Hi All,
Lisa (MAVNY) asked me to post this for people to review. There may be some here with this going on though I have to admit I don’t know a whole lot about it other than it hits after a period of time in motion – like on a boat or even a night in a water bed! Treatment appears to be limited too unfortunately. I think Lisa may have more to say on the topic. Sorry it took me so long to post this Lisa.
Scott 8)
By complete coincidence I met a woman who was diagnosed with MddS by Halmagyi. She had it for two years and had to travel all the way from Perth to see him as no-one in WA could figure out what was wrong with her.
I’ve tried to find out what he treated her with but other than a regimen of swimming (she’s a friend of a friend) I don’t know. Anyway, she’s heaps better I’m told.
This is another of the diagnoses that two neurotologists have floated around with me. My first guy considered it a “disorder of habituation”; my current MD says it is closely related to migraine.
OMG I remember back in about 1993, pre- current MAV days but post- former spell of MAV (if that makes sense) I took the hydrofoil or catamaran or whatever it’s called from Bali to Lombok (being a bit scared of flying in the tiny Merpati plane).
Now I’ve always suffered from seasickness. But this was off the planet. Can’t remember how long the crossing was (2 to 4 hours), but it was rough. I have never felt so ill in my life. Everyone was throwing up on deck and I remember finding the centre of the boat outside at the back and lying there completely still for the whole journey, saying to myself ‘breathe in, breathe out’ over and over with my eyes shut. My boyfriend at the time was the only person on board not affected. He took quite a lot of photos of me lying there for some reason.
For the first 48 hours on Lombok the ground was swaying back and forth and I couldn’t eat a thing. But it went away.
We got the tinpot Merpati plane back to Bali…
Dizzy Izzy
Hi Scott and everyone,
Thanks so much for posting. I have suffered from severe rocking, head heaviness, head spinning sensation, photosensitivity at times, and increased symptoms in highly stimulating visual environments (to name a few symptoms…lol) for almost 4 years now. I originally received the diagnosis of MAV but I am starting to believe (and my docs have questioned the MAV diagnosis as well) that I have Mdds without a motion experience (Dr. Cha says percentage of cases can be spontaneous–no motion experience! ugh). After reading Dr. Cha’s paper I am even more convinced of it as the 24/7 rockcing has never gone away and is so severe that I am for all intents and purposes bedridden. I was hoping that some members of the forum with 24/7 rocking could also read the paper (it speaks a bit about MAV as well) and give me their thoughts. It is a very easily understandable paper even for the layman and she points to spontaenous cases and also to potential treatments. As you all might imagine, I am scared out of my mind with the probablility of carrying this diagnosis… ;(
Thanks so much in advance!
Warmly,
Lisa
I thought that I possibly had MddS since my symptoms – two episodes of true vertigo followed by constant false motion and rocking – started about a month after doing a lot of flying to and from Asia (15 hours in plane), but the doctors said that MddS typically starts immediately after de-boarding, and typically does not induce true spinning vertigo. So I ruled it out. But this paper seems to indicate that MddS is a broader phenomenon than previously realized. Interesting.
Yes, I agree Longshort. The paper did a really good job of explaining the pathophysiology of Mdds and even speaks of migraine and I feel very hopeless as my rocking is so relentless and many of the same symptoms that people with Mdds have seem to overlap directly with MAV. Confusing for rockers who have been diagnosed with MAV ;(
Lisa, talk to Dr. B. Cohen at Mt. Sinai, NYC, about the work of Dr. Dai.
Sally
Thanks Sally… I know Dr. Cohen well. He is an MUCH older doc that still firmly believes that you need a motion experience to have Mdds. He is not aware or involved in Dr. Cha’s work of the spontaneous nature of this.
And yes, you are correct in him having a handle on Mdds. He was one of the first docs that saw WWII vets coming off the Naval ships and develping brief episodes of Mdds. He is a brilliant doc no doubt.
How do you know Dr. Cohen?
Lisa
Long story. Please ask him about the work of Dr. Dai which is taking place at Mt. Sinai. He has nothing to do with Dr. Cha that I know of but I don’t know her. Dr. Cho at Mt. Sinai is another doctor who may be able to get you in touch with Dr. Dai. Google the Baraney Conference in Iceland last year to read bit about Dr. Dai and MdDS.
Sally
Hey Sally,
I am affiliated with Mount Sinai and I too know Dr. Cho and am aware of Dr. Dai’s research. I know he is doing a study with mdds folks but I did not qualify.
Thanks again!
Lisa
Hi Lisa,
I was talking to an old MDds buddy who was one of the MdDS forum leaders for many years, she tried klonopin as nothing else had helped, it was kinda a last resort med for her.
She became a patient of Dr Hain, she said he spoke about benzos not being a good choice for MdDs if taken directly after MdDs had started, as he felt it could stop the normal adaption and should only be used by long timers who had run out of alternatives, he also said that keeping the dose at as low as possible I think it was 0.2mg or at least under 0.5mg that it would be safe and withdrawal from it shouldn’t be a problem, My buddy said she decided to go off it to allow the natural process of re-adaption.
I was wondering if you think benzo’s could permanently change the brains chemistry for readaption due to the plasticity of the brain, not only in MDds but for anyone using a benzo with brain issues?
By the way , I’m so sorry you are suffering so with this monster!
I do believe the more we force ourselves to move and get out and about helps re-adaption, There was a surprising story about a lady who had MDds she was an athlete running marathons “very fit”
Her friend a another marathon runner, took her on a midnight run over bumpy ground over hill and dale you might say,
He took a torch with him as it was pitch black desert.
Before they started the run he said I want you to look at where I shine the light and only watch the light and think about nothing else, he moved the light on the ground from side to side, by the time they got to the end of the hours run, she had no more MDds.
None of us could believe what we were hearing, obviously this helped something in the brain to revert back to normal.
Sounds farfetched, but it is actually a true story. 
Hi Jenny,
With regards to your question about benzo’s and brain chemistry, with a static lesion such as vestibular neuritis for example, the research has shown that benzo’s may or may not retard (not prevent) the compensation process… meaning it might just take a little bit longer to fully compensate than someone not taking any benzos at all. Benzos as many on the forum have found are wonderful vestibular suppressants. Mdds is different in that it is not a static lesion, and if you read Dr. Cha’s paper she does an excellent job explaining the various mechanisms of the pathophysiology. Unfortunately, I believe your story is more anecdotal, as vestibular rehabilitation has not been shown to have any benefit on Mdds symptoms but you are correct moving as much as possible is a good thing. I also think for MAV benzos are an excellent drug of choice if it works for someone, as MAV is not a static lesion. Many docs especially in the US hesitate to prescribe them so readily for a variety of reasons, but I certainly disagree with this for people with MAV and Mdds. Of course you want to use the lowest dose that is therapeutic for the patient.
Warmest,
Lisa
Thanks so much Dr Lisa.
It’s good to hear from someone who really understands this illness and who also has a medical background.
I’ve always feared medications like benzo’s habituation ec: so I’ve been very circumspect with them.
I’ve read about the healing effects that anticonvulsants medications have for bi polar and epilepsy and wondered if benzo’s would be the same.
P:S
I’m trying periacton for sleep, I’m finding it’s helped by slowing my overactive brain down beautifuly.
Best wishes
Jen
Hey Jen,
I’ve actually recently looked into periactin as it was an old migraine med that for many reasons fell out of favor in the US. Do you find that it helps your rocking? Do you rock at night in bed when you try to go to sleep?
Be well,
Lisa
Lisa,
Sorry that you were not eligible for Dr. Dai’s study; was just hoping to help since you are from NY.
Sally
Hi,
Yes Lisa ,
Yes I rock all day, but over the years the G-Forces type pushing and pulling, to settled to a degree, I used to feel a perpetual backward falling. Falling thru the ground/floor, then by 6pm I’d become a little steadier on my feet.
Yes I rock all day 24/7 even when trying to get to sleep, the only time I’m free of rocking is when I’m asleep.
Over the years the rocking has become a background feeling, I know it’s not caused predominantly by head movement, but via the torso, hip back movement, I’ve had a while to study and recognize where the movement has been firing from.
I just want to say , that it does become second nature to be this way, so much so that the Brain/body has compensated in many ways, via mechanically controlling my body movements to keep me “safe” from falls ect: though it has taken a toll on my body, Knees especially.
In fact My rocking stopped for a day the other day and I unknowingly started rocking myself, just like a had my baby daughter in my arms, as I’ve seen women do, who have been without bub for the day. It comforted me.
My brain has changed over the years trying to compensate
And I believe it’s done a good job of curbing the symptoms, to a manageable level.
I’ve only been on the periacton for about a week now the rocking has become sharper.
And yet my brain is definitely come out of the fog.
My emotions are more in tact anxiety is at a low level.
Whish you the best Lisa.
All my love
jen
I rock 24/7 too. Bedtime is the absolute worst and then sitting down to dinner is the 2nd worse. Mine is coming from my brain, I can feel it. Occasionally it eases slightly and once or twice it has stopped but it always comes back and sometimes it’s so strong it will physically move me!!
I’ve noticed since I started on Nort, whilst my overall well being is slightly better (not sure if it’s the drug or not as it’s only been 5 wks) but my rocking is sharper too and has started as soon as I wake up whereas before it used to start around lunchtime and pickup throughout the rest of the day.
The rocking drives me to the point of insanity and I’m praying Nort will tackle it!!
Hi Muppo,
Wow… I can 100% relate to what you have just written. Yes, bedtime and sleep is a fight each and every night and I dread it. Just trying to lay still without any movement is so uncomfortable and distressing. Sitting for a meal, with dinner being worse than lunch, is not comfortable too.
I tried nortriptyline as well, and it increased my rocking/motion so drastically, I stopped it after less than one week. I was hoping it was going to sedate me and help me sleep but instead it just increased the rocking and made sleep all the more impossible. I just felt it was hitting the wrong transmitters in my brain (or something like that) and was aggravating my condition much more than an acceptable drug start should.
Have you ever tried benzos?
Best of luck with the nort and keep us posted!
Lisa
Hi Lovely Lisa
Yes I’ve been on Valium too between 2mg and 4mg daily depending on what I’m doing but Dr S last Friday told me he wanted me to come of the V completely … I’m going to spend this week winding down the V and then see how I feel but this past weekend (for example) I’ve taken 4mg - 5mg daily and managed REALLY well.
I keep thinking if I got my hands on Clonazepam/Klonopin it would do wonders but doc feels it’s suppressing and not allowing compensation.
I’ve only had 2mg today and this evening I already feel much worse than I’ve done the past 3 nights…
What to do?!
How are you doing and what meds are you currently taking? I’m at week 6 of Nort and now on 25mgs. Tonight my brain feels like it’s been plugged into a generator!!
Sending love x