Mal de debarquement syndrome

[Tmp1]

I've been diagnosed with mdds (mal debarquement syndrome) I also suffer from vestibular migraines and aura my symptoms are 24/7 theres no treatment I've tried that helps 😥 I'm waiting for an MRI at present is there anyone out there like me? I need tips or advice on how to lessen my symptoms 3 years I've had this debilitating condition help!

[wobblybee Administrator Pioneer]

😕 I empathise, I’m also challenged by Vestibular symptoms, but due a different diagnosis. There isn’t any cure for my condition. In the past I have tried various Vestibular therapies but haven’t had any change.

[Tmp1 in reply to wobblybee]

It's so frustrating the mdds hopefully will go away but can takes years I do go into remission every now and then but itll be triggered again and I cant pin point what's setting it off I'm on a constant motion ride my head feels alwful I'm done with it its causing me extreme anxiety I'm always worried I'll pass out when out and about so I tend to stay at home I'm a mum of 3 so it's so challenging to live with this 🤦‍♀️ I've changed my diet to a migraine friendly diet and my doctor has put me desogestrel as during my period my mdds symptoms were horrendous it's been 3 weeks so no noticable differance yet same with the diet it's been a few days 🙏🤞

[wobblybee Administrator Pioneer]

🤔 I realise that there’s a likelihood of you trying everything available, but I’m posting this info on the off chance you haven’t seen it.

Currently, there is no single highly successful treatment approach for mal de debarquement.1 Standard drugs prescribed for motion sickness (including meclizine and scopolamine patches) are usually ineffective in stopping or even decreasing the symptoms.5-6 Some treatments that have shown promise include vestibular rehabilitation, the use of benzodiazepines (such as valium), and the use of tricyclic antidepressants (such as amitriptyline).1,5

Copied from vestibular.org

[Tmp1 in reply to wobblybee]

Yes I'm aware.. thankfully for me I dont ever get sickness from it it is litrally a case of time and just retraining my brain to get used to to eveyday situations etc the only relief I get is going on a car journey ironically it was a car journey that very first triggered mdds for me

[wobblybee Administrator Pioneer in reply to Tmp1]

😯 I’ve read that about the car journey giving relief...so strange. These days there are so many different types of support groups..have you come across anything for mdd..I’m a member of several relating to the condition I have. None of us have any hope of a cure, but we totally get it when someone is talking about symptoms, and what they feel like.

I searched Facebook, and there are several links if you type in Mal de barquement. You might find helpful advice 🙂

[WellTodayGirl]

Hi. I suffer with mdds and migraine. I have been told by a top neurologist that the two are connected. I am sorry that you have it too, it's rotten.

I get mdds after any trip on the water, a long haul flight and sometimes a car journey. When I have it really bad, I find the only think that helps is to do the eye exercises that are given to people who suffer with vertigo. Also, I have been told that getting on a bicycle can help. I've yet to try that one though, so I cannot vouch for it. It resets your balance apparently.

Migraine, well for me, only botox helps lessen the symptoms but of course that has been cancelled at the moment. Interestingly enough, I found that Botox also stops me from being sea-sick but unfortunately it doesn't stop the mdds.

Hope you feel better soon.

[Tmp1 in reply to WellTodayGirl]

This definitely is a rotten condition to have isnt it I hate it.... it was bumpy car journey that very first triggered mdds for me 3 years ago it went away after about 4 months I was absolutely fine for quite some time then last june I got I'll with a really bad cold and bam it came back with vengeance I've had good days and really bad nothing helps sometimes I'll go fir a drive and it will settle other times itll actually trigger me more I feel like cant win.. to much sleep or to little is a huge trigger for my mdds to as for the vm I'm not entirely sure what's setting them off some foods like cheese to much chocolate and cheap wine that's all I've pin pointed so far 🤦‍♀️

[WellTodayGirl]

I have a friend who has it. She won't go in a car as a passenger and always has to be the driver. She reckon that helps.

[Indian1991]

I am having MDDS since 3 years .. I am 30 and having T2D. You will feel very frustrating initially for few months but later your brain will start adjusting with the new normal. MDDS does not have any cure and people generally take veniz 150 mg after consulting with neuro.

[Tmp1 in reply to Indian1991]

I've had mdds for 3 years nu brain definitely hasnt got used to this horrid feeling constantly it's worse now than it was a couple years back

[Indian1991 in reply to Tmp1]

What medications are you on? DM me so that we can discuss.