Diagnosed with MdDS - looking for advice

[HeyJude1968]

Hi I've just been diagnosed with MdDS after 11 weeks back on land and still rocking and swaying. As no sickness pills or nausea meds work for this syndrome I was looking for some advice from others who have actually been diagnosed with Mal de Debarquement Syndrome and have had success in dealing with or treating the symptoms. The only time I feel normal is when I'm driving in my car, which is typical for this syndrome, and have actually driven around and around the block when it has gotten to bad and I haven't been able to cope.

:(

[Aussieflyer]

What a terrible thing to happen - so sorry. I expect you already have checked out the support sites (UK and US - not sure if we have one in Au). It does say that the condition is "self limiting" which means it will eventually resolve itself but with no idea about when it must be very frustrating.

Hope you can find some information that helps you.

[fishtaco]

Must be Vertigo of sorts brought on by a cruise:confused:

 

This would mean you cannot cruise again even though you would be free of symptoms while on the cruise!

 

Claim it on Travel insurance and you may be able to cruise indefinitely :D:D:D

 

Den

[HeyJude1968]

Thanks Aussieflyer - I have researched as much as I can on line and have read everything I can find. The sad thing about this is nothing really works to as far as I can find out anyway to help mach the symptoms go away - My Specialist has put me on a low dose anti-depressant to help cope but it's certainly not a long term solution.

This was my fifth cruise and I didn't expect to be feeling this way 11 weeks later, my "landsickness" has previously lasted no longer than 24 hours - this happens all day and night - wether I'm sitting, lying down and as you can imagine walking on some days is a bit of a challenge. Some days are less rocky than others and at first I thought when this happened it was going away. Thats the cruel thing about this syndrome you never know when it's going to end.

[HeyJude1968]

The worse thing is all the tests that I had to have done would have paid for another cruise lol

[Aussieflyer]

Having all the tests (at great cost no doubt) must be very annoying. Are the costs recoverable on travel insurance? Interested to hear as it is obviously a result of your trip but then again I know that some insurance companies would have it covered in the fine print!

[theldaken]

Sea Bands?

[Billy and Charlie's Mum]

It might sound silly but have you tried a Chiropractor? I was suffering with vertigo for weeks and medication was not helping. I went for my monthly "tune up" and told him about it.....he fixed it in minutes. I was astounded.

 

Worth a try if it gets too much for you, l know it drove me to distraction! I was kicking myself for not going to him sooner.

[dizzy1948]

It might sound silly but have you tried a Chiropractor? I was suffering with vertigo for weeks and medication was not helping. I went for my monthly "tune up" and told him about it.....he fixed it in minutes. I was astounded.

 

Worth a try if it gets too much for you' date=' l know it drove me to distraction! I was kicking myself for not going to him sooner.[/quote']

 

I'm with you - Chiro's are so under estimated - yet they put more time in training than a Doctor. I've read about the OP's dreadful condition only recently in the UK Sun newspaper - not that that particular sufferer was seeing any light at the end of the tunnel either. But a Chiropractor would be my choice. It may not change on the first visit - I would be going there if it happened to me - and doing at least six visits - that would give an indication. Even googling what a chiro can find and fix that a doctor can't is absolutely amazing. Give it a go - nothing to lose. Yes, I am biased - I swear by them - but that was after many years of doctors messing me about with of all things -extremely painful digestive issues. Go figure.

 

I do hope the OP finds a resolution - and soon

Edited April 26, 2013 by dizzy1948

[Kiwi Kruzer]

The worse thing is all the tests that I had to have done would have paid for another cruise lol

 

Hi Jude.

Not a nice condition to suffer and my thoughts are with you.

Just as a suggestion it may be an idea to ask about this , on one of the American boards...perhaps the Princess Cruises board. You would reach a much bigger group of the cruising population.

I seem to recall reading about someone who had this many years ago on Cruise Critic, and they may be able to help ,or someone may remember the outcome.

 

 

[K-Roo-Zers]

Hi I've just been diagnosed with MdDS after 11 weeks back on land and still rocking and swaying. As no sickness pills or nausea meds work for this syndrome I was looking for some advice from others who have actually been diagnosed with Mal de Debarquement Syndrome and have had success in dealing with or treating the symptoms. The only time I feel normal is when I'm driving in my car, which is typical for this syndrome, and have actually driven around and around the block when it has gotten to bad and I haven't been able to cope.

:(

 

Hi,

 

So sorry to hear about your disorder. It is awful. I had a very nasty virus years ago and it destroyed part of my labyrinth so I constantly feel as if I am on a ship. I saw a balance specialist in Sydney who was wonderful, and knowledgeable and even though he wasn't able to cure me, he gave me some good advice. I realise you live in Adelaide, so perhaps a Chiro may help, but if you need the name of the specialist I saw, I would be happy to provide it. Just email me at nicster@internode.on.net

 

Good luck with sorting it out as it is nasty and I do feel for you.

 

Nicki

[Tigerman00]

http://chealth.canoe.ca/drug_info_details.asp?brand_name_id=1333

My wife got this after a cruise and it went on for weeks, we were back and forth to the doctors every second day with no results, she could not even stand up.

In the end I search the internet and found SERC 18 (see link) I went back to the doctor and demanded these tablets, reluctantly they were prescribed and they she started to feel better little by little each day.

When I asked the doctor why they did not prescribe them straight away, they came up with a load of crap about ruling out other things.

ALL I CAN SAY IS GET THEM AND TRY IT, IT WORKED FOR US.

Ken

[Billy and Charlie's Mum]

http://chealth.canoe.ca/drug_info_details.asp?brand_name_id=1333

 

My wife got this after a cruise and it went on for weeks, we were back and forth to the doctors every second day with no results, she could not even stand up.

 

In the end I search the internet and found SERC 18 (see link) I went back to the doctor and demanded these tablets, reluctantly they were prescribed and they she started to feel better little by little each day.

 

When I asked the doctor why they did not prescribe them straight away, they came up with a load of crap about ruling out other things.

 

ALL I CAN SAY IS GET THEM AND TRY IT, IT WORKED FOR US.

Ken

 

Yes, I was on SERC 18 after trying other medications. It took away the nausea but it didn't stop the dizzy spells. The only thing that stopped it was my Chiro.... it is to do with the middle ear, he explained why he did what he did and it made complete sense.... medication won't cure it. Try a Chiro, don't suffer for weeks or months. When I told my doctor about what my Chiro did he said "yes, that is a known treatment" :eek: Well Duh!

[MicCanberra]

Sorry to hear that you suffer from this (I had no idea it even existed), it must be terrible. I hope you recover quickly.:D

[HeyJude1968]

I was put on serc the 3rd week and took them for 6 weeks in total but unfortunately they didn't help in any way at and I've since found out from the sepcialist I'm seeing and the MdDS websites that they dont actually work for true MdDS - None of the typical Balance drugs or Seasickness Drugs work for MdDS - I'm going to try some physio and acupunture as some people have found this helps cope whilst not actually getting rid of the symptoms.

Thank you all for your comments so far.

[metter]

I was put on serc the 3rd week and took them for 6 weeks in total but unfortunately they didn't help in any way at and I've since found out from the sepcialist I'm seeing and the MdDS websites that they dont actually work for true MdDS - None of the typical Balance drugs or Seasickness Drugs work for MdDS - I'm going to try some physio and acupunture as some people have found this helps cope whilst not actually getting rid of the symptoms.

Thank you all for your comments so far.

 

I suffer from BPPV occasionally which sounds similar. Medication does not help. I saw a neuro physio and the specific exercises / movements he performed worked a treat. I am in Adelaide. Let me know if you want his details.

 

Hope you feel better soon

 

Sent from my ASUS Transformer Pad TF700T using Tapatalk HD

[Sandielle]

I was going to suggest acupuncture but I see you have decided to try it, Jude.

I hope you soon have some success.

[Aus Traveller]

My daughter suffers from this for several weeks after each cruise. As she is a fitness trainer it is very difficult for her to work. She tried anti-histimine and Serc and nothing helped. It eventually went away.

 

I am wondering whether the simple exercises for BPPV would help. My mum-in-law and husband have both used these exercises for vertigo caused by BPPV and the relief is almost instantaneous. I didn't think of suggesting this to my daughter but I will if she goes on another cruise. If anyone is curious what I am talking about just Google 'Benign Paroximal Positional Vertigo'.

 

By the way, I suffered from BPPV for a couple of decades and no medicos could suggest anything that helped even though I had expensive tests etc. If only I had known there was a simple answer.

[MicCanberra]

The human body is amazing and some of the illnesses are incredible, I never knew all these acronymed ailments existed to torment cruisers.:D

[HeyJude1968]

I suffer from BPPV occasionally which sounds similar. Medication does not help. I saw a neuro physio and the specific exercises / movements he performed worked a treat. I am in Adelaide. Let me know if you want his details.

 

Hope you feel better soon

 

Sent from my ASUS Transformer Pad TF700T using Tapatalk HD

 

Yes please would love the details of your physio my email address is judithhassall@yahoo.com.au thank you very much.

[Billy and Charlie's Mum]

My daughter suffers from this for several weeks after each cruise. As she is a fitness trainer it is very difficult for her to work. She tried anti-histimine and Serc and nothing helped. It eventually went away.

 

I am wondering whether the simple exercises for BPPV would help. My mum-in-law and husband have both used these exercises for vertigo caused by BPPV and the relief is almost instantaneous. I didn't think of suggesting this to my daughter but I will if she goes on another cruise. If anyone is curious what I am talking about just Google 'Benign Paroximal Positional Vertigo'.

 

By the way, I suffered from BPPV for a couple of decades and no medicos could suggest anything that helped even though I had expensive tests etc. If only I had known there was a simple answer.

 

Yep... that is what I had! The chiro fixed it in minutes by tipping my head over the side of the table etc..... worked a treat.

[MicCanberra]

Yep... that is what I had! The chiro fixed it in minutes by tipping my head over the side of the table etc..... worked a treat.

That is good news. Sounds like the chiro is worth a try at least.:D

[annenic]

My husband suffers with Meniere's Disease - sounds pretty similar as it also affects the ears and causes nausea and vertigo. His specialist has him on a salt-free diet - says nothing else really works because it is all to do with fluid in the ears. This diet allows David to manage this awful debilitating illness - he can now ride his bike again and still go sailing etc - there was a time he could not even stand up!!

[Aus Traveller]

Yep... that is what I had! The chiro fixed it in minutes by tipping my head over the side of the table etc..... worked a treat.

The exercises for BPPV involve lying on your side on the bed for a length of time (maybe it was 30 seconds but I'm not sure), then turning to the other side for the same amount of time. I was stunned at the immediate results. Even on our last cruise my husband had a touch of vertigo. He did one set of exercises and it was gone immediately.

 

Maybe I should put a disclaimer - I am not giving medical advice, but doing a few exercises won't hurt and it might help. :D

[kjets]

I am so sorry that you have this! This is going to sound like a hoax but believe me it is not as I suffer with Meniere's Disease. I have been using a medication that has kept me upright with no movement now for over 2 years and it is...Sildenifil aka ****** ear drops! Ask your GP for a script and take it to a compounding pharmacy. It costs about $70 but it is well worth it, and I do get get a rebate from my health fund. If you need a copy of my prescription I will be happy to share. This is a life changing medication with no other side effects except to stop the vertigo in its tracks!