The Vestibular Migraine Community

Update: Its not MAV, it's general anxiety disorder--unraveling the mystery


#1

I thought I’d give an update, I’m doing quite a bit better, and didn’t want to be one of those folks who gets better, then just bails for good without imparting any wisdom from my nearly 12-month journey with chronic dizziness. Anyway, I started getting skeptical about my MAV diagnosis that my neurologist dished out to me 9 months ago when I started to look super carefully at my symptoms–i.e. having very few of the traditional symptoms of migraine once the details are examined. Also I did the HEAL YOUR HEADACHE diet and it didn’t help whatsover. I think my neurologist took my verbal symptom description at face value and didn’t dig deeply enough about what these symptoms actually look like in close detail vs. symptoms of actual migraines as described clinically.

Finally, after like 10 visits to the balance center, ENT, eye doctor, blood test, etc I visited a psychiatrist in June and she confirmed that I have a severe anxiety/panic attack disorder that manifests itself mainly as a swimming-vision type of vertigo (non rotational) and a visual hypersenstivity/derealization that sometimes causes me to see flickering effects and to experience light sensitivity during periods of high stress. She believed there was no migraine mechanism going on at all. The fact that these visual effects were symmetrical, as opposed to the floating amoeba shape that is often described in traditional “aura”, were a giveaway. Also, I never had what I or any doctor perceived as a balance problem–the problem was purely one of visual perception. And after visiting a podiatrist, my foot tingling issue was actually a localized pinched nerve from wearing bad shoes with too narrow a toebox!!! Interestingly, some of the other doctors I visited early on also suggested anxiety, but I didn’t fully believe them because my symptoms were very physical rather than emotional, now what they said makes more sense, especially after watching Youtube videos where General Anxiety Disorder sufferers describe symptoms similar to mine.

Then I read this book which does a really great job of differentiating between MAV and anxiety-related dizziness (and meniere’s too). https://www.amazon.com/Dizziness-Dizzy-Better-Hopkins-Health/dp/1421420902

The final giveaway was when I flew from NYC to London–it was almost a litmus test for whether the problem was MAV which probably would have been triggered by the air pressure changes in the plane. Lo and behold I was totally fine with the pressure change, and once I started diving headfirst in my vacation I felt the first major reduction in symptoms in 6 months. And within a few days of my return to NYC, work got hectic and I was back in the thick of things feeling dizzy, swimmy and lightheaded. From that point on, I knew my problem was chronic stress/anxiety and nothing more. Still, not an easy thing to deal with.

I also looked back very closely at my personal history and found that I while I didn’t have a history of migraine, I did have a panic attack history that I didn’t even realize. In 2011 I was working in a woodshop and had to use a tablesaw regularly, and as musician too, I was terrified of cutting off my fingers, and any time I had to use the saw, I would get the same dizzy/swimmy/lightheaded feeling. Luckily it would clear up within 30 minutes and didn’t overwhelm other areas of my life. At the time I thought it was glue/solvent exposure from being in the shop, but now I’m almost positive it was the same response I have now, but more mild.

Anyway, I’m still having problems, especially during the work week, with stressful events like a salary renegotiation I had a month ago, and with urban driving and walking in large frantic crowds, but I’d say I’m up to 85% on most days; and my weekends I’m at 95%. When I truly and fully de-stress, it takes about 3 hours for the dizziness to simmer down (I assume this is the time it takes for my body to burn off all the stress hormones?)The turning point in my recovery I think was implementing a heavy regimen of cardio. I’ll do the stationary bike 3-4 times per week for 30 minutes and get my heart rate up to 140BPM. This helped me beat my insomnia and then things started to fall into place. My psychiatrist prescribed Lexapro, but I opted not to take it as I’m making slow progress on my own with the exercise and meditation, plus Amytriptaline gave me horrible heartburn. I guess it’s just a waiting game at this point, but I’m hoping that if I’m aggressive with the exercise and meditation and just have some patience, and am lucky enough to avoid any major psychological trauma in my life, I can beat this completely within a year.

This Youtuber had a very similar experience where her primary symptoms were visual disturbances de-realization and dizziness. https://www.youtube.com/watch?v=o9LG-1JsjGc

I guess the takeaway is that don’t discount the role of anxiety. It might be the root cause of your dizziness. Or if you do have MAV, its the mechanism that prolongs the dizziness. Staab wrote an interesting paper where he studied groups of people who’s chronic dizziness was purely from a panic attack/anxiety disorder, vs. people who’s chronic dizziness had a neurological trigger like MAV or concussion that interacted with their anxiety to cause chronic dizziness. If Whitman and Baloh (and Staab) are correct, true MAV is episodic, but can trigger an anxiety/panic disorder than leads to 24/7 dizziness. And also adrenaline and cortisol are powerful hormones that can make you feel like you are on a bad methamphetamine trip for 6 months straight. At the end of the day, I think my dizziness is caused by these stress hormones creating a chronic fight or flight response that makes my visual perception much more sensitive to movement and patterns and more “vigilant” than it would normally be., as if I was scanning for a predator in the jungle in prehistoric times–except 24-7! Sometimes I do feel the classic stress response in other places like my stomach or chest in the form of butterflies or burning; but the dizziness is the primary symptom. Since heavy cardio has similar effects to an SSRI and can help with neurogenesis, I think it might be the most surefire way out of either MAV or CSD, or at the very least a great accompaniment to an SSRI. Also a brisk 2 mile walk seems to be almost as effective; but the symptom reduction happens around the 25-minute mark.

If you have a true inner-ear issue, you are probably dealing with a totally different scenario, but if its psychological/neurological hopefully this helps. Thanks for replying to my threads; I think I’m signing off for good now, unless I start regressing again or my diagnosis changes!


#2

I appreciate you wanting to give back to the forum.

It is true that MAV or whatever-you-call-it hit me at a stressful time in my life. I was diagnosed with VN and i got better in 3 weeks only to be hit hard in a month’s time. I suffered for months thinking i decompensated and was doing VRT. They told me anxiety and stress was preventing my recovery. It took me a while to realize dizziness caused my anxiety and not the other way around. I have had far worse stressful situations in life and MAV or dizziness did not touch me back then.

I know stress/anxiety is definitely not the source of my problems as today i can sit with all the calmness in the world and watch my world tilt or rock from side to side. What has happened is an year of my brain being conditioned to not have the FRIGHT o FLIGHT reaction with adrenaline pumping once i encounter dizziness. This was not easy. There is something else either central or vestibular components which cause this.

I know you had good intentions at heart but i don’t think for majority of the people here anxiety or stress induced the dizziness. It certainly can make ti worse, i have seen that happen. But it does not cause it !

You can meditate all day everyday this dizziness thingy aint budging…unless diet or meds help you.


#3

This book argues heavily that Anxiety is the ONLY cause of dizziness that lasts more than 6 months…other than maybe menieres or mal deamarquement.

. https://www.amazon.com/Dizziness-Dizzy-Better-Hopkins-Health/dp/1421420902

Both this book and my GP doctor said that VN usually clears up within 2 months, unless there is a failure to compensate, caused by anxiety/stress response. I seem to buy into the “interactive” Staab model where panic disorder, inner ear damage or migraine could be the initial trigger for chronic dizziness, but that anxiety is the mechanism that converts it into a chronic thing, regardless of the initial trigger. In my case, the initial trigger was just panic attacks, but I assume for many people here it was a true inner ear disorder.

I imagine in your case the VN caused the anxiety, and then anxiety caused the dizziness to be permanent, definitely similar to how Staab would describe “interactive CSD”, but ultimately, a lot remains a mystery.


#4

What is the “interactive” Staab model ? Also what is the “Interactive CSD”. Care to throw some light on this. Obviously i have not read the book :slight_smile:


#5

actually you are probably in the Otogenic category. Interactive means you had an anxiety issue followed by an inner ear problem followed by even more anxiety. Scroll down to the bottom. This guy is from Vanderbilt University; Staab is from the Mayo Clinic


#6

Thanks for the article. I am pretty sure in my case whatever the first vestibular event was (VN or not) triggered something and left. I know for a fact over the months i gradually developed migraine. Light sensitivity, eye blurring, eye pain, vibrating sensation inside my head, tinnitus, the whole fireworks indicative of migraine. I am on a preventative Amitriptyline currently which completely took care of the migraine piece. There is still some dizziness either pending compensation or something going on in the ear (hydrops). Trying to do everything to help with the compensation.

I doubt only anxiety can cause someone to be dizzy for months.BTW i was on Zoloft for anxiety it did help with coping but did very little to the dizziness. Are you on any anxiety meds currently ? How handicapped were you by the dizziness on your bad spells ?


#7

I feel I must add my twopence worth here because attributing all of our myriad of totally disabling symptoms to stress and anxiety is taking us back to the time when doctors knew very little and it was a one size fits all diagnosis for anything they hadn’t got a clue about. Personally VM hit me at a point in my life when I was very content with my lot. I am not a stressful person and deal with problems in a calm, logical way finding coping strategies like playing my instruments, walking my dog, going to the beach etc. I do not buy into the anxiety theory, in fact my GP told me I do not have an anxiety personality so that could not be the cause of my ills. He tested my cortisol levels over a 24 hour period to prove the point and they were well within normal limits.

Obviously anxiety has been your trigger but please be careful about suggesting that the rest of us who have struggled for years, have found coping mechanisms and medication that works for us also struggle with anxiety. It is not always a chicken and egg scenario, anxiety causes VM, it is more likely the other way round, VM, being a very overwhelming concoction of symptoms, causes anxiety.


#8

Agree with Margaret and Vignesh. Short of few illnesses/conditions this is probably one of the most frightening and disturbing. In addition there is a direct link between the vestibular brain and its anxiety centre. Have you ever looked over an edge and slightly lost your footing? Even when fully fit this kind of incident immediately raises your anxiety level. That’s proof enough for me.

To exacerbate this you can also get feelings of vulnerability and health anxiety to boot!

In short, vestibular conditions are an anxiety disaster zone!!
.
Any doctor who is telling you you have anxiety is stating the obvious but at the same time has NOT found the root cause of your problem!! Anxiety is not it!! It’s a lazy, bucket, get-you-out-of-the-office, hands-thrown-in-the-air BS diagnosis!


#9

My point is not to dismiss everyone on here’s symptoms as merely anxiety, but to suggest that everyone look super analytically at the chicken and egg scenario that is chronic dizziness and try to find the root cause, and that an anxiety/panic disorder might be the root cause in more cases than people think. Everyone here is dealing with dizziness, migraine-like symptoms and anxiety, the challenge is pull them apart and see the causality, of which there are many different relationships, sometimes the Migraine causes the anxiety, sometimes the other way around. The Whitman and Baloh book was very helpful in helping figure out the relationship. Just as you shouldn’t let your GP write off your initial description of symptoms as anxiety, when 10 different specialists run a battery of balance, neurological, vision, nerve and blood tests and find nothing wrong, but half of them suggest anxiety, there might be some truth to that. That being said, I imagine many of the more severe and unresolved cases on this board are Migraine variants at their root, with anxiety as a side effect rather the cause. But for me anxiety WAS the cause. Additionally, there is probably a condition that hasn’t been studied in which unresolved inner ear damage is the primary vestibular migraine trigger, even though none of the leading migraine experts like Buchholz have really mentioned this possibility in their studies thus far. I think the MaRD theory might touch on this, though, but it’s super new?


#10

Yes, I’ve written about this extensively and posted a very recent article about this controversy. I think the neurologists are not correct. And this has actually been studied extensively, its called secondary hydrops due to chronic fistula. It has the exact same symptoms and treatment protocol as MAV/VM. The issue is that the diagnostics are not yet there to establish the definitive link between these conditions. But I believe them to be one and the same thing. In other words, if you have MAV you actually have a degree of Hydrops and probably a fistula that is driving the Hydrops (and the Hydrops is preventing/slowing the fistula from healing). There are simply too many patients with ear and hearing symptoms to ignore this, many with histories of ear trauma or stories of having suffered BPPV for some years. The migraine ‘story’ is compelling as it’s less threatening and so nebulous it can be used to explain any symptom you like. How very convenient. Too convenient!!


#12

Hi there.
I just want to say thank you for you post update.
I’ve not actually seen any of your previous posts, but i’m glad i’ve seen this one.
I’ve been suffering with vestibular migraine for 2years now but only got my diagnosis last year.
I too have found that both times i’ve flown off on holiday for a week, my symptoms completely disappear, and then when I return to work, so do my symptoms return.
I’ve always struggled with keepin my stress levels and when everything gets on top of me, i just break down and cry.
I’ve suffered with migraine headaches and a migraines stomache since i was in my teens but I don’t always have them when I the vertigo or dizziness.
I have wondered for a while now whether it is some kind of anxiety, so I’m definitely going to look into this.
Thank you again for your post and I wish you all the best now you’ve found the light at the end of your tunnel :slight_smile:


#13

I agree that anxiety among other emotion are responsible for many health ailments. Aren’t the mind and body, one? If you read the recently deceased, Dr. Sarno he explains it well. He mostly talks about back issues but in his latest book “Divided Minds” he talks about other ailments too. He relates it mostly to rage, but it can encompass other emotions. It is a shame regualr doctors don’t entertain this in their diagnosis of many diseases.