I’m now 80% recovered!

Success Stories & Positivity 🕊
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Hi there! : ) I don’t really post on here too much. I did when I first was diagnosed with MAV but I still read the threads once a month or so. MAV started for me in the first week of March 2019. It was a terrifying experience to the point that I’d never thought I would live a normal life again, work, drive, leave my house etc.

I took a prednisone taper paired with a very lose dose of Valium and also tried out my migraine meds which are a Indomethacin for a very short period of time. I totally stopped those within a couple of weeks and my neurologist said come back in two months, if you’re not getting better let’s talk, Ami, Nort and Amovig.

In that time period between appointments my husband and I decided to switch my focus a bit. Eat more gluten free, workout a lot, drink a ton of water, use CBT therapy, see a therapist and use hypnosis. I shocked my doctor when I went back, I was already 50% reduced in symptoms.

From June (that appointment) to now I’m about 80% better. I’ve seen my neuro since, I’m fact I have an appointment coming up in two weeks. I am driving again, going to stores (most with my hubby, depends on the lights), I’m working full time, spent all last week in Miami for my staff meeting and company holiday party which means I flew! Flying was something I was dreading and thought would never happen again. It ended up being a fantastic experience.

MAV took over my soul, sank me into a mode of constant panic and depression. I know I’m a rarity here and for most meds are key. There were many days I’d say screw this give me Ami, this is hard! I’m not sure if I’ll fully recover, if I’ll return back to full blown symptoms, if I’ll need meds at some point.

My life changed and it changed me as a person for the better. I know how hard it is to have an illness no one can see that seems impossible to describe and people don’t understand. If you step off meds and see no progress, take the meds. It’s worth having better days.

<3 <3

Renee

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Renee thanks for the update. Excellent news and something I wish more would share. Good luck with the other 20!!

I’m going to move this into its own Topic :). Done!

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This could be my story! Except for the 80% lol. My symptoms came on out of now where in March 2019. My mom has Ménière’s disease so I really thought it was just the beginning of that. For now, it’s VM. I’d love to know more about what you did. Will you share your diet and is CBT CBD oil? Thanks so much and I’m so happy you are doing better.

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@PrincessPoppy Are we twins??? Mine started chronically in March and since my mom has menieres we thought it was a variation of it.

@dizzydogmom so so happy for your progress!!!

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CBT Is a standard abbreviation for Cognitive Behavioural Therapy. It’s a Talking Therapy designed to help people think differently about their problems and therefore help them better cope with life. CBD is a component of cannabis. Stands for Cannabidiol.

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Thank you! I’m glad to share! : )

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Hiiii @PrincessPoppy! Mine didn’t exactly come out of no where. I had a panic attack on a vacation in Boston (not quite sure why, panic in itself is a tricky bugger!) Anyhow my GP put me on Zoloft which looking back now I don’t think I actually needed to be on. It gave me horrible side effects and he had me get off of it without tapering due to the short duration after only two weeks. Unfortunately I should have tapered. Something happened to my serotonin levels and I started walking like I was on a boat and it never stopped. My neurologist believes that it triggered a vestibular migraine that just didn’t want to go away. Thankfully I have been able to slowly recover. I know that for a lot of people there is a triggering event or it will literally just come out of no where. I’m so sorry you are going through this also!

CBT, Cognitive Behavioral Therapy is a form of therapy that people use to cope in several situations. There are several steps, depending on your need for it. I had severe and I mean SEVERE issues with panic and anxiety due to always being dizzy. My brain just couldn’t cope or process what was happening to me. Initially I had agoraphobia and didn’t want to leave my house. I hated how I felt and everything made me go into a state of sheer terror. I knew I couldn’t live like that because I love to travel, work, enjoy being social etc… The CBT I chose to do was very much exposure therapy. Ex. Get in my car, drive down the street, turn around, come home and do it again but longer every day. It helped me adjust to being dizzy all the time and learn to sit with my feelings and stay calm. My brain managed those feelings better and the panic and anxiety stopped. I still have some moments, I hate grocery stores alone because the lights, the shelves etc bother my eyes. But for the most part I’m feeling “almost normal”. Sorry for the long winded post I just wanted to explain a little more in detail. : )

Hugs- Renee

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That’s so awesome! I’m so happy that you are doing better!
@Diana21 I think we are twins! I would love to speak more since your mom has MD also. I know it’s genetic but you are the first person I have met her mom has it and now has issues! Do you have VM? I personally think I’m on the path to MD. I have all the same symptoms except hearing loss and I have a lot of ear issues. But, she never really had headaches. I don’t know. It’s so baffling and frustrating!

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My mom has had migraines since I can remember. Like memories is me and my brother playing quietly cause mom was down with a migraine and she couldn’t deal with light or loud noise.

I’ve migraine since 5 years ago, her menieres started 3 years ago, had a really rough year of constant episodes (3-4 times a week, lasting between 2-7 hours, rotational vertigo). She hasn’t had an episode since then (I’m knocking on wood so hard right now). She sometimes feel ear pressure but that’s about it.

In my case my symptoms resemble more of VM, obviously I freaked out at first when the swaying started because of my mom history but I never had true vertigo (and have only had it a few times only
Lasting for seconds or minutes) and my hearing is as perfect as it can be. The first ent was just clueless and wanted to get rid of me and my nagging and that’s when the “variation of menieres” assumption came but when I saw my neuro-ontologist his first words were “you don’t have menieres, that’s for sure”

I’m always scared that this could become menieres because of genes, I know how brutal that one can be at least compared to my own VM experience but only time will tell. I’ve learn to not stress too much about the future because that only makes my symptoms worse

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Great News Renee that you found what works to keep your MAV under control. I haven’t posted in a while either since I have been super busy returning to work full time and I have to say my MAV is about 90% under control due to omitting msg, gluten, aged cheese, alcohol, etc. pretty much the diet that is listed in the 123 headache book. I am able to get by without any medication if I stick with the diet, avoid the main triggers like bright lights, offensive chemical odors and sensitivity to the high trigger foods. I haven’t had vertigo in months. I still get a low grade migraine every now and then with some lightheadedness but no spinning. During the holidays some of my symptoms did return because of stress and some cheating with foods but I had to jump on things quickly to avoid a full blown MAV attack and get back on track. We all have to work hard to try and find out what will reduce symptoms. Its a life long problem but it can be managed especially with the help of this forum. Happy New Year!

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