Could I have MAV?

Specific Illnesses & Conditions VM/MAV
1

This is my first time posting here and was just wondering if anyone could help me. I’ve had dizziness and occasional positional vertigo for the last two years. It all started in March of 2005 when i woke up in the middle of the night with vertigo while rolling over in bed. I had positional vertigo for 4-7 weeks with sensitivity to sound and light, general dizziness, which eventually got better. After a few months of feeling almost myself I started getting new symptoms. Feeling of being on a boat, constant unsteadiness, feeling of rocking when I’m sitting still, still had sensitivity to light and sound. Didn’t have another attack of positional vertigo March 2006 when my boyfriend flipped a u-turn and set it off. My vertigo has always been positional. I’ve been to several doctors and one diagnosed me with labyrinthitis which I know I don’t have…can’t have it for 2 years straight. Lately I’ve been putting two and two together and think I may have MAV. I’ve been getting headaches the last 6 months sometimes severe. Always more dizzy with headachs and light sensitivity and sound sensitivity always present with headaches. Also present with headaches is motion intolerance and blurry vision in one eye. Thinking back I’ve always had problems with carnival rides, car rides, but more recently I can’t even turn my head quickly without feeling dizzy. If I have a headache I have to turn my head really slow because I feel like I’ll lose my balance. I’ve also been thinking back to when I was younger and remember a time in 8th grade when I went to the doctor for headache/dizziness…had neurological tests (normal) and had MRI (no lesions or tumors). Could I have had migraines back then? The one thing that I keep going back to is the constant dizziness and light and sound sensitivity (2 important symptoms of MAV). I also am more dizzy around my period. I also heard that could be related to MAV. I’ve been researching my dizziness for 2 years and just came across this website and I feel out of everything I’ve researched MAV seems like a perfect fit. It seems like the one that makes most sense. I don’t think it’s Meniere’s because I don’t have hearing loss but I do have tinnitus. I made an appointment with my doctor for Monday but I’m afraid that she will just dismiss my concerns. It doesn’t seem like people have very good luck getting a MAV diagnosis since a lot of doctors don’t believe it exists. I just want to get some of the medication that is recommended and try it to see if it helps. I’d given up on finding what is wrong with me until I started researching MAV. It’s definately a breath of fresh air and I feel like it is exactly what is ailing me the last 2 years. Does this sound like MAV? Any advice would be appreciated.

Thanks

2

daisy,
A lot of your symptoms sound very familiar. I have had dizzyness and sensitivity to light and sound for five years now. It wasn’t until I had a seizure and went to see a neurologist that these symptoms were diagnosed as MAV. Migraines often go hand in hand with epilepsy but I developed the migraines right after I had my twins. I too have my occurences around my menstrual cycle but I also have symptoms when I ovulate too. Any fluctuation in my hormone levels sets me off. Riding in cars is really hard on my bad days because it is like I can not block out the things in my peripheral vision. Rows of trees on the side of the road are the worst. I was lucky in that my neurologist diagnosed me and I had never even heard of MAV so I didn’t have to convince anyone that I had it. It still has not helped to get me a mircle cure though. I am on Depakote for my seizures, which also is supposed to help with migraines, and Topamax for the migraines. They have eliminated my seizures but not the migraines. I still have at least 2-3 days every 2 weeks that I can hardly function. Topamax has helped to lift the brain fog that was over me for the other days in the month when I could function. Good luck, hopefully you will find a good doc. You may want to go will some info of your own on the subject if you think that it is what you have.

3

Hi Daisy,
That is what I have been diagnosed with too. I am off everyday and have been like this for well over three years. Sound sensitivity sometimes, light and motion sensitivity all the time, off balance, vertigo attacks, tinnitus, facial numbness the works. Originally I was diagnosed with Meniere’s disease, but I have no significant hearing loss. Previously I had migraines with auras only a few a year starting about ten years ago. Would have a perception of wavy lines, spots, diagonal brs, swirling colors and then a three day banger. That stopped and got replaced by this…I have no headaches now. Been on several drugs to no avail so far.

4

Thanks for your responses. What a frustrating thing to deal with. I went to my doctor today and told her about the research I’ve done on MAV. She’s never heard of it. She thinks I have benign positional vertigo but said she would prescribe the medication anyway. I have a prescription for amitriptyline. Has anyone tried that? I’m hoping it will help with the constant dizziness. I’m keeping my fingers crossed!!

I’m curious as to why so many doctors have not heard of MAV. That really baffles me since there are so many people that suffer from it. Anyway, thanks for your responses and I’ll let everyone know how I do on the meds.

Thanks

5

Hi Daisy,

My symptoms are somewhat similar to your story. Started out having an occasional episode of vertigo (waking up from sleep in middle of night). I would become extremely sick to my stomach and have to visit the restroom. But within 2-3 days i was back on my feet and return to work. From 1989-1991 i has approx 2 of these attacks per year. Then in 1992 i had another severe episode of vertigo (waking from sleep…again) and feeling very sick and vomited. After 30 minutes or so i began to feel this rocking motion and much of the motion was felt inside my head. Like a ping pong ball going every which way. From there on the motion became chronic with occasional vertigo. I was first diagnosed with Panic Disorder and a few years later was told i have Inner-ear dysfunction with anxiety. Just recently in March of 06 i visited UCLA and saw a Dr. Robert Baloh where he gave me a diagnosis of “Migraine Equivalent”. Even though i don’t have much in the way of headaches…it appears i get the motion instead. I also have never outgrown Motion Sickness. As a kid i would get sick driving in curvey mountians…also sick on carnival rides that go in circles. Plus on a boat i would get nauseated.

I have been taking Elavil (anti-depressant) for one year and since i am very senstivie to medication i have been going very, very slowly with increasing the strength. I am presently on 75mg. Doctor would like for me to reach 100mg if i can. The improvements are i don’t have the Brain Fog like i use too…plus the rocking seems a bit less. I am taking less Xanex and seems like i don’t think about the condition as much as i use tool. Still no cure but some small improvemetents.

Joe

6

Both my daughter and I have MAV: she had parxoysmal vertigo as a child, developed classic migraine, and then after an episode of status migraine, had vertigo for over a year. I had nerve damage in my ear 30 years ago, had bouts of positional vertigo, and then developed chronic vertigo after a bad bout of positional vertigo brought on by a yoga class in 2003. I was finally diagnosed by an otologist at Mass Eye and Ear, Dr. Rauch.
When my daughter was in the hospital, none of the neurologists could understand why she had more vertigo than pain.

There is a very good site about migraine, by Dr. Larry Robbins in Chicago. He allows a free download of his textbook, Headache 2006-2007, which unfortunately doesn’t directly address MAV, but is very helpful in understanding the drugs:
the site is
headachedrugs.com/

He also publishes a column: and Dr. Elizabeth Loder, a headache expert in Boston, who unfortunately doesn’t do clinical work at this time wrote an editorial about how MAV was underdiagnosed due to fragmented healthcare. I found my ENT figured it out immediately, while many neurologists didn’t have a clue:
Here’s Dr. Loder’s editorial
From:"Headache, July 2005:Abstract Section
Dizziness is a common complaint that can be result from abnormalities of the vestibular apparatus of the inner ear and of those portions of the central nervous system (CNS) that process information from the peripheral vestibular system and other senses, particularly vision and somatosensation. Recently, two CNS disorders, migraine and anxiety, have been recognized as being commonly associated with dizziness. These associations may be an expression of an aetiological relationship, for example, dizziness caused by migraine or dizziness by anxiety; alternatively, migraine or anxiety may influence the presentation of a balance disorder. For example, chronic dizziness may become more disabling during the added stress of a migraine headache or panic attack. In addition, dizziness occurs comorbidly with both migraine headache and anxiety disorders. Finally, there is increased comorbidity between anxiety and migraine.
Thus, it is not surprising that some patients with dizziness may suffer from a combination of a balance disorder, migraine, and an anxiety order, a symptom complex that we proposed to name migraine anxiety related dizziness (MARD). The general recognition of MARD may be limited because of the fragmented nature of our healthcare system, where specialists in one field, such as psychiatry or neurology, fail to recognize phenomena known to specialists in other fields, such as otoneurology. This editorial will focus on the pathophysiology and clinical issues relating to MARD, including the interfaces among balance disorders, migraine, and anxiety. We use current epidemiological data and studies of pathogenesis to develop comorbidity models. These models serve as hypotheses that may lead to possible treatment options for many patients with dizziness including those with MARD
Here’s the URL:
headachedrugs.com/column/
Dr. Rauch’s website on the Mass Eye and Ear site has a webvideo explaining migraine associated vertigo.

Bottom line (sorry for the long post) it that it is so common, can last for years, and the lack of information adds to the suffering. The VEDA (vestibular disorders association) has information about it as well–the VEDA are the people who got me to Dr. Rauch.
I’ve gotten slowly better with migraine supplements and some klonopin suppression, my daughter is doing well on nortriptyline (it took some time for both of us to stabilize.)