MDDS..again

Hi Guys

Im driving my little mind mad at the moment wondering if I have true Mal De Debarquement after what Hain said.

If this is the case, is it as recurrent as much as MAV, and is the outcome worse than MAv…

I guess the only way of knowing if I have this is to get through every MAV med trial right?

MDDS just seems a bit bleak from the literature…the thought of having NO chance to get normal for a LONG period of time ( more than a year) is really feaking me out.

Sorry if this all sounds a bit desperate, I almost wished Hain hadnt mentioned another illness, but its really got my mind ticking given my total lack of migraine history in the past etc.

Luke

Luke – just sent you an email. Hang in there man …

Mikael – are you able to write out some dot points about MDDS? I think you said you had some good info on it somewhere. Do you know what the current thinking is on it with regrds to onset and specific symptoms? I suspect there are a lot of myths out there about this just as there are about migraine. For example, the idea that sitting in a moving car and feeling better suggests MDDS, to me, sounds like complete bollocks.

Thanks … Scott

LUKE,

HANG IN THERE!!! Try not to do that to yourself! I came up with a new diagnosis for myself almost daily for a while and it doesn’t help one bit!! That moving car thing affects quite a few of us including myself so don’t let that scare you, go for a ride!

Tammy

Hi Luke,

I think even sometimes the best doctors say whacky stuff. I’ve been on dizzy boards for a long time, both here and the healthboard and have heard loads of people say the only time they feel good is in a moving vehicle and if only they could spend all their time in a car they’d be ok. All of them as far as I know had VN or MAV. One woman used to specifically get in a car and drive around just to get a break from the unrelenting dizziness. She had MAV.

To me, the fact you got well on pizotifen and then got ill again off it is an indicator this is definitely MAV. It’s not at all uncommon for a drug to work the first time round and then not work again. I am absolutely sure I have read this experience also from numerous people. In fact I remember reading one site that warned that if you come off a drug there is no guarantee you will get the same affect again. I’m not scientist so have no idea why. It also works the other way round, my neurologist told me I could try meds again that didn’t work the first time as they might work this time.

I just don’t buy MDDS coming on, in the first instance, a long time after you’ve travelled. I honestly think Hain was probably just having a mad moment. Maybe they get frustrated sometimes cos someone isn’t cured, so cast around for an explanation when the truth is that hitting on the right migraine drug takes a while and loads of us aren’t better yet. Have we all got MDDS? Doubt it.

Sure, in your shoes I’d probably read up on MDDS, but after that I’d kick the idea to the curb. Especially as the only reason he offered was cos you feel better in a moving vehicle, which loads of us do. Even as a person with no science background at all, it’s totally obvious to me why that happens. With vertigo your body is giving you the sensation of motion when still, if you are actually moving it takes away the sensation. When I have vertigo on sitting, I will often jiggle my leg a little as it cuts down on the vertigo sensation, same principle.

You could always try and talk to Hain or Cherchi by phone, put all this to them and ask if they had any other reason for saying it as it’s worrying you.

H

1 Like

Hey Luke,
I understand your concern completely because I too feel almost normal in a car.

I did want to share 2 things with you:

  1. I know a patient of Dr. Hain’s who is a success story and also felt normal moving in a car. She told him this and he still diagnosed her with MAV. I think maybe wha Dr. Hain meant to say is that this symptom is common in MDDS. Docs word things incorrectly all the time and sometimes they just don’t realize the impact this can have on their patients. Always question!

  2. I spoke to my vestib. therapist who is familiar with working with both MAV and MDDS. He said that yes both diagnoses can present similarly. MDDS usually will get better on it’s own with time and once it does it does not return. People with MAV have can have a waxing and waning long time course and really need migraine preventives to get better.

Given your long history, it makes more sense that you have MAV. I thinking emailing or calling Dr. Hain is a good idea and maybe he can clarify and allay your fear about MDDS.

Best,
Lisa

Yes, getting in touch with Hain might be wise.
Lisa, My vestibular therapist says just the opposite of yours, MdDS almost always comes back after other motion experiences and has been known to last for many years. As far as he is concerned, MdDS is the only one in which people feel better in motion but we all know that is not true.

Frankly, when I read the symptoms, I cannot tell the difference. There was an article by a Dr. Slater that was posted at one time that tried to explain it but I still could not quite grasp how the differential diagnosis was made. It may have been Mikeal who found that article, maybe he could find it again.

Wish none of us had to deal with any of this!!!

Sally

Hi Guys

Thanks for all your responses, which are all very rational.

Its a real tough one to work out. I may even try Pizotifen a 3rd time to see if it does the trick again, if all the other MAv meds fail.

I emailed Hain a few days ago, but he hasn’t got back to me. Pisses me off, I know they are busy, but you know!

Luke

there are many myths about mdds, and a lot of them are being expressed here. However, I also think basing a diagnosis solely on the fact that a person happens to feel better in (passive) motion, is a bit, well REALLY RETARDED hah. I sent luke some more info on this Scott…

— Begin quote from ____

I just don’t buy MDDS going completely and them coming back. I also don’t buy it coming on, in the first instance, a long time after you’ve travelled.

— End quote

Well you should, because it is very unlikely that once you’ve had it, you won’t react the same to say another cruise. The typical way of mdds is that it lasts for a couple of months, then goes away until being retriggered by another motion-event (usually a cruise, but also fairly common with airplanes, cars etc.); it’s much more common to have many episodes if the person also has migraines, which in itself seems to being able to make a person relapse (you have symptoms for a couple of months, go symptomfree for a while but get hit with a killermigraine, and back you are at square 1).
I know people who had one episode after a cruise, lasting for 6 months, then went “into remission” for 35 years(!), travelling all over the world before being struck by lightning again, this time for 3,5 years and counting… How this can be explained I really don’t know.

Most docs would say that symptoms would have to start within 2-3 days of the motion-event. Dr slater (expert) calls the rest “mdds-like syndrome” and there is a very strong correlation with migraine there. Treatment for mdds is pretty much the same as for mav, perhaps with the exception of verapamil. Typically it’s klonopin or amitriptyline that seems to work, but I’ve seen people being “cured” (as long as they stay on the drug) by everything from a combo of topamax and paxil to verapamil to effexor… Sounds familiar?

I don’t buy that VN people would feel better in a car, no way! I might be wrong but this sounds totally against how VN works. I don’t think the more normal mav-cases (episodic only happening ocasionally) feel better in motion at all either, but this is obviously the case for some of us here. However, I highly doubt that the “story of chronic 24/7 mav” is written anywhere near its entirety; I think the bond between migraine and 24/7 dizziness is much more complex than currently expressed. The fact that most here have such trouble finding meds that work, even though most of these supposedly work 80% of the time, just doesn’t add up to me… This has of course NOTHING to do with mdds, I just don’t think the docs really know what the heck is going on, and just because you respond to a migrainemed doesn’t mean its a clearcut migraine-problem,in the same way as just because you respond to an antidepressant, doesn’t mean it’s a depressive disorder…

I asked if anyone wanted to share their typical “mdds” symptoms with us here, and this is the reply I’ve gotten thus far:

Hi! My MdDS is classic motion-event triggered (now 5 1/2 months ago) by a cruise. I feel a back and forth rocking motion, and (to a lesser degree) an up and down bobbing motion (no spinning, ever), and these are usually an exaggeration of actual motion, though I can feel both when I’m standing still and it’s often to the pace of my heartbeat (so faster if my pulse is faster) I developed a very severe headache near the crown of my head during the early weeks of this which is treated with a migraine medication and is now under control, but the headache DID NOT predate or start at the very same time as the sensation of motion. My symptoms get worse with dropping barometric pressure, like thunderstorms, or when it’s dark (since I’m using my eyes to balance), or when I have to look straight down and walk. I feel better riding in a car, but worse when I get out of the car for a while (not that long). I do not try going on boats of any size or kind, even briefly, at this point. Sitting in a bathtub can feel like sitting in a small boat in a stormy sea, and being under a ceiling fan is like being in a blender! Anything that even slightly pushes your body around, like wind, makes you feel the motion much more intensely.

I have no visual issues, myself, and can work on a computer just fine and always have been able to. During the early weeks I had severe cognitive issues (word loss, memory problems, stuttering), but am getting over that, but still have issues if I have to try to walk and lecture or do something complicated at the same time (so trying to balance is still interefering with higher brain functions even if I’m not feeling like it’s particularly hard to balance at the moment). I have trouble regaining my balance if I start to fall over.

During the early months, I felt like I was on a yo-yo string, like gravity itself was effected, or like I was walking on the moon or then weighted down heavily. At times, I felt one side of my body was being pulled to the ground. I haven’t had that in recent months, but I understand that’s common, too.

I had severe neck pain and back of the head pain from muscle cramps and mid-pain and intrascapular pain from trying to balance. Those are mostly gone now, treated with stretching, chiropractic and exercise.

I had never been diagnosed with migraines prior to MdDS, and as I said, my motion sensation started before the headaches came on. Those developed later, and became more severe as my symptoms became more intense and my muscle spasms in general became a pain issue.

I was very fatigued during the early months from the struggle to balance, but am getting past that now though rest is still important and my symptoms can get worse if I really let myself get run down.

I think my symptoms are pretty standard from reading other peoples’ posts. Good luck to your friend!

Gina

Another one:

It has changed quite a bit over the last 16 months, but I will do my best:

When it began:
-Rocking/bobbing/swaying feeling inside head and body constantly
-Feeling of imbalance when walking, like on a tight trampoline or high wire.
-I used to feel like I was standing on a fast ferris wheel and that my feet were
sinking into the floor. Can anyone relate?
-Visual disturbances (everything moving/swaying around me)
-Headaches
-Constant rocking fullness or pressure in my head (this is the worst!)

Now I just feel very slight rocking pressure in my head, a constant subtle
rocking motion in my body, and if I pay close attention (which I try my best not
to do) I can still see things moving slightly in time with the internal feeling
of motion.

Yes, consistently better when back in passive motion. Elevator, car, plane,
boat, monorail, rocking chair, swing, ect. Basically anything that moves. This
is interesting because I used to get motion sick when in the car for more than
an hour, and now I don’t. But I also take a vestibular suppressant during the
trip, so that’s probably why.

Hope this helps your friend! Did he have a motion trigger?

Jennifer
3 hour flight

mddsfoundation.org/MdDS_July2007.pdf

Here is a symptom-survey, suggested by the owner of the mdds supportgroup.

forgive me Luke, but I can’t find your other thread. What exactly did Hain say that makes you think you have MDDS and not MAV?

Rich

I for one am a little confused, what is the difference between MdDS and MAV, the symptoms all seem so similiar, how do you differentiate between the two? Does MAV build and MdDS come on suddenly? I noticed a lot of us seem to have the sympyoms of MdDS.

Tammy

Tammy,

It is so confusing, as the symptoms overlap. I have MAV, which came on suddenly. I guess the key thing is whether you engaged in activities prior that would have provoked the MDDs.

It seems almost impossible to tell the difference. Whatever I have, docs say MdDS with Migaine, started while I was walking up a hill. Is that a motion trigger? Also had two episode of severe spinning dizziness, spinning episodes in the garden, funny feeling while sitting out on a windy day, and tried many migraine meds.

Just hope we find the answers soon as I am over feeling like this and have a hard time feeling that life will ever be worth it again.
Sally

these things, mav, mdds, are just names. Especially regarding mdds they have NO idea what’s going on; so what’s the point of being able to name whatever you have if you can’t treat it. Treatment-options are the same for mav and mdds, though its much more limited for mdds and much more random what works (except klonopin which seems to work for fairly many).

Walking up a hill is definately not a motion trigger; you don’t get mdds from going jogging, I hope! :stuck_out_tongue:

I am not convinced migraine is the ONLY problem with this type of 24/7 MAV either. Well before they can understand what migraine really is, I suppose it could be though. However explaining something by another thing which in itself is almost just as unexplained as the first thing, isn’t really a good answer in my opinion…

Hey Luke,

Off topic but how come you speak fluent german? I used to but am beyond rusty now as haven’t used it for years.

Also, did your illness come on 2-3 days after a boat/plane journey?

Hx

— Begin quote from “MikaelHS”

Here is a symptom-survey, suggested by the owner of the mdds supportgroup.

— End quote

Hi Mikael,

I had a look through this and really, most of the symptoms could apply to all sorts of dizzy conditions. A lot of questions involve multitasking issues and brain function such as memory –– all of which are a nightmare if you have VN, MAV, MD, BPPV or MDDS. I wonder what they used to give a “definitive” dx?

I have a hard time believing that MDDS is that common, but think migraine is the culprit in the vast majority of persistent dizzy issues. Migraine is just too common in the general population.

Scott

Scott,
I completely agree with you that many of the peristent MDDS cases are most likely MAV. I base this on my vestibular therapist’s years of working with “MDDS cases” which ultimately turn out to be MAV. I spoke to another neurologist who is old enough to have seen the WWII veterans return from long tours on the battle ships and he told me that many had MDDS but ultimately got better on their own with a bit of time. I know that Sally’s therapist did not agree with my vestibular therapist’s experience (different opinions are great) but MDDS is very rare and migraine is much more common. MY VRT thinks that migraine is responsible for as much as 25% of all people presenting to dizzy clinics with persistent dizziness.

If we could only have definintive answers with definitive treatments…dare to dream:-)

Lisa

haha I looked through the survey now too, not a very good one I might add. As I know one doctor said, mdds and mav are in the same family, but they are not the same.

I think mav definately is more common than mdds, altough mdds probably isn’t nearly as rare as previously thought of. MAV is almost always episodic though isn’t it (as is mdds), and I’m not sure 24/7 mav is more common than mdds, probably less common even; this I base on what little literature I’ve seen. Most of it doesn’t even mention chronic mav 24/7.

As I said, if you get these symptoms and if they don’t go away on their own, mav is the only real thing you can explore; It’s not like there’s a regimen of “mdds drugs” at ones disposal (Slater says the same drugs are used for both, altough verapamil should only work for mav and never for mdds)… This holds true even if it started after a cruise, and it definately holds true if you have trouble identifying a motion-trigger, as well as having other typical migraine-symptoms (food sensitivity or whatever). BUT, this is also what most with mdds that doesn’t go away do. Some find sucess, some don’t, it’s a big lottery just like here. I don’t know what I have; I felt totally better dizzywise from amitriptyline but got gastritis unfortunately. It also made me think slowly as sh***. Do I have mav? I don’t know, maybe. I’ve seen others getting these symptoms spontaneously on swedish forums, they disappeared after a year or so. Did they have mav or mdds? Not sure.

I don’t think it matters anyway, as long as treatment-options don’t differ you can call it the great dizzyplague for all I care. The definitive diagnosis for mav is when you see treatment working; at that point I don’t think anyone cares what the name is!

ps. I don’t think most mdds ARE mav. However I think that probably a lot of persistent mdds cases might be related to migraine somehow. But this is just a guess on my part. I’ve thought about this for a long long time, probably much longer than has been productive…

Scott, Adam,or Mikael,

Do any of you know of any doctors doing research into the difference between MAV, MdDS, and any other of these vestibular diseases? And how can we get involved.
Sal