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How many of you can relate to this video? (MdDS)

#1

When I see videos like this I (temporarily) become absolutely convinced I have Mdds, and, quite frankly, begin to freak out (given Mdd’s very poor prognosis). The video completely captures how my ‘dizziness’ feels and ‘looks’.

Should I take solace in the fact that my symptoms did not start after travel? I often read that about 50% of Mdds cases start spontaneously anyway.

I suppose I do fit the ‘migraine’ hypothesis better (since I do have daily classic migraine headaches, and tinnitus, which is usually taken as a sign that your issues are from ear trouble rather than Mdds according to the Mdds organisation). But after I have failed so many migraine meds, I really am beginning to wonder…

Does anyone have any reassuring takes for me :joy: ?

Best,
D

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#2

This article: Management of Mal de Debarquement Syndrome as Vestibular Migraines may interest the group too.
D

#3

There are so many of these conditions that appear to be very similar and probably on a spectrum.

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#4

I was thinking about this, and thought I should therefore maybe try Effexor since it is said to be a strong treatment for virtually all of them (MAV, PPPD, MdDs, Classical Migraine). I suppose I will raise this with the Neuro at the next appt

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#5

Yep. Stop watching scary videos. You are under a neurologist and presumably have a diagnosis. You are trialing these new injectables stil. You are trying very hard to find a preventative to improve your quality of life. So you are doing everything you can to improve your situation. Relax and try to find some interesting entertainment unrelated to MAV. Helen

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#6

Sage advice as always. Helen you are our resident Stoic Philosopher, and I love it.
Best wishes,
D

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#7

Yeah, I actually describe my symptoms as MdDS-like to medical professionals, because many times its more well known then MAV. I’ve also been super worried about having MdDS at times. Either way, MdDS, PPPD, MAV, etc… are so similar that treatment is nearly the same, it doesn’t change much so I stopped worrying so much.

#8

My neuro told me that a lot of specialists think about it as a spectrum, so PPPD, MdDS, MAV seem to be similar. Look for a rocking dizziness article I posted here a while a go, there is a high co-occurrence MdDS and migraine. Effexor is used to treat all of them as you said. I don’t think it is a scary video, I like the scale the MdDS foundation has about symptoms, because it has helped me assess my own progress. Here is the link: Rocking After Travel? You May Have MdDS - Learn the Signs & Symptoms
Also, the foundation is the one pushing for research in this area, and there is treatment available with somewhat good results: MdDS | MdDS and Motion Sickness

My neuro told me she could put a referral for me. It is costly, but it is an alternative. I am right now waiting to be seeing at Duke for a second opinion, but also think that with time it will be less and less since almost all other symptoms have improved.

Give venlafaxine a good try. I am on 150mg, I titrated up over 4 months, and it has been 8 or so months now at that dose. Insomnia is a little bad at the beginning, CBD helped with it. I would say that now my only problem is weight gain, I have gained a few pounds, seems that every carb I eat is multiplied by 20. But I have been running and trying to control my diet, so the weight gain kinda stopped a little.

Best,
Laura

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#9

Hi Laura. Think you might have been meaning your latest post to go to @d.powell, not me? I didn’t view the video but as it seemed to have caused d.powell to ‘freak out’ just assumed he’d found it scary. Or at least its inferred implications so. Helen

#10

yeah it was to him, but I think he can look at it since it is his post. There are videos that are scary but the mdds foundation info is pretty good.

#11

Interesting you say mal de débarquement has a poor prognosis. By coincidence today i was speaking to my dentist who said he had had rocking dizziness after a ferry crossing, it lasted 3 months and then resolved of itself. This was the second person who told me about mdds after the very same ferry crossing, and both times they told a story of horrible sensations but lasting less than a year. Made me wish I had that, instead of MAV. But yeah so much is unknown about these conditions.

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#12

Well dr s dosent believe in mdds and says it’s more likely mav ! My rocking / symptoms aren’t made better by a car those as my eyes are all over the place and I think mdds is rocking that usually goes away when lying down plus it’s main symptoms is rocking that’s it ! Hopefully that gives some reassurance :grimacing:

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