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MAV or MdDS? Or Both!


#1

Well hello again - it’s been a while since I was on here last.

Symptoms - practically the same. Unchanged. Do I have vestibular migraine or MdDS? I haven’t got a clue! That’s a diagnosis that seems to be up in the air! As a reminder to all who may be interested, my symptoms include a swaying, tilting vision (everything I look at wants to drift to the left) with my head occasionally feeling like a buoy at sea! 24-7 on going ever since I stepped off a long haul flight (hence MdDS theory)… However, unlike MdDS patients, my balance is very good and more or less normal. Correct me if i’m wrong but I can’t imagine many MdDS patients able to stand on one leg with their eyes closed!
I have stopped vestibular rehab as believe me, this exacerbated my symptoms. I haven’t really tried much in line of treatments but had attempted nortriptyline (10mg) and propranolol (80mg) which never provided any benefit. Currently looking into functional medicine as I would prefer to determine any issues concerning my overall health rather than jumping into meds again however, this is beginning to get on my nerves and it’s particularly frustrating having to work in a laboratory (i’m a clinical research scientist) with everything bobbing about the place. So, the questions I would like to ask are:

  • Does this sound like MAV or MdDS? Isn’t MdDS more a ‘balance’ issue rather than a ‘seeing movement’ issue? Also, vestibular rehab (gaze instability exercises) made me really dizzy. Is this typical of MdDS? Or more like MAV? I am better seeing motion and in motion. These symptoms are at their max intensity when I am still and looking at stationary objects.

  • Can MAV be a chronic 24/7 disorder rather than an intermittent condition?

  • And if I do decide to trial the meds again - who has had good results for the visual rubbish including both the visual movements and sensitivity - for both MAV and MdDS?

Thank you loads!
Jen


#2

This is personal, exacerbated mine too, guaranteed. Going for long walks (occasionally through malls!) turned out better therapy for me.

For sure MAV is chronic with 24/7 symptoms! And so is Secondary Hydrops btw which has identical symptoms.

Ami was perfect for this. Very effective for me.

I think ultimately, at some point, you have to de-prioritise the diagnosis and focus on what makes you feel better. I went to see 4 doctors and they all said something at least slightly or wholly different.

I believe working through the advice given for MAV is really worthwhile, with Dr. S.'s diet, conservative exercise and Dr. Hain’s meds flowchart being the most important things to bear in mind.


#3

I could have typed some of this myself. Dr.Hain said i “could” have a MDDS component to my already existing vestibular migraine. Hain made it super clear that MDDS is a migraine variant. He suggested I try optokinetic VRT which was proved to help with MDDS at Mt.Sinai hospital by Dr.Dai. Dr.Hain also did mention Effexor can help mitigate MDDS by upto 60%.

My MDDS is more bobbing, no visual vertigo for me. Also my imbalance mostly only during walking and standing. Hope this helps.


#4

my doctor told me if i stop getting pain and just the rocking/ swaying then it is mdds but she also said mdds is a variant of migraine and venlafaxine was used for both mav and mdds. Also recommended mount st treatment. Not all mdds loose their balance though, they have a scale of symptoms, if you lool at mdds foundation website.


#5

Yeah, I think you may be right there - stop prioritising on the ‘what’. I think my only concern is some meds work better for MdDS than others. It’s incredibly confusing as my predominant issue is visual (watching TV atm and I can see the walls swaying at the side of my eyes!) and not so much balance.
I remember you mentioning Ami before. I hope to be seeing a neurologist soon who may be able to prescribe it.
Gosh, this is a pain but I’ve been rather reluctant to take meds (side effect worrier) and thus, I’m looking into functional medicine hoping it may positively influence my symptoms. Having said that though, meds may also be necessary.


#6

I recently got in touch with Mt. S regarding the optokinetic treatment and sent in the patient intake form so I’m awaiting whether they think I am suitable for treatment. I’ll have to wait and see what they say.
60% improvement is good enough for me! I guess the rest is lifestyle changes…


#7

Very similar to me as well. My head is bobbing and shifting, or I feel top heavy like my head could fall to the ground easily. I can stand on one leg with my eyes closed, not 100% or as graceful as I used to but yeah I can do it. I used to have a lot of severe head pressure too, but that has come down significantly with Verapamil (currently at 360mg). Seeing motion and being in motion does not bother me much anymore. Sometimes grocery store or crowds can still get me dizzy though. Just standing/sitting and walking as I turn my head about throws me off. I have also stopped VRT as I could no longer feel a benefit. Gaze stabilization helps the bobbing for sure, and yes it makes me feel a dizzy but its worth it. Also do meditation / tai chi with eyes closed which I think helps a bit too, although its quite uncomfortable.


#8

Really fast head movements and glancing across to the side tends to make me dizzy. Another thing which I find relatively confusing is driving. Ok, my rocking symptoms may disappear (like MdDS) but they’re so little anyway that it’s almost unnoticeable. It’s the visual stimuli that increases my symptoms, such as the white lines on the road, the cars coming from all directions, etc…I can drive - it’s not a problem but it’s the aftermath when my symptoms are heightened. So this (I believe) can be either MdDS or MAV…?!
I’m fine standing on one leg, eyes closed for several minutes. Put it this way, if things stopped shifting in my vision (hence I’m really tempted to try amitriptyline), I wouldn’t have any real problem…it’s just this vision rubbish that’s really getting on my nerves.


#9

Jen I think we have to face that at this stage in the development of vestibular medicine, it is very possible MAV = MdDS, it’s just presenting differently in different people. Neither has a nailed down aetiology.

It probably makes no practical difference to have either diagnosis? You still have to go through the exploratory process to find out what makes you feel better.

I have separate diagnoses of both Secondary Hydrops and MAV (and this is common) and this frustrated me for a couple of years until I realised that it almost makes no difference to how I feel and it was up to me to find ways of getting & feeling better.

I asked my doctor about this and he said “well yes they both have the same symptoms”

Uncertainty is difficult to deal with, but it is what it is.

Go forth and feel better! :slight_smile:


#10

4 posts were split to a new topic: I panic when i read Hains flow chart


#11

Delayed reaction to visual stimuli, that’s what you are experiencing. The visual stimuli is the trigger. Triggers can sometimes take a long time to kick in. Not necessarily instant. I found this with environmental triggers, Restaurants, probably the mixed lighting, is one of my main triggers and I’ve regularly had a full-on attack start three days later. Triggers can also be cumulative.

The visual symptoms you experience are termed ‘visual vertigo’ and are common with vestibular disorders.

Motion either self or environment is common with MAV. I know nothing of MddS.


#12

Only person I’ve noticed doing this was @Camille_Chaf. Perhaps she could let you know how’s she got on with it.


#13

Do you need a referal to contact Mount Sinai ? Does insurance cover this treatment? Any idea on cost if it comes to out of pocket


#14

Not that I am aware but I am not sure. I live in the UK and so far all I have done is sent an email informing them of my symptoms. They sent me a patient intake form which I had to fill in and send back. I’m still waiting as to whether they think the treatment will be of any benefit.


#15

Understood Jen. Good luck.


#16

Thank you but anyhow in the mean time I’m looking into functional medicine. Trying to fix what I can without resorting to pharmaceutical drugs.


#17

@Jen I want to share this video. I like Joey a lot. https://www.youtube.com/watch?v=j_OAR8lfm6w


#18

Thank you for this!
I’m tempted to buy the 12 week programme to see if it has an effect. Have you tried it or know anyone who has?


#19

I started last week… it is working for me for the anxiety, and not to be afraid of moving my head. I can tell you more in a few weeks.


#20

Sounds like a good start. Trying to get the anxiety down is key to these conditions. It just fuels the symptoms.