I’m not sure if you guys have talked about this yet but someone mentioned to me something called Mal de debarquement. I looked it up and here is one of the websites I found on it: mddsfoundation.org/mdds_comp … ptoms.html
I thought it was strange that the symptoms for this disorder is exactly the same as mine. What type of symptoms and dizziness do you guys experience?
My symptoms are a rocking sensation (like being on a boat) which is continuous and I never get spinning. I aslo thought it was strange because just like with the Mal de debarquement my dizziness goes away when I am driving in a car. I aslo notice my symptoms get worse as the day goes on.
Another weird thing I noticed is that I seem to be better when it is sunny out. I also do a lot better when I am outside then when I am indoors. Idk if this is the same thing for you guys or not? Today it was sunny out for the first time in awhile and I went outside and played basketball for a couple hrs and I don’t think I would have been able to last so long in a gym or inside somewhere playing it. This might be because the lighting is worse than the acutal sunlight for me or maybe I am more anxious inside? I tend to get dizzier when I am around a crowd of ppl and have to sit still. In class, at movies, at church, meetings…I was wondering if this happend with you guys? I always want to get up and leave bc i am dizzy but idk if that is anxiety or if it is just the MAV?
My symptoms were the same. I hate sitting still even now with my flareup. But when my symptoms started in 2008, they were much worse. I felt like I was walking on a boat dock, rocking, general dizziness, motion sensitivity, a feeling of heavy headedness, I always felt “off”. I stopped going to church for a long time, I couldn’t sit. I can’t right now either with my flareup. I always feel good when I drive. hain told me the symptoms of mdds are similar to mav. I hate going to stores and if I go, it is hard to stand still in the checkout.
I had a long string of 100% days and some 90-95% days for months. My good totally outweighed the bad for months. I had my life back. I am working on getting there again. I swore by Verapamil and still do. i just think my triggers overpowered it when some crisises occurred in my life recently. I think now mine is mostly anxiety. I know anxiety increases dizziness and can cause it. i was told this from 3 doctors, including hain and a counselor i am seeing for anxiety. Me worrying about mav even tends to bring it on.
Ashley - I have EXACTLY the same symptoms as you, and also less dizzy in a car, more dizzy in crowds, less dizzy outside, etc. I was assured by many top specialists that I definitely have MAV.
I still do not see the difference between the two and have been diagnosed with both depending on which doctor I speak with or see. I am always told I have a migraine brain regardless. In Boston, three doctors at MEEI, two migraine, one MdDS. In Chicago, both. In a number of other places - “I simply do not know.”
Hain’s web site on MdDS says he’s had recent success with Effexor, ummm. Have script and have been afraid to start it.
lol if I didnt know any better, id say hain was payed by the company to promote effexor LOL (obviously not true though!!!). He must be seeing some success that ppl here aren’t, god knows why.
There is currently research being done on MdDs. Hopefully sufferers of Mav will be able to benefit from it as well.
Im not sure, but I think the plan is to locate the problemarea of the brain, and then treat it with repetitive magnetic stimulation (tms). Only time will tell if it works.
That’s crazy the symptoms are so close. Well I’m glad I have found some ppl that have the same strange symtoms I have (although I wish we didn’t have to go through this).
Nance - I understand what you mean by the anxiety. It’s a vicious cycle. It’s hard to know if the anxiety causes the dizziness or the dizziness brings on the anxiety. I know MAV causes us to be dizzy which makes us more anxious and in turn more dizzy. Which can also be made much worse when we are going through some hard times in our lives.
MikaelHS and Sally - Is Hain a neurologist who knows a lot about MAV? That sounds like an interesting study and I guess we just have to wait and see.
I do know some1 away from the board who had great results off effexor up to 95% so yes it does work for some just people dont post about it on websites which is a shame .
But just because it wont work for someone else dosent mean it wont work for you , the docs did tell me dont read the side effects as you start to imagine you have them even if you dont easier said than done i know.
I was on prozac before for depression and anxeity and it was fantastic i got one side effect and thats it . I didnt read the side effects i just took it as i knew i would scare myself lol
But yes I hate sitting still its awful my family moan at me as i ‘never relax’ but I cant its so hard !!
Sally…one difference between MAV and Mal de debarquement is i don’t believe folks with Mal de debarquement have episodes of Vertigo or Vertigo like symptoms. Many (not all) who have MAV have vertigo…especially if we don’t follow our diet, stress, etc. I had not been to any 3d movies so decided to take a riske and see “Alice in Wonderland 3d”…the next morning while in bed…i turned over to my right side and the room began to spin. I believe the movie was too much stimula for me having MAV. So no more 3d movies for me…i’m done!
Thanks, Joe. I rarely have true vertigo but had two severe attacks leading up to the permanent rocking stage.
One week on a very low dose of Effexor and I feel awful but have to give it a bit more time. Don’t know if I could ever get enough in me to have it work. It feels rough.