— Begin quote from “joseph0952”
I read your story and your share in the Motion Sensitivity post and i can relate to some of your symptoms. The Wave-like symptoms that you have…i can identity with. My condition started out with occasionaly waking up in the wee hours of the morning with vertigo (1989-1991)…and then in 1992 had another severe case of waking up from intense vertigo and approximatley a half hour later i began to feel the rocking…wave-like motion and much of it is felt in my head. I feel like i’m moving…not the outside world. What has helped me the most over the years is anti-anxiety medication…i understand it helps to suppress the vestibular system. So many of us who have MAV or mav like symptoms…i soppose this headache like condition affects our inner-ear to some degree. Without medication i would be homebound. Not only do i have the wave-like motion…but my mind and inside my the head does not feel relaxed. There is always a tension like feeling.
Timeless…i can feel the Pultzing like sensation in my head (as if i was having a headache)…but i mostly feel tension and motion and no pain. Guess that is why for many of us Mavr’s this is a Silent Migraine. I don’t have the run of the mill excrutiating migraine. I am one of these people who has never outgrown Motion Sickness…mostly in curvey car rides in mountains, carnival rides that ago in circles and spending time on a fishing boat. Most people out grown this but i understand from my doctor than a significant portion of folks diagnosed with MAV have had a troublesome past with motion intolerance. That is me to a tea!
I was initially diagnosed with Panic Disorder…then a few years after that i was told i have Inner-ear dysfunction w/anxiety and another doctor thought i might have a severe case of Benign Positional Vertigo (which my symptoms seem very similar to some degree). But in 2006 Dr. Robert Baloh at UCLA diagnosed me with “Migraine Equivalent”. I tried Amptriptyline but no help. I have started seeing a new Neurologist at the VA hospital i go to and he wants me to start Topamax…25mg per day for a week and then increase it by another 25mg and so on till i reach 100mg. I am going to begin this med after Thanksgiving. I admit…i’m a little nervous but if for some reason i can’t tolerate it…i will let the doc know and stop it.
I have also had Panic like symptoms…particularly when i feel like i’m going to go into a vertigo like spin at work or a movie. That does not happen very often anymore…but it use to be more common. My vertigo has dropped off considerably over the years but i still have the rocking/wave-like motion. I am taking one tab of Xanex per day and Verapamil.
How did your condition initialy begin? Was there a fair amount of vertigo at first? Have you always been motion intolerant? Along with your wave-like motion…do you feel a mild pultzing like feeling in your head?
— End quote
My motion issues started to an extreme last November.
I do not remember being real motion intolerant before that time. But I do not like the Carnival rides, etc so I just avoided them.
Yes I have the pulsating in the head issue most of the time and it can be scary at times and others it is just annoying. But I never know when I am going to have a full attack so my schedule is very limited as that is the main reason I am out of work.
I did have the run of the mill excruciating headaches until I changed my diet and that has helped a great deal. The only time I will get one of those now if I am exposed to fragrances of any kind and then I am done. Nausea the whole nine yards.
I am thinking that the anxiety medication would help with the being scared or paranoid all the time.
The wave like motion is so hard to make others understand as there is no outsides signs that anything is wrong until I reach that high level of anxiety then it is obvious , as my husband said he can see it in my face and eyes when I get to that point.