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Could this be MAV?


#1

Hi everyone,

First oh my goodness im so sorry this is so long!!! I’m new here and in need of some advice/opinions. I haven’t officially been diagnosed with MAV, but I’m wondering if this is what might be going on with me. I’m a 34 year old female. Before this I was very active, healthy and had a really good diet. I was basically trying to live the healthiest lifestyle as much as possible. I’ve actually always been healthy other than having anxiety/depression, which I’ve suffered with most of my life due to childhood trauma. I’ve also suffered with horrible periods. I don’t have a history or family history of migraines. I just get tension headaches from time to time. Although, I do believe I’ve had 1 migraine before, which happened almost 2 years ago… it was towards the end of probably the most stressful and emotional time of my life. Basically, my life came to a screeching halt overnight 5 months ago. I literally never thought or imagined something this debilitating could happen to me. It was a Wednesday evening and I went for a run… after I stopped I felt dizzy. It’s not a lightheaded feeling, more of like I just got off a mild carnival ride feeling. This has happened to me before, but quickly subsides. It did. However, the next two days (Thursday/Friday) I continued to feel dizzy off and on. I just thought it was because my period was due to start. That Saturday morning I woke up, started my period, had cramps and a pretty nasty one sided headache. I took Motrin, ate and got back into bed. I thought I felt better, so I got up and that’s when my nightmare began. I’ve had these symptoms 24/7 ever since they will wax and wane but are always there…

  • Dizzy… non spinning whirly feeling, like I just got off a mild carnival ride or like that dizzy feeling you get when you spin around in a circle really quickly and then stop.
  • Push/pull/swaying sensations. Often when I’m walking or sitting on the edge of the couch/bed I feel as if I’m being pushed forward or that I’m going to fall forward. Sometimes I feel like I’m being pulled to the side.
    -Rocking sensation. I feel like I’m either rocking or the bed/couch is being moved back and forth.
    -Sometimes I feel like the floor is moving up.
    -Heavy head/pressure in my face, eyes, throat. Almost like a head rush feeling. It’s more instense if I move my head to quickly, stop moving to quickly, looking up and down or bending down and standing up.
    -Tension headaches. Pulsing temples that radiates down to my neck. My ears will feel hot.
    -Nausea off and on
    -Ok, this symptom is by far the worst, strangest and the hardest for me to describe… my eyes/head feel drunk/fuzzy//buzzed/hazy. I don’t act or walk drunk, but I just mentally feel like it. Although, I do feel like my cognitive function is not good. My eyes just feel so funny… not blurry really. I just can’t focus on things and the more I move around, the worst it gets. Like I might blackout from all the “alcohol.” I almost feel like I have intense brain fog, like I’m in a dream like state. Um and there’s lots of pressure in my eyes, like I’m straining to keep them open sometimes.
    -Fatigue
    -Severe depression and anxiety
    -Slight sensitivity to light

Things that make it worse are…

-ANY type of stimulation
-Reading, screen time
-Coffee, alcohol
-Too much or too little activity
-Hungry
-Hormones ovulation/menses
-Too much or too little sleep
-Anxiety/depression
-Being overheated
-Long drives/walks… during I’m fine but after I’m so dizzy
-Grocery stores… Costco is the worst!
-Long conversations with people… weird?
-Mornings are bad, peaks in afternoon, subsides a bit in the evenings

In the two weeks leading up to this, I felt like I was having panic attacks. But I think it was actually mini episodes of all this. I will say I’ve had a few episodes of this similar dizziness… once 7 years ago, lasted 2 weeks or so and once 5 years ago when I was pregnant with my son. That lasted 2 weeks or so as well. GP said BPPV and will go away. I’ve also had a couple days here and there that I’ve had these feelings, but only for a day. None of these episodes were debilitating or this extreme and I could still carry about my day and lead a normal life. This was all 5-7 years ago. Never have had a thought about it since.

Tests I’ve had done are several blood tests, hearing tests, basic VNG, MRI with and w/o contrast. Haven’t mentally prepared to get the caloric yet. I did test positive for right sided horizontal BPPV. The bbq roll is not working. My neurologist seems to think I just have BPPV with anxiety. I’ve had anxiety since age 10 and it has never triggered dizziness. I really feel like something else is going on… I mean what’s triggering the BPPV? I also feel like there’s some sort of a hormonal component going on since this all started leading up to and then exploded the day of my period. He is now thinking there is a possibility that it could be MAV.

I don’t have ear pressure/fullness, tinnitus, spinning vertigo, history of migraine or sensitivity to sound. So, maybe it’s not MAV? Who knows… I’m just exploring all my options. I need my life back… I’m a mom and wife, I can’t keep leaving like this. :(:cry:

Anyway… Any opinions would be greatly appreciated!!!

Thank you so much,

Alexandra


#2

Alexandra,

Welcome! Your symptoms sound identical to what many others on this forum describe. I suggest you start by reading our Welcome post (there’s a link for it at the top of the forum, just under the title). The Welcome post contains a list of links to other “Wiki” threads that we’ve put together for new members.

Then come back to the forum and scroll down through the titles of the threads. Click on the threads that sound like they were started by new members, and you’ll find that many people describe the same feelings (rocking, push-pull, swaying, etc.) that you’re describing.

The good news is that there are treatments and diet modifications that can help. You’ll probably need to see a specialist, a neuro-otologist, to find someone who knows about vestibular migraine. (After I was told by a neuro-otologist that I probably had vestibular migraine, I told my primary care physician the next time I saw her. She said, “Vestibular migraine? What’s that? I’ve never heard of that.”)

It sounds like you’re in the right place. Welcome again!


#3

Wonderful, thank you so much for the information! I’ll definitely check out and scroll through the rest of the forum.

I feel like vestibular migraine is not very well known… there doesn’t seem to be a ton of information out there. Well, until I found this site!

Thank you so much for the quick reply and warm welcome :blush:


#4

@AlexandraB So sorry you have to be on this forum, but since you have to be, welcome. And this is a great place for information and support, as @Manatee said.

I have experienced all of your bullet point symptoms except for the depression and fatigue. Well, really nasty headaches that involve eye pain and last over 24 hours seem to tire me out, but otherwise fatigue hasn’t been an issue yet.

Your triggers are fairly on par with mine too. I don’t drink alcohol or coffee so I don’t know about those for me, but I’m sure they would make me feel awful. The long conversations with people isn’t a weird trigger at all. I have that problem too. For me I seem to have trouble focusing on someone while they’re talking to me, even if they’re directly in front and I don’t have to turn my head to see them. I think it’s an eye focusing thing. Eye pain is awful for me, and I can get blurred vision, especially after waking up and too much computer use. Which I have approached right now and need to sign off for now, but best of luck battling this beast!


#5

Thank you so much for your reply!

I’m so glad the long conversations with people don’t seem weird… I thought I was going crazy or something. I think I tend to get anxiety around people now too, so I know that doesn’t help things. It’s like my brain literally cannot take any type of stimulation.

I no longer drink alcohol or coffee… I have zero desire for the alcohol, especially because I already feel drunk ha ha. Coffee though, I miss terribly… especially since I’m so exhausted.

Another thing I forgot to mention is that I don’t get auras at all either.

What have you been doing for treatment? Are you on any medication?


#6

@AlexandraB You’re welcome. Yeah I don’t get auras either, knock on wood. I was thinking after I posted last night, another huge trigger for me is being overheated or simply in a warm environment, indoors or out. Another trigger you mentioned. And, my husband and I like our apartment as cool/cold as possible, so if I go out ANYWHERE else, a doctor’s office, family’s house (all of which I currently can’t do) I have to wear a t-shirt or layers because I know I’ll get warm and then more uncomfortable, even in 20 degree F weather!

I’ve tried a bunch of medications over the years, but not too many for a “fair trial,” meaning getting to a high enough dose and lasting on it long enough. Xanax has been the only thing that helped me without many side effects at first, but I highly don’t recommend it. Even at a low dose my body has become physiologically dependent on it, and it was like a band-aid that bought me a few more years of being able to work. And I’ve already tried to taper off of it once and the withdraw was the WORST. I know it will be harder for me to taper off Xanax than it will be to get on a medication that hopefully helps some of my symptoms. And I am currently housebound, haven’t even been able to get out to doctors appointments or daily walks like I used to do since mid-February, and can barely do anything at all. So that’s saying a lot.

I’m about to try Amitriptyline again, even though 2 years ago I tried to get on it 3 separate times and got dizzier each time and only lasted 2 days. I am hoping it will be somehow different this time…

Oh, from your first post: I also don’t have a history of migraine before the dizziness nor do I have any family history of migraine. That point made me skeptical of the vestibular migraine diagnosis for a long time.

Are you going to try any medications/supplements/diet changes?


#7

Hi Alexandra,

I have some of your symptoms as well even though I don’t quite know what I have. I definitely am very depressed right now, and I thought it was interesting how you felt a little better at night. That’s been happening to me to. Let me know how your journey goes.


#8

Also, I definitely agree with you on the hormonal connection. I feel that hormones affect me as well.


#9

You poor thing. This really is a horrible condition. I’m really dreading summer with the heat. Where I live it gets SO hot. I’ve been so tempted to try Xanax, but just like you said I know the withdrawals can be tough. So I’ve been very hesitant. I do hope the Amitriptyline works for you this time. What about that other one… nortriptyline?

Another thing my neurologist mentioned is that most patients who have MAV have a lot of nausea and vomiting. I don’t fit that category, so that’s why he didn’t think I could possibly have this at first. I do get nauseous, but it’s usually hormone related. However, I do have a sense of motion/car sickness often. Especially when I go for long walks. And I do suffer with motion sickness in general… never as a child though, it started in my 20’s.

As for my own treatments… I’m not sure yet. As of now, I already take magnesium. But I suppose I could start taking the other supplements mentioned. I don’t consume alcohol, coffee, sugar, dairy/cheese or msg. I do eat a whole foods mostly organic diet, but there are a few things I could change… like no citrus, cocoa etc. or maybe a little less salt? However, I’m definitely willing to try medication. I’m tempted to get back on my Lexapro that I took for a few months a year or so ago. My anxiety is something I need to get under control. I have an appointment next week, we’ll see what happens.

Hugs!


#10

Hi there!

It is so interesting about feeling better at night… I have a few theories. My anxiety tends to be less at night. Also since it’s finally dark, I don’t have as much visual stimuli going on around me. Or maybe it just takes that long during the day for my brain to figure itself out?

I’m convinced there is a hormonal connection with me… this all started leading up to my cycle and then exploded the first day of my period. So my hormones clearly triggered it. Doctors of course have said it’s just a coincidence… but I’m not so sure. I just started my period this morning, so I’m extra spinny today.

I’ll definitely keep you posted on my journey. What has been yours so far?

Thanks for your reply!


#11

Hi Alexandra,

MAV is different for everybody. We have a huge list of things some of us get, some don’t, some of it’s sometimes, some of it’s all the time. I don’t have every MAV symptom either, but I have a lot of them and so do you. MAV/VM is poorly understood and a diagnosis of exclusion. Everybody’s neurology/vestibular system is a little different. That said, you definitely sound like one of us. Welcome.

Emily


#12

Go with your instincts. There’s a reason migraines are more prominent in women. Not all of us are hormonally triggered, but a whole lot of us are.


#13

@AlexandraB Thanks. Yeah I can’t wish this condition upon anyone. It gets very hot and humid where I am too, and we’re on a 3rd story (top) apartment that is always warm even if it’s only in the 60s outside. I’ve always dreaded the summer especially ever since I’ve lived in this apartment.

Interesting that you’re neurologist says people with MAV tend to have nausea and vomiting. I had some nausea in the very beginning but then didn’t for the longest time. I’d say in the last year I’ve had a lot more, however, mostly when I get visual vertigo issues. Also I’ve had balance issues where I feel like I’m swaying side to side, that can get me nauseated too. Knock on wood, I haven’t thrown up from this condition, yet. However, I have come close many times and have felt the worse I get that it could be the next thing.

I’ve always had motion sickness, even as a child, but it’s definitely gotten worse as I’ve gotten older (before MAV) and then is horrible now with MAV. When I first had MAV I could drive so I would always need to drive, and sometimes even gotten carsick when I drove. My carsickness is predominantly headaches, dizziness, and weird eye feelings (which is also what my MAV is) but I have been nauseated a few times especially lately. Now I can’t drive, so riding as a passenger is horrible, and the last time I was out in a car, February 6th, I got so many carsickness issues that lasted the whole day, and a cross eyed feeling that lasted 5 days after, that I haven’t gone out in a car since.

I need the Amitriptyline to work and not make me crazy worse in the beginning. I am completely apartment bound until I can find a medicine to help me at this point. I tried Nortriptyline too and had an even worse experience with it. It made me dizzier than the Amitriptyline did, I’m assuming because it was a larger dose as it was a capsule that couldn’t be broken where as with the Ami I broke the tablet up.

Wow, great job with your current diet, that takes a lot of dedication. Good luck with your appointment, I hope you get a good plan set!


#14

Hi Emily,

I definitely agree that MAV is poorly understood. I’ve also read it is highly under diagnosed and could actually be one of… if not the leading cause of dizziness/vertigo.

As for my hormones, I’m definitely trying to get the doctors to take this into consideration. I’ve suffered with hormonal imbalances for several years now… and even if my labs show normal ranges, I don’t do well with the monthly fluctuations.

Thank you for your reply :blush:


#15

You get humidity too?! Ugh you poor thing! Here in California we don’t have that… just 105 degree or above days that never cool off!

I’ve actually been more nauseous too lately. At first I didn’t really have any…

My carsickness is just an overall woozy feeling, with pressure in my face/head. There’s been times in years past after a drive I will feel dizzy/still feel like I’m moving. Reading in the car definitely makes me nauseous. And roller coaster rides?! Forget it! We had to drive 2 hours on Easter Sunday and there was a lot of traffic… so lots of stopping and going. The whole rest of the day I literally felt like I was “stopping and going” or that my chair I was sitting in was moving back to back.

Are you able to start Ami with a 1/4 of the pill? I was able to do that with my Lexapro. Let me know how it works for you this time.

Thank you, the dedication of my diet has finally become easier… I’ve struggled/struggle with IBS, so I’ll do anything to help in that department too, ha ha. It is hard sometimes watching my husband and kids eating whatever they want :roll_eyes: especially when my husband has coffee. Oh how I miss it dearly!

I’m so sorry you’re housebound… my heart hurts for you because I can definitely relate. I really hope you find some relief soon! Hugs!


#16

The problem with lab normals is twofold - there are a lot of undiagnosed folks mixed into the average ranges (you see this with thyroid a lot) and we MAV folks are super sensitive to basically everything including hormonal changes. I can tell a major difference between a glucose of 75 mg/dL versus one at 100 mg/dL, even though both are considered normal. My hands shake below 70 and above 120, though both are ‘normal’ non-diabetic results. I have both hypothyroidism and PCOS, and can say with certainty when my meds are off, even when my lab work is ‘good’. The lesson I’ve learned with doctors (GP, ENT, endocrinologist, gynecologist, urogynocologist, gastroenterologist, audiologist, optometrist, neurologist - with MAV we play -ist bingo) is that you have to educate yourself and then be willing to advocate for yourself and educate them. And don’t be afraid to shop around.

P.S. IBS and MAV go together a lot.


#17

@AlexandraB Thanks so much, I appreciate the support. I am so nervous about the Amitriptyline it’s crazy. I guess having taken it before and experiencing my worst dizziness ever with it didn’t help. But now I’ve surpassed my “worst” from back then and what I get now normally is worse than what I got after the Ami before, if that makes sense. So if Ami makes me even worse, I just don’t see how I’ll handle it. But yes, I am able to cut the pill into 1/4s, and my husband even got it into 1/8ths that I’ll try this week this time. Since my bad reactions started at 1/4 of a pill last time. Sigh.

So sorry you had to drive so far on Easter and then had all those awful sensations afterwards. Yes, I also get head pressure for carsickness.

Wow, 105 is hot. I’m in Maryland, so we can get 90 to 95+ even 100 and humidity.

I tried Lexapro twice last year, 1/4 of a tablet. Got really nauseated the first time & couldn’t eat the second day. Tried it with an anti-emetic the second time (Zofran) and the nausea was better but I had a horrible panic attack on it and developed a bad headache, worse than what I get each time with Zofran. It felt like the Zofran and Lexapro were mixing in my brain somehow with the effects, it felt horrible.
I’ll keep you posted, I just hope I can go through with trying it. I’ve backed out so many times now. The backing out started after the two horrible trys of the Lexapro. Before I tried Lexapro it was just procrastination and trying to find good timing with medications. Then it became many weeks of backing out, going back and forth on which meds to try, etc. That’s the worst of my anxiety though, unless a medication brings it out further like the panic attack from the Lexapro or inter-dosing Xanax withdraw that I get sometimes.


#18

@AlexandraB

Yea I think that at night there are less stressors possibly. I definitely think that hormones play a role and I don’t think the testing is that advanced. I’m planning on seeing a functional neurologist to run some more in depth tests and we’ll see what else. I find it hard to believe that you just have to take medicine to feel better. I think there is more that can be done. Please keep me posted!


#19

I couldn’t agree more with everything you said! Just because labs are within “normal” ranges, doesn’t mean it’s normal for that person. I respect doctors who go more by symptoms rather than lab tests. I mean, isn’t that what they had to do years ago before they even had testing??

Interesting you mentioned glucose… I have felt very hypoglycemic since this all started. The dizziness really intensifies when I’m hungry. I wonder if there’s a MAV connection with that? My labs were normal of course.

As for my IBS… I had finally seemed to get that really under control. And then the dizziness started! Maybe it moved from my gut to my head ha ha.


#20

100 with humidity?! I couldn’t even imagine!

Well, I’m glad you’re able to start with an 1/8 of a tablet. I really hope it works for you. When do you plan on starting? Also, what were your side effects before? I can definitely relate I have MAJOR anxiety taking medication.

I’ve heard a lot of people can’t tolerate Lexapro much. My brother takes Celexa. Which I guess is similar? He has success with that one. I’ve heard that if a medication works for one blood family member it might work for another? Something about genetics. Maybe you have someone in your family that has had success with one?