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Vestibular Migraine Survival Guide 2014

Thanks. Your right. I was not reading carefully.

Ok, I went through Fordham Univ’s library, Columbia’s library, and NYU’s as well, and I can’t find the first article. We might need someone with access to an Australian’s university’s library system. Sorry!!

Scott - I just want to say Thank You for creating this site. After many months of seeing several doctors with very little answer from them, your site and its contributors has by far been the most beneficial to me in managing my MAV. Specifically the dietary suggestions (super helpful) as well as the natural remedies. With dietary restriction, magnesium and CoQ10 I’m nearly dizzy free. I agree with other contributors that I believe I will see continued improvement over time and may eventually be completely symptom free. For now, it is has been a long journey of trial and error combined with significant lifestyle changes but it is worth it to me to find ways to manage my dizziness and lead a new “normal” life. Thank you everyone for sharing your insights.

https://www.mvertigo.org/t/maladio-vm-survey-now-open/14943

Hi Scott and Terry,
I just wanted to express my gratitude for the invaluable resource on VM which you have shared with sufferers here on the forum. I shared the link and further comments with a fellow member called Andy Hickey who has in the last day or so, created a VM Survey. Please see below.
Warm Regards, Emma:

Andy, I was happy to help. I’ve just noticed that your survey is now ready to complete, I’ll do that in a mo…VM is surprisingly nuanced! From the internet research I’ve done, I appreciated this but this article by a fellow member called ‘Scott’ only deepened my knowledge - https://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244. It is a fantastic resource as it proves the wide ranging effect VM has and the numerous ways it can present and justifies for me personally why I have had certain ongoing symptoms for a number of years, which weren’t referred to by the Neurologist who diagnosed me in Dec. 2016. Yet, simultaneously, it also highlights the characteristics it shares with so many other neurological conditions which explains why so many sufferers have been initially misdiagnosed.

Thank you Emma,
The Survival Guide is a really helpful document. I think it’s an ideal way to inform yourself about the condition.
@flutters posted a message today ( https://www.mvertigo.org/t/introductory-pin/14960 ) about a more organised entry point for new people to provide them with a more structured path to get informed about the condition. She was coming at this from the perspective of easing the repetitive nature of admins having to direct new members to the same resources, but it also might provide some comfort and some hand-holing for people at the start when they’re at their most desperate and confused.
I’m sure Scott’s document and perhaps the results of my study might also be useful in this role in some way.
I think flutters’ idea has got merit, so I hope it’s the source of more discussion.
Andy

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A post was merged into an existing topic: Survey - Be part of the solution

8 posts were merged into an existing topic: Introductory pin?

This information was incredibly helpful!! Thank you so much! I printed everything off for my doctor.

Hi, I have been going through the same thing and wanted to know how you are doing now and any changes you have made for the better?

Thank you!

In 2011 I Googled my symptoms in various orders, and I FINALLY came up with an atypical symptom list for Celiac…I got the testing and it turned out that I have Celiac… I only get dizzy now IF I dont’ sleep well, eat too much salt, or drink way too much caffeine…OR get glutened! I’d encourage anyone to get the lab work for celiac… it’s a simple panel. Much luck!

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What dosage do you take? I got some sublingual b12 from the store (5,000mcg pills was their max) as that’s easier than going to doctor’s for a shot though I’m open to it. I don’t have a depleted level of b12 I’m just trying to find something to help with the fatigue.

Hello @ni_sm, that user (Marka) posted in 2010. It’s not likely that he’s still here on this forum. People seem to stay a couple of years, or until they get better, then they move on.

Someone else may be able to answer your question, though, so it never hurts to ask!

Anyone try Niacinamide 500mg? I had a very good doctor just tell me to try it. Supposedly gets rid of the anxiety and brain fog naturally.

This Vestibular Migraine Survival Guide is amazing! What an impressive, useful and thorough piece of work. Thankyou soooo much!

:sob: I’ve gone off coffee but I found Twinings Extra Strength tea which is probably just as bad… I thoroughly endorse Vitamin B2 and magnesium. I think they helped me enormously

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That was a pretty crazy and non-sensical thing to do. Eliminate Caffeine!! :tea: :gun:

Please look at the large range of decaffeinated tea and drinks we have in the recommended products section.

There’s a table here showing the relative caffeine levels in different drinks.

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Wow, this is amazing! Thank you for taking the time to type and share all that useful info with us all! :+1:

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Agree it is a fantastic read. That is why i think a link to this guide should be added to the Welcome Wiki so all newbies can benefit from it.

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Funny you should mention that, I added a link earlier today :slight_smile:

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Hehe … yes! pushing the boundaries with a cup of tea. I live so dangerously these days :slight_smile: But I did have a look at the range of decaf teas you gave me the link to (thankyou) and I have tried quite a few of them. Except for Rooibos (and Peppermint I suppose) most of them have such a mild taste I may as well be drinking hot water. I contacted Twinings and asked exactly how much caffeine was in their Extra Strength tea and after a fob off and another go at it I finally got a decent answer. “Our English Breakfast and Extra Strong English Breakfast contain the same levels of caffeine. This equates to 50mg of caffeine per 200ml of brewed tea. Our Extra Strong English Breakfast does not contain tea leaves that carry extra caffeine, the blend is simply made up of stronger tasting black teas.” So that was good news. I really thought it had double the caffeine the way it tastes. I’m carefully monitoring what I can allow myself, believe me. I haven’t had a serious vertigo attack since Nov 2016 and there’s been quite a few cups of caffeinated tea under the bridge since then. I absolutely steer clear of proper coffee or alcohol though. Sometimes I’ve wondered if its something else in the coffee that upsets me and maybe not the caffeine at all. When I used to get bad migraines, cups of tea and proper coffee were helpful.

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That’s the caffeine. Many general drugs like those for flu.cold remedies have added on caffeine to help with absorption. All designed to add to the confusion! Helen