Migraine Variant Balance Disorder. But you canā€™t use that or VM as a prefix. So you canā€™t use words like MAVericks (us) having MAVtastic days (put me out of my misery days) or just MAVy days (I can function, sort of).

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Random update
I went to neuro-oto yesterday he told me that he saw improvements since the last time (on the balance tests). He also saw that I have less nystagmus on the rotate chair. He said that the weird feeling on my eyes and the delay I have is cause of the CFS fluid which rises the pressure on the head. So I will continue my meds for a month amd a half and then go to see him again. I decreased minitran to the half and raised propanolol to 20mg.

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Great stuff, Kon, keep going!

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The ā€œfunnyā€ thing on this is, I am not feeling better at all since all started related to my eyes lol. I hope my eye sight gets better and my reflexes.

Anxiety. Helen

Never had a problem like this with anxiety if I understood your reply correctly.

The Anxiety about the uncertainty of it all is subconsciously stopping you feeling progress.

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I forgot to mention something. He told me that the ā€œrockingā€ sensation I may still have after some time is cause of my body muscles, he said exactly they need to be trained evenly you must not stay still while you are on the healing period.

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Exactly, always keep moving. Walk every day even if you puke.

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I tried to sleep for as long as I could because I wanted to have my eyes closed as long as I could. After 13 hours of ā€œsleepingā€ I woke up without headeache or dizziness until I opened my eyes. My eyes felt good without pain except from the wobbly vision when I move my head or my eyes like I am drunk and even worse. After an hour I started feeling pressure on my forehead, sinus and cheeckbones, inside my eyes from the noseā€™s part and a lot of dizziness plus of course a lot of anxiety. Is this normal for VM? This feels like a vestibular dysfunction to me and the problem is that you canā€™t be sure if this is the condition.

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We can speculate ā€˜for everā€™. Pretty much anything is normal for MAV. Could well be sleeping too long did it. MAV likes routine. Same every day. Thatā€™s why some people get migraine every week-end, due to having a lie-in. Helen

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