New - can this really be MAV?

I am so happy to have found this site! I have been in diagnostic limbo-hell for 6 months and my neurologist thinks I may have MAV. We are trying different meds to see if there is a positive response. But it is hard for me to 100% accept that is what my problem is as it is so bizarre. Please let me know if this sounds typical to any of you and if you too experience all of these symptoms:

All of these symptoms are 24/7, since May 16, 2009. There is never a break, ever.
Dis-equilibrium - turns to dizzy the more I move about
Vibrating, jerky vision - 24/7, it is hard to focus on anything small, or far away, or too close.
Sensitive to flourescent lights
Sensitive to busy carpet patterns, can hardly look at them without increasing my dizziness
Tinnitus - a faint dial tone plus a hiss. it is not overly loud, but is always there.
Hyperaccusis
I hear myself swallow and chew loudly
*Oscillopsia with head movement - especially with each step, or when chewing something. This is probably the most distressing symptom. I feel like my eyes are on bouncy springs in my head the way my visual field slips and bounces around.

Any body else have all of these symptoms at once or have had them and were successfully treated with migraine meds? Dealing with all this has of course led to anxiety/depression and acid reflux issues which I never had before. I am at my wits end and ready to try just about anything. So far amytript. has not worked, verapamil looks like it is not going to work.

Can anyone relate to all of this? It is ruining my life and I have a lot of years left to go!

I can relate to almost all your symptoms. I’ve been ill 24/7 for nearly 2 1/2 years and, yes, the illness has definitely ruined my life right now. I had to take disability from a job I love, etc. MAV can definitely be 24/7. read the success thread - people do get better. I wish you all the best. this site is a huge support. it takes time, but you and all of us will eventually discover a helpful medication

I have most of these symptoms too and have suffered 24/7 for going on 3 years now. I have had 80% or better days on nortriptyline and beta blockers in the past but had to discontinue them because of side effects. I am currently trying different meds to find something else that will help me. Stick with the meds & I’m sure you will find relief.

HI

YES to every symptom you have listed except the swallowing and chewing loudly. The bouncing world is awful and I despise the feeling of the floor lifting me up and down. Like yourself and others I have had to deal with these symptoms 24/7 for exactly 2.5 years.

After all the tests my doctor is now steering towards the diagnoses of MAV. I have yet to try any form of medication(soon I hope) so I cannot comment on what might help.

Take care and good luck

Thanks for the replies, I hate that anyone else “understands” first hand but am glad to have found some affirmation that this diagnosis isn’t way out in left field. It was either that or a vestibular injury/vestibulopathy.

Nortript. is next on my trial list, I will cross my fingers it does something. (I have quite the pharmacy building in my cabinet from trialed drugs!) Would you mind if I asked what the side effects are from this drug that bothered you so much? Verapamil has been hard for me to trial due to dry mouth and gastro effects. I’m hoping nortript. does not have the same effects to deal with. But, I think if it makes me feel better I’ll try and find a way to deal with a dry mouth. My heart goes out to all of you!!!

Another question…do you all also have trouble looking down with your eyes (just when you move your eyes, not moving your head down too)? I have trouble getting a decent focus looking down at things - especially if they’re all the way to the floor or Iif am walking while I do it, that just makes my dizziness worse.

Oddly enough I have never had a migraine headache or rotational vertigo. That’s why this diagnosis seemed really odd to me.

Yes Looking down without moving my head is not good. I cannot really explain it but it is something I have always noticed. Its like I cannot find focus,like both eyes blend into oneanother.

hi do you hear other things like when u draw a comb through your hair? Is it only chewing and swalling that is heard abnormally loud (when it comes to the body)?

Hearing the comb go through my hair really bugs me.
Has anyone had their intracranial pressure checkeD?
Sally

I think hearing that kind of stuff is a sign of Superior Semicircular Canal Dehiscence Syndrome. Not sure that could happen with migraine, but wouldn’t be suprised!

en.wikipedia.org/wiki/Superior_canal_dehiscence

I don’t hear other noises but the neuro-oto I saw awhile back suspected SCD and looked for it but could not see any hole on CT.

based on your symptoms I wouldn’t know what it could be except mav then. A special CT is needed to diagnosis/exclude SCD but I assume that’s what your doc looked at… Mind you I for one feel that MAV is too loose a diagnosis and we’ll probably see more exact terminology → know what med to take quicker in the future. Still, you should be able to find a med that helps you, it may or may not take a few tries. Good luck! =]

— Begin quote from “Visionnightmare”

All of these symptoms are 24/7, since May 16, 2009. There is never a break, ever.
Dis-equilibrium - turns to dizzy the more I move about
Vibrating, jerky vision - 24/7, it is hard to focus on anything small, or far away, or too close.
Sensitive to flourescent lights
Sensitive to busy carpet patterns, can hardly look at them without increasing my dizziness
Tinnitus - a faint dial tone plus a hiss. it is not overly loud, but is always there.
Hyperaccusis
I hear myself swallow and chew loudly
*Oscillopsia with head movement - especially with each step, or when chewing something. This is probably the most distressing symptom. I feel like my eyes are on bouncy springs in my head the way my visual field slips and bounces around.!

— End quote

Yes, I get all of these - but my tinnitus is quite severe and preceded the MAV by 8 years.

-Op

I have been dx with Migraine Associated Vertigo but am skeptical. I am currently looking into Chiari Malformation - if you haven’t heard of it, you might find it interesting. Many people who are dx for migraines have this and it is missed due to drs not knowing much about the condition. medhelp.org/forums/Chiari-Ma … n/show/257 this forum has been very helpful for me as I continue to search for the dx of my sypmtoms

Hello! I am new to this Forum as I have been experiencing dizzyness and balance issues since Feb 10. My life has pretty much stopped and have seen more doctors over the last few months then ever in my life. I wanted to reply specifically to this post - about Chiari Malformation. I was diagnosed with a Chiara Malformation Type 1 in 1999. I was experiencing tingling in my hands and feet and numbeness is my head and tinitus. Long story short, I’ve seen several neurosurgeons over the years - who bascially said 'lets watch it and see how it goes" as opposed to operating. Then this last Feb I ended up in the emergency room because I was so dizzy I couldn’t walk straight. Once I told the er dr about the Chiari (who had no idea what it was) - they concentrated on that. So, had a mri - saw Neurosurgeon, saw no changes. He referred me to an Neruologist. The Neruologist didn’t think my issues were Chiari related either, and suggested I see an ENT. ENT has testing done, ENG and other tests - all came back normal. Suggested I see yet another doctor, one who covers Otology and Neurotology (spelling could be wrong) and he now is the first doctor to explaine Migrane Vertigo to me. He prescibed Nortriptylin, and just started taking it yesterday. I certainly hope it helps. As for the Chiari Malformation, I’m not sure which part of the country this post came from, but I have been seeing doctors at Mass General Hosptial in Boston, MA for this for years now, and have been happy with my treatment.

have been dx with Migraine Associated Vertigo but am skeptical. I am currently looking into Chiari Malformation - if you haven’t heard of it, you might find it interesting. Many people who are dx for migraines have this and it is missed due to drs not knowing much about the condition. This forum has been very helpful for me as I continue to search for the dx.
medhelp.org/forums/Chiari-Ma