Im new here, pretty sure I have MAV. pls help

Hi everyone,

I have been browsing this forum for a while and decided to post on here my situation. First I am a 27 year old mom of 3 kids. I have been dizzy for 4 weeks as of today and I think I found the answer why … MAV.

I first experienced the dizziness 4 weeks ago. I was riding in the backseat of my truck. I have a 3-month old and sat back there with her. We were driving about an hour away to meet family at a restaurant. I’m guessing I got motion sickness, when I got out of the truck I was very dizzy but I thought it would go away if I ate something. Well the whole evening I was lightheaded and it got better by the next morning. However, on Sunday night after being fine all day I got into bed and I experienced vertigo. I felt like I was falling…or completely drunk; it only lasted a couple minutes and I figured I would be fine the next morning. I had vertigo for one day last year but it was gone with no side effects. This time was different, I woke up in a complete fog, with lots of visual snow, my ear felt a little full and I had a light ringing in the ear. I could barely see things right. I felt so dizzy like I had a hangover even though I haven’t drank in over a year!

I kept thinking it would just go away but I woke up everyday for the whole week the same way although the visual snow got better and eventually the dizziness died down some I was so anxious having panic attacks wondering what was happening to me. I went to the ER twice and all they said was it was vertigo and it would go away. I eventually saw an ENT who diagnosed me with labyrinthitis. He diagnosed me just based on my symptoms and ran no tests. He did check my eyes and I had no nystagmus. I never had the rapid eye movements according to the doctors at the ER also. I felt like my eyes were moving everywhere but I think it is just hard to focus and my eyes have to work harder to do that. The reason the doc said labyrinthitis was because of my episode of vertigo and then being dizzy and disoriented afterwards.

It has got better but I’m still very lightheaded everyday and have so much pressure in my head. I have always had the pressure but figured it was labyrinthitis related. As I was searching for answers to how I got labyrinthitis I found out about MAV. I really feel like this is what I have. I have a history of headaches, migraines run in my family, my grandma used to get them really bad and would even throw up during an attack. My 10-year old son has also been getting headaches for a couple years now. It has become more frequent this year though. I never thought anything of my headaches until this dizziness. I know it can also be brought on my hormones and I just had a baby 3 months ago and was breastfeeding when this hit me she was only 2 months old.

To me this sounds more like MAV then labyrinthitis, as I have heard labyrinthitis occurs in one distinct bouts of vertigo…even though I had vertigo only one time which left me dizzy ever since I had the dizziness from riding in my truck the day before. Also I wasn’t sick or anything which I know is common before catching labyrinthitis. Most of my dizziness is visual. I haven’t been able to go to stores because focusing on all the people is hard and I feel very out of it. I have had such horrible brain fog since this started. It has made it so hard to care for my family. I was prescribed Zoloft by my GP because I was so depressed and anxious over all this but I’m hoping it can also help with the dizziness if this is MAV.

I’m going to ask for a referral to a neurologist from my GP. Does this sound like MAV to you? I just want a correct diagnosis so I can get back to living my life. Sorry this is so long, thank you for reading and any help you can give in advance.

Hi and sorry to read your post,
LIke so many of us, it becomes pretty clear when you’ve seen this type of stuff over and over in the people who post here. I found this site while pouring over the internet searching “dizzy”…“visual dizziness” things of that nature. Boy was I glad to find this site. Actually, I was horrified because it became clear it wasn’t some 7 day virus and I could go back to “normal”…I would be stuck on some meds, or never feel quite right again…but education is really key. THen support…the people on this site are so great. Having a place to go, even if it’s cyber, is really great so I don’t have to feel so alone.
I am not sure I have MAV…I know it’s some kind of brain chemistry issue, because I am responding so well to medications, but never have had a migraine in my life and not having any family history. But I have had 2 visual auras…and a childhood where I experienced motion intolerance, so it points that way…
It’s probably a good place to start with Zoloft, as it should help with your mood/anxiety by raising serotonin levels. That is usually a big thing in migraine related issues…dysfunctional serotonin to some degree. Did you start it? Others have had really good results with it. Here’s hoping it works for you!
Kelley

hi, im a mum too and vertigo definately makes things very hard. I had a bad bout of nystagmus, told lab/vestibular neurtois. Now i am told its mav (i have no nystagmus anymore). I would definately see a neuro. I have had this for 2 years, at first i thought it would just go away so i didnt do much about it. I think the longer you leave it probably the harder it is to clear up. Drs in australia say any history of migrane is a good clue it could be mav. lab etc can set mav off too from what i read. I do have headaches but not classic migranes that i had years ago. Some here are on zoloft and its helped, they say 6 weeks roughly to know if its going to work. Some have tried a few meds no luck. So if you get headches have a history, see a neuro for a 2nd opinion. You may need mri or caloric testing too.
What country are you are you in as some can recommend a specialist in your area

Thank you so much for replying. I am so glad to have found this place. It’s hard when you don’t know why you’re dizzy and no one seems to understand. Everyone kept saying “oh you just had a baby it is just gonna go away”. Well it’s not like this happened right after I had her…it hit me 2 months later. I have also just been experiencing the rocking sensation when I’m sitting…like I’m on a rocking chair. Which I also searched on here and see is common.

I have started Zoloft and I have been on it almost 2 weeks. I was on 25mg for 4 days then went up to 50mg on the 5th day. I have noticed a decrease in my anxiety and have had no panic attacks since about 1 week on it. My dizziness was getting slightly better but still no where near myself…not sure if that’s due to the med or not though? I did get my first first monthly cycle last week since having my baby, that sent me right back into a complete dizzy fog, similar to when this while thing started. I’m hoping once I’m off it, it will die down more. What is the typical dose for Zoloft to help MAV? I’m not sure when I should increase if at all? I will ask the neuro when I get an appt. With him, which is hopefully soon. I’m in the United States in Las Cruces, New Mexico, but I’m right on the Texas line close to El Paso, TX.

Hi,
I’m on week 4 of Zoloft. I had three “good day” which I started to feel better, but I started Propanolol a week ago and have not had a good day since. I’d say Zoloft and I got along at week three, but the first two weeks I felt really bad…

Best of luck to you for searching for a cure. My dizziness worsened recently, and I get migraines frequently too and I just started the medicine express…

I think 50mg is a good dose for migraine. You can go up from there, but I think most people do for depression. Glad to hear it’s working on the anxiety.
I think with your rocking sensation, you might want to try something that works really well for me…phenergan. You need to get it from your dr, but it is classified as an antihistamine…it is rx’d for dizziness. It makes you sleep really well too. I have no side effects from it and it really helped, in addition to my antidepressant Cymbalta. I do take a low dose Klonopin too, and I am doing really well.
Best to you…
Kelley

Thank you so much. I am going to continue on the 50mg but so far it hasn’t done much for my dizziness…or atleast I don’t think it has. I had to take my son to his summer program today and I had such a hard time driving there. I felt so dizzy when trying to focus on the street and cars. Its like everything is moving too quickly. I have been taking ativan when I have a really bad day but lately that has done nothing. I haven’t been able to go to Walmart to grocery shop in a couple weeks. The times I did I was loaded up on ativan. I called the neuro I was referred to today and I can’t get in till the 25th…2 weeks. I’m just hoping to be able to function until then. My head has been pounding all day today…not sure if its from the visual strain I had while driving that set it off. Its hard to believe migraines could be the cause of all this trouble. I picked up the book “heal your headache” and I’m already learning so much and realizing how over the years migraine could have been causing problems for me without me even knowing it!

Heal Your Headache is a darn good book!!! Don’t be surprised that it takes two weeks to get into a good neuro - took me three weeks to get in with a neuro in Winchester, VA. I think that’s a norm for that long period of time if you’re a new patient. Whatever you do, don’t lose hope. (I’m struggling with that thought myself to be honest…)

Kelley - does the phenargen help with the rocking sensation??? :smiley:
I’ll talk to my neuro about that if Propanolol doesn’t work for me. Going on day 8 and still feel like horse sh!t.

Nick

— Begin quote from "theogdenmancan"

Heal Your Headache is a darn good book!!!

— End quote

I’d also suggest you grab a copy of “The Migraine Brain” by Carolyn Bernstein. S

HI
I haven’t had rocking per se, only after being on a boat for days…but that was before MAV hit (years ago)…but it did help with the strangeness in the brain that is hard to explain. It did knock out the rest of the dizzies that Cymbalta and Klonopoin alone were not doing.
There is a dr who swears EFfexor is the best med for the visual stuff…I tried it and it didn’t work for me, but everyone’s mileage will vary.
Kelley