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Teenage MAV sufferer from India seeks help with relapse


#21

Hi Get Better,

Thanks for your quick reply. She has tried Flunarizine ( Sibellium) before and it did not work at all, as I mentioned upthread. May I ask the name of your neuro oto in Chennai? I am in Bangalore. Not opposed to yoga but first we need to get to at least 50% improvement.

Manatee, We are slowly working our way down Dr Timothy Hains flowchart, thank you. Tried propalanol, sodium valcorate, flunarizine so far. Ami is second on the list. She was on 30 mg for two weeks but it just knocked her out.


#22

Doctors here are v reluctant to go above 25 mg of Ami as she is v slight of build. I am told dosages specified are for older people of a heavier build.


#23

Sent you a private nessage.


#24

Hi again. Sorry you’ve not been able to progress your daughter’s case much as yet. Medics in many places, UK included are Rubbish - with a Capital ‘R’ when it comes to managing MAV. They just don’t have ANY understanding of it, not 95% of them anyway,

Oh yes. There’s all manner if ‘theories’ about Yoga, Tai Chi and Alexander Technique and balance. I’ve done the last two extensively and sure they help improve balance and coordination but the person doing them needs to have their natural balance (which a person with MAV often doesn’t) before they start or, as you say,it will make them ten times worse not better.

I know you are using Dr Hain’s website but wondered if the appended might be of any assistance.

http://dizziness-and-balance.com/disorders/central/migraine/migraine_children.html

Wishing you all the best with your search. Helen


#25

Hi @Journeywoman, I am so sorry to hear of your daughters struggles! It’s hard enough being a teenager without this MAV beast making life so much harder.
I am a relative “newbie” to MAV. Been chronic for just over a year and my diagnosis came 11 1/2 months into the beast. My first and only medication is Ami. I began with 10mg, working my way up in 10mg leaps weekly to my current dosage of 50mg. I have tolerated it very well, and I am one of those people that couldn’t take a baby dosage of sinus medication without feeling awful, so I am very med intolerant.
I am now 6 weeks in on my suggested dose of 50mg and doing quite well comparatively! My understanding is that we just cannot predict the “sweet spot” dosage for each of us as individuals. The dosage will always vary. For instance, I am an intolerant female and my “sweet spot” is 50mg… however @turnitaround found relief at 20mg of Ami. It could be that your daughter has simply not reached the dosage that is right for her. My sister in law who has had MAV for about 10 years is at 100mg of Ami.
I do hope that you can find the answers you are needing… it is the most frustrating (putting it lightly) condition without much medical support. We all can commiserate and wish your daughter the very best!