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Vestibular Migraine Survival Guide 2014


#58

Thank you so much for this article and also for this website.
I have had VM for four years now and have only been correctly diagnosed for a few months, in this time I have lost the job I love in palliative care through absences from work. I was beginning to honestly think my life was not worth living and no one seemed to understand how horrible the symptoms can be. I never associated VM with my hearing loss, vertigo and terrible nausea.
However since seeing a lovely ENT specialist, I have been correctly diagnosed. I had kept a diary of my symptoms and so he could see that they came in clusters. He asked me to take all the trigger foods out of my diet and introduce one each week, well, I did really well for a couple of weeks and then tried to introduce chocolate back, the effect was immediate and I woke up the next day with the horrible symptoms back again!!! which have lasted nearly a week now in one form or another, after the initial vertigo and nausea,’ jelly’ legs, joint pains and a overwhelming fatigue.
However, after finding this website and especially this article, I have realised that if I eat a healthy diet and miss out the trigger foods, cut down on stress, then I can get my life back on track, I have read this article many times since I first discovered it and I must say that I am so grateful to you, it has been a real lifeline for me and when I do get discouraged I read it again !
I am determined to use the knowledge in this article to get better.
Thank you so much.
Debbie x


#59

Thanks for sharing this survival guide. As you stated there is a lot of misinformation on the Internet on this subject. I have bookmarked this page and will refer to it regularly to help with treating myself.


#60

I haven’t posted on here in a couple years because I was feeling “OK”. But now I’m getting worse again. I’m not really following the diet and have been of Verapamil for a few years. I am going to attempt the diet modification and I was wondering if Almond milk is considered acceptable? If we are not supposed to consume nuts then maybe this is a bad idea? It’s something that I have been using almost daily.


#61

Hi @leshurd - I’m so sorry to hear that! What a disappointment. I do hope it’s short-lived. According to the snazzy Migraine Checker app, almond milk is a migraine trigger. I’d try omitting that (rice milk isn’t a trigger and tastes quite similar) and see if it helps. Do hope you feel better.


#62

Great post. I can relate to this. 8 months ago I went surfing in the morning extremely hungover. After feeling weirder than normal out in the water I began to get freaked out because this was not an ordinary hangover. Out of no where, bang, it felt like I was hit by a flash bang grendade and my face heated up and I felt like I was going to faint. This feeling lasted all day. Worst feeling in my life. I tried to drink water and calm down nothing worked. The next day I woke up normal but upon working out 3 days later the same feeling came back. I was dizzy, lightheaded and freaked out. This lead to a lot of anxiety because I had no idea what was going on. At first I could not leave the house because the light from the sun was terrible on my eyes. Over time the symptoms wore down but I am constantly in a fog and feel out of touch with my normal self. I have a lot of pressure in my head and neck pain. I am not an anxious person and do not stress over things. I have been to every single doctor and have not gotten a straight answer. It was mentioned it could be a vestibular migraine but never confirmed. This post has given me hope that it is indeed chronic migraines but no diet change or vitamins have done anything. Has anyone experienced anything like this?


#63

Hey there, Yeah that sounds almost exactly how my first episode hit - I was just doing something normal (maybe I had more stress than day that normal) all of a sudden I felt woozy, out of it and like I was going to fall over - of course I then panicked and it didn’t go away after that. I felt an out of body kind of floating feeling all the time and very dizzy and off balance. Strange head pressure too. Things have gotten MUCH better since starting supplements. Magnesium glycinate 400mg, coq10 (I’m experimenting with 300mg per day but was at 400mg before-does cause me to have some digestive issues so that’s why I’m trying a bit lower), 400mg B2, and at least 75mg of Petadolex butterbur. The last one there - butterbur seems to be the critical thing for me. I was taking gabapetin 300 mg per day (100mg spaced out at three intervals since you have to take it frequently due to short half-life) but gabapentin hasn’t helped me as much as the supplements/butterbur to give me back my sense of normalcy/stillness/balance. I went riding this morning in heavy stormy weather only on these supplements and had actually had a soy latte too and was okay. I can’t believe it! hallelujah Anyway, I don’t want to count my chickens before they hatch and will see how I do in the next few days on these supplements. The key thing for me to seems to be avoiding MSG in any form (natural flavors on labels often masks it) and maybe seeds/nuts and citrus. Not sure about the dietary stuff though. A neurologist can help with med trials to calm things down but I’ve had more luck with supplements and trying to see what foods make things worse. I’m VERY med sensitive and meds would always make me feel not really like myself. Sometimes they are necessary evils though xx

(NB from admin: this image links to a product this member has found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)


#64

I wish I had seen this when this all started for me a year and a half ago. This article is fabulous and really lays it all out. Great job.


#65

Thanks for this great survival guide. Can you help me access the articles you reference? When I click on the link I get a message that says “Oops that page doesn’t exist or is private.” Thanks for your help!


#66

Can’t find the first one, but here is the second: https://www.docdroid.net/gS9XzYd/hart-dizziness-and-vertigo.pdf.html


#67
  Try this link for the Survival Guide.   http://www.mvertigo.org/t/vestibular-migraine-survival-guide-2014/2244  (vertigotalesandtastes.blogspot.com)

#68

This is the link for the Survival Guide. Good luck Vestibular Migraine Survival Guide 2014
(vertigotalesandtastes.blogspot.com)


#69

I think @Hopeful was saying s/he couldn’t access the scientific research articles linked to in the Survival Guide that @scott posted, not the Survival Guide itself. I provided access to one of them; I’m going to ask my boss today if she can find the other one – she has access to way more scientific publications than I do through the library of her alma mater.


#70

Thank you @miggyko and @spinninggirl1 for your kind help. Jon is correct - I was able to access the survival guide but not the back up research articles. Thank you Jon for the one you sent. I appreciate your help, both of you!


#71

Thanks. Your right. I was not reading carefully.


#72

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!!


#73

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.


#74

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 - Vestibular Migraine Survival Guide 2014. 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.


#75

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 ( Introductory pin? ) 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


#76

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


#77

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