Mal de Debarquement vs MAV case study - me!

Specific Illnesses & Conditions
1

Hi Boys & Girls

Ever since Hain mentioned MDDS could be part of my issue, I have been trying to examine my case a little more closely, especially in view of the fact I havent had much luck with migraine preventatives thus far.

So if I have MAV the case for is:

I started Pizotifen back in 06 and over 4 months I was totally normal, albeit very fat.

It started out as some sort of VN type illness, and didnt begin after a long journey or boat ride. In fact I was at work when I first got ill.

I have had more headaches since having MAV than ever before in my life

I got car sick as a child and do still sufffer frm motion sickness

So if I have MDDS the case for is:

I feel better when in motion, driving a car or motorbike poses no issues. I drove all the way from the UK to Italy last year.

Verapamil, Depakote, Amitrptyline have all failed to do anything for me.

I didnt suffer migraines as a child. I dont have reactions to any food that Im aware off.

Pizotifen failed to work the 2nd time round, so did it work at all? Did my presumed MDDS clear up on its own back in 06? When my syptoms returned I was med free for 8 months and **travelling in a car ** MDDS is known to come and go, but so is MAV.

So its all a big mystery.

My process will be one of elimination. I will try every MAV med possible, and Piztofen again until I work out which one it is.

The bad news is that if its MDDS, there is no hope for me at all. Altleast MAV can be controlled.

Im currently on 25mg on Topamax - no chabge in symptoms yet, but it takes time.

I determined not to be robbed of my life by this. I will have a good job and keep it, marry a beuatiful woman, and have a great family. Its just a long path to finding it! But if I whinge along the wya thats me being british!

Let me know oyur thoughts or if you can relate to MDDS at all. Its a tough one to call.

Luke

2

Hi luke,

Why if you have mdds do you think you have no hope, like you said it went away once why would/couldn’t it go away again? Also if you think it’s mdds have you considered trying that motion sickness patch? I would think (maybe) it could help find out. Good luck!

Tammy

3

Very interesting.
I myself was originally diagnosed with VN.
I got a secondary diagnosis 2 months later after physical therapy did nothing. My secondary diagnosis was MAV.
I had migraines when I was younger, every day in fact, but no other symptoms.
I have always been EXTREMELY sensitive to motion all my life.
The wiered part for me is that, I too feel better in the car when driving. In fact, it is the only time I feel even a teensy bit normal.
My symptoms started the day after I had an upper right wisdom tooth pulled. It took two hours and the doctor just used Novocain.
Is the onset of Mdds always related to travel?
PS I too am determined not to let this control my life… I’m 27 and not ready to give up yet :stuck_out_tongue:
Sarah

4

I mean no hope in the sense, it will keep on coming and going probably ( well lets hope not). I find the psycological effect of not knowing when you are going to get hit is damn hard, you can rebuild your life, like I did, anbd then it goes to balls again. Thats the issue.

I would love a clear cut case of VN or MAV - atleast I know what Im dealing with.

5

Luke, pm me if you want me to give you some more info on mdds and migraine from higher sources. I can’t post it here cause it wasn’t for this page.

6

Hi Luke,

If it does happen to be MdDS - don’t be so negative! I have MdDS and live in hope, and work hard each and every day with this illness. I take the right medication (for me), go to a chiropractor/kineseologist twice a week, and am slowly but surely pulling myself out of this. People who read a lot of tripe on forums (and I don’t mean this one) tend to think MdDS is something that has to be lived with or tolerated. Not so! I have no intention of giving in to this for one moment.

I also have an appointment to see Dr. Halmagyi in Sydney in July. However…I hope and INTEND to be over it by then, so the appointment won’t be necessary.

In all the reading I’ve done, and the research, it really doesn’t sound to me like you do have MdDS, if that’s worth anything. And I wish you all the best to find a proper diagnosis.

Kathryn :slight_smile:

7

I am the moderator of the yahoo groups MdDs support group and I just wanted you to know that there have been some reports of successful remissions using various therapies recently. TMS (trancranial magnetic stimulation)has worked, FSMT (frequency specific microcurrent therapy) has helped, neurofeedback - a form of biofeedback has worked. A few members have had success using a combination of neurontin and clonazepam.

I saw Dr. Hain in Feb 2002 and he diagnosed me with MdDS but said it was also possible I had MAV since I started getting headaches after my cruise. I was 50 at that time and had never had a migraine before in my life and I am not prone to motion sickness. I eat anything and everything and that doesn’t seem to bother me and now I only occasionally get a migraine. When I have a migraine the MdDS symptoms are much worse. I have a constant sensation of motion except when I lie down or recline. For several years I felt motion no matter my position. I’ve had numerous ENGs and have some nystagmus noted but nothing severe. Had hypofunctioning of the right vestibular nerve in 2003 which is now normal.

I don’t know how doctors can differentiate between MAV and MdDS because the symptoms seem so similar. I even get some swirling sensations especially if I bend down and then stand up straight.