Folks with MAV; please share info

Just trying to figure this out.

I got diagnosed with Migraine Associated Vertigo (MAV). The treatment program I am on has not helped me (8 weeks into it). So I am sleuthing. Just curious what other people are experiencing.

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they?
(I get like one per year or less--either a visual aura without headache, or a headache with vomiting at the end of it)

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?
(Yes and yes and yes.)

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?
(Well. I guess you know what mine sounds like right now)

4. Do you have ear fullness?
(yup)

5. Do you have disequilibrium?
(mine is at the "floating woman" stage--the earth moves constantly.)

6. Do you get vertigo episodes?
(Not often--and only a couple of seconds worth.)

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?
(yup and yup)

8. What meds are you on?
(velapamil 80 mg)

9. Are you following the migraine trigger avoidance diet?
(yes, what a freaking boring way to eat)

10. Do you think the meds and diet are helping? Have your symptoms gotten better?
(nope, and symptoms have gotten worse. MUCH worse.)

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?
(yes to all.)

12. Do you get motion sickness in "real life", or have you had a history of it?
(I have on two whole occasions in 55 years. It is a rare occurance; once on a deep sea fishing boat and once on a cruise ship--no barfing, either.)

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?
(ooooohhhhhh yeeeeaaaaaah)

14. Do you think your diagnosis is correct?
(I think the jury is still out)

 

Originally diagnosed with MM now looking into MAV as the problem.

1. Had obvious migraines with auras from 35-42 years of age once or twice a month...typically lasting three days. Began with bizarre visual field auras anywhere from squiggly lines to swirling colors. At times there would also be sensory deficits numbness, tingling and other bizarre sensations. Headache would then start typically on the left side either in the temple or behind the eye. Stopped actually having these types of headaches when the vestibular symptoms appeared. Recently started with auras again in the last two months without the headaches.

2. Mild hearing loss low frequency and high, stayed the same in the left ear has gotten worse in the right.

3. Tinnitus varies, all different kinds of sounds no real definable pattern. Has recently approved since I started taking Neurontin.

4. ear fullness in the left side most of the time.

5. Disequilibrium is almost a constant state of being. Few days of actually feeling normal.

6. Had many vertigo episodes in the beginning (3 years ago) they are very infrequent now at least not as violent.

7. Never took prednisone. was on mehylprednisolone made me feel worse.

8. Been on Elavil, Topamax, Acetazolamide...no improvement. Currently trying Neurontin has some good effects some bad. Lots of cognitive issues and i am starting to get very depressed. Seems to help with neck pain, improvement of gait, tinnitus. Added Imitrx today to help with the migraines I have been getting since starting Neurontin.

9. Don't follow the specific diet but don't eat processed food, nitrites, MSG, red wine, chocolate, cheese etc...

10. See 8

11. Light can bother me..got the shades for that. Sound only bothers me at certain times. Can't watch apparent motion, flickering lights, fans, rippling water, strobe lights(feels like a seizure then) etc....

12. No real motion sickness except on spinning rides. Had only one episode of boat sickness but not when I was on the boat...it happened after I got off...the world was rocking for two solid days. Been on lots of boats that was unusual and only happened the one time 20 years ago.

13. Neck pain predominately on left side at base, it is chronic. Once in a while it goes higher up to behind the ear but not normally.

14. Who knows, the jury is out on me too.

 

I was also dx MAV, before they discovered the cholesteatoma in my worse ear. So, I started the medications 4 months before the surgery (to no avail) and started the diet the day of the surgery (since I couldn't have my 12 cups of coffee and my sense of taste was temporarily effected by the surgery). So, my experience was yes, things improved dramatically over the course of the next few weeks. I started adding things back into my diet and tapered off the medications 3 weeks ago. Overall, I still feel a thousand times better than before July 18th. And I have gotten NO aura which looked like fractured vision.





1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they?
(I have only experienced a handfull of headaches in life, but I do get visual aura, and it was several times a day for over a year)

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?
(Yes and not much and no.)

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?
(Well. I had jet engines, disappeared a few days after surgery/beginning the diet)

4. Do you have ear fullness?
(yup, both ears)

5. Do you have disequilibrium?
(mine is at the "floating woman" stage--the earth moves constantly.ditto and I fell alot and staggered, until after surgery/beginning the diet)

6. Do you get vertigo episodes?
(Frequently for first several months, only one since surgery/diet.)

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?
(yup and yup) ditto

8. What meds are you on?
(Inderal and Pamelor, past tense)

9. Are you following the migraine trigger avoidance diet?
(yes, what a freaking boring way to eat)(totally agree, but since my symptoms did abate for several weeks, I have added things back in moderation, I have not added coffee, alcohol or chocolate back in but I don't sweat the hidden ingredients anymore)

10. Do you think the meds and diet are helping? Have your symptoms gotten better?
Not sure, perhaps it helped get a handle on things, because things did get remarkably better, but no worse after stopping the drugs and re-introducing most foods.

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?
(yes to all.) ditto. but just sound now.

12. Do you get motion sickness in "real life", or have you had a history of it?
(I always had motion sickness in vehicles since childhood.)

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?
(My neck is problematic since February; and no it did not and does not)

14. Do you think your diagnosis is correct?
(I don't think it is complete) What I fail to understand, is how my "migraine-associated" symptoms (the big 4 for MM) could be unrelenting for 16 months from a non-headache migraine. So, this is just my personal insider observation: If I do have MAV, then that damn thing that was growing in my ear was the primary "trigger". And I will be re-introducing chocolate soon.

I hope this is of some help. Perhaps those with only a dx of MAV who respond can be more beneficial.

Kathleen

 

1. Never had regular migraines, maybe about one a year with no auras but occasional nausea.

2. No hearing loss at all.

3. Only ringing tinnitus of varying loudness in the affected (left) side.

4. Often get ear fullness also on my left side, it occasionally pops midly, relieving the pressure.

5. Often have dizziness mostly when moving, and only occasionally when sitting. I find it hard to walk straight sometimes, a 'drunk' type of feeling and I veer left a lot.

6. Yes, but only rarely and only lasting seconds at a time. Never had prolonged MM-type vertigo. Also suffer from BPPV which is different vertigo (only happens with certain head movement).

7. Never taken prednisone.

8. Epilim, 500mg morning and night. I tried the others (beta blockers etc) but stopped due to side effects. Epilim helps in that it dampens down my vestibular system.

9. No but feel guilty that I should be! I love sugar and salt but do make an effort to limit these. Also enjoy white wine, a glass per night.

10. The meds definitely seem to be helping.

11. Not that I've noticed

12. Never had any motion sickness (just once on a boat pitching in very high seas which doesn't count!) but did read that MAV sufferers often have a history of this. Never had car sickness.

13. Diagnosed with arthritis in my neck years before the dizziness kicked in. I always suspect it (the dizziness) is caused by neck problems. I often get mild neck pain.

14. Not sure, I have my doubts. I think it's a physical neck problem but don't trust chiropractors at all, or at least, haven't met any suitable ones yet. Did lots of horse riding in my younger years which gave my neck more wear and tear than normal, but I doubt there's any way to reverse that now!

 

I get a few migraines in a 6 mo period. I have had one visual light pattern, a new thing for me is if I hold my head back my left eye will have a white flashing light but goes away when I put my head back down.

I don't have any hearing loss, only low tones in the right ear, but has not changed in 5 years.

I have a mild hissing but its very soft, I do get popping in my right ear when I hear low tones such as a mans voice, sometimes they will both pop out of no where.

I don't have ear fullness

If I'm bad I get off balance, walking makes me worse and my neck muscles get tight and I get dizzy. I can't look up say into the sky, that makes me dizzy.

never had vertigo

no effect with prednisone

the only thing that helps is ativan

When I follow the diet I feel better but not 100%

I have light sound and motion sensitivity motion being the worst, nausea yes but much improved

I never had car sickness, only on rides

My ears don't hurt, but they do get itchy deep down. My neck is where I get a migraine, and I have to watch my neck when working, it doesn't take much abuse anymore.

I think my dx is correct

 

I haven't been dx yet but I have a funny feeling that either I have both MM and MAV or I fall into the group of people who can't be grouped into one or the other. When I was recovering from my first bad attack I had 2 scintillating scotoma about a month apart (I was totally freaked out with the first one because I had never had one before). However, the ENG I had in June showed no function in my left ear and from what I have read migraines don't permantly damage the inner ear.

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they? (Auras- 2 scintillating scotoma, lots of after images and colored lights. Headaches- I get a lot of pain at the back of my head where my head and neck meet. Sometimes I have pain behind my eye(s) )

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse? (still waiting on my hearing tests but sometimes my hearing goes up and down like as if someone was adjusting the volume)

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus? (loud ringing)

4. Do you have ear fullness? (both ears)

5. Do you have disequilibrium? (my balance is off some days I'm good other days are bad)

6. Do you get vertigo episodes? (yes)

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop? (haven't used it)

8. What meds are you on? (none. was on serc for a while)

9. Are you following the migraine trigger avoidance diet? (no)

10. Do you think the meds and diet are helping? Have your symptoms gotten better? (see above)

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea? (yes to all)

12. Do you get motion sickness in "real life", or have you had a history of it? (Never had motion sickness before I had my first bad attack. Now, some days I can have motion sickness from walking)

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed? (neck pain is at back of head, see above. In the last about 10 months I have developed pain behind my ears that feels like it is in the bone behind the ear(s) )

14. Do you think your diagnosis is correct? (no dx yet)

Gwen

 

Here is an excellent article that states that Migraines can cause permament (yet treatable) vestibular damage for those that suffer from MAV.

http://www.drf.org/hearing_health/archive/2004/fall04_migrainemystery.htm

 

Thanx Nassman. I will definitely talk about this to the ENT when I see him.

Gwen

 

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they? Yes, silent migraine symptoms are aura, blurriness in eye, tingling/pain in face/head, increased tinnitus, hyperacusis. I also get 'pain migraines' a few times a year, same symptoms but with pounding pain.

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?
No hearing loss.

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?
I've had bilateral tinnitus all my life, steady very high pitched noise. When I'm having migraine, my left ear tinnitus gets louder.

4. Do you have ear fullness?
I did for a couple of years, but I haven't for about a year.

5. Do you have disequilibrium?
Not sure of your definition of 'disequilibrium'.

6. Do you get vertigo episodes?
Yes.

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?
N/A

8. What meds are you on?
Tried and failed 4 anti-migraine meds, only take Ativan for vertigo.

9. Are you following the migraine trigger avoidance diet?
I did the migraine diet where you eliminate and add foods and track symptoms. Only foods that caused migraines are MSG and caffeine, which I already knew about.

10. Do you think the meds and diet are helping? Have your symptoms gotten better?
My symptoms got better for the first year after I first started getting vertigo, now are steady for two years. VRT helped. My meds are only for vertigo-relief, they don't improve migraines.

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?
Yes, yes, yes. No nausea.

12. Do you get motion sickness in "real life", or have you had a history of it?
Car sickness as a child, even now sometimes, no air or seasickness.

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?

No. No.

14. Do you think your diagnosis is correct?
Yes.

 

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they? yes-no aura but have photophobia/nausea, pain behind eyes.
2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?
Yes,fluctuates,agony at high pitches(little girls squealing undoes me) And the thump thump of the bass in teenagers cars as they go by tilt me right over,can't hear it, but feel it....Is gradually worsening

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?
Have constant "shushing" sound,sometimes ringing esp after painful sound. Have "hearing fadeouts" freq (2-3 day) total loss,then sounds are altered.
4. Do you have ear fullness?
Most of the time -left constantly (shunt side).right not as much

5. Do you have disequilibrium?
Oh yeah..

6. Do you get vertigo episodes?
5-6/day..

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?
predisone seemed to help, but haven't taken any for 4 years....but is why I need cataract surg now..always a price,eh?

8. What meds are you on?
Tried em ALL-now just on allegra and occasional Xanex.

9. Are you following the migraine trigger avoidance diet?
Yup, and I agree with you, it's not fun.

10. Do you think the meds and diet are helping? Have your symptoms gotten better?
They were. It seems to get better then worse. Stress is definite trigger.

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?
Yes, yes, yes and vomiting..unconciousness helps. Feel better after sleep.

12. Do you get motion sickness in "real life", or have you had a history of it?
Didn't before diagnosis of menieres.in 1990.

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?

Yes and yes. left greater than right.

14. Do you think your diagnosis is correct?
Thanks to you, I guess I need to investigate that more.

 

here is something interesting....
http://www.neurology.org/cgi/content/abstract/61/12/1748

 

Mav, to me, is even less understood than mm is from all that I read. It seems though that it is being looked at more.

 

Nassman, thx for the great article. I didn't realize that MAV could cause hearing loss in the lower register. I actually have hyperacusis in the lower register instead. Maybe a 'little' hearing loss will balance it out one day.

 

Yeah. Understatement of the year. If you mention "migraine" everybody thinks you mean a headache, even the medical professionals. I feel like I am on mars. I have to go in and explain everything to the consultants now. Even the acoustic schwannoma. At the moment I know more about all this than my doctors---so fat lot of help THEY are lately.

 

I guess all the off label meds for mav is what gets me nuts. I'm just waiting for my blood pressue to go up so I can try those for mav. My girlfriends is up and she got rid of her migraines once she started. Mine is to low to use those right now. All the others just make me sick

 

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they?
(I'm still trying to determine what standard migraine symptoms are since I've never had them before. All I really know is that I get severe headaches that won't go away. They occur randomly, more often at the beginning of the day)

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?
(Yes and yes and yes.)

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?
(Screeching - like feedback from an audio microphone)

4. Do you have ear fullness?
(Yes - seems to be worse when other symptoms increase. Almost always at it's worst right before each vertigo attack. Stress seems to effect it.)

5. Do you have disequilibrium?
(Yes - progressively getting worse over time and more profound after each vertigo attack. Constant moving like being on a ship)

6. Do you get vertigo episodes?
(Yes - but not very often. I've had 4 severe attacks that put me in bed for a few days each time.)

7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?
(never tried it)

8. What meds are you on?
(triameterene/HCTZ 50/25 MG)

9. Are you following the migraine trigger avoidance diet?
(sort of)

10. Do you think the meds and diet are helping? Have your symptoms gotten better?
(not sure, but symptoms seem to have a mind of their own)

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?
(minor)

12. Do you get motion sickness in "real life", or have you had a history of it?
(None at all)

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?
(YES! YES! VERY MUCH SO)

14. Do you think your diagnosis is correct?
(I haven't been diagnosed with MAV - but was diagnosed with Menieres. It hasn't been until the last year that I've started looking into the MAV possibility)

 

Wow! That sounds very like me. Except mine is worse and starting to make it difficult for me to do much.

I thought I would post this book up here, because it explains everything so much better than any of the doctors have.

http://www.amazon.com/Heal-Your-Headache-Program-Taking/dp/0761125663

 

My diagnosis for MAV has taken nearly seven years to come, but this time I think they have got it right! For the first time in ages the meds I have been taking are working and I haven't had any nasty vertigo attacks for about nine months now. Also I don't feel nearly as dizzy as I used to on a daily basis and life has more or less returned to normal. Yesterday I took my kids to a theme park and I went on so many rides that I haven't been able to in a long time - I said no to the cork-screw roller coaster though - I wasn't temping fate on that thing!! ;D

1. Do you get migraine headaches or other obvious symptoms of migraine? If so, how often and what are they?

The last two attacks I had involved a throbbing headache after three days of spinning - before that I never had a headache with an attack. They used to come every three months.

2. Do you have hearing loss? Does it fluctuate? Is it getting progressively worse?

I have minimal hearing loss and it has not got any worse and does not fluctuate.

3. Do you have tinnitus that sounds like hissing, helicopters and banshees with a furnace moter going over it all? If not, what do you get in the way of tinnitus?

No tinnitus at all.

4. Do you have ear fullness?

Yes - seems to be worse when other symptoms increase and it is always bad right before each vertigo attack. Haven't had a full ear since being on the meds I am on now though.

5. Do you have disequilibrium?

I used to have it all the time - again the meds I am on have stopped it. Occassionally I will get about a 10 second wave of dizziness or feel like I am on a boat in very rough water.

6. Do you get vertigo episodes?

Not anymore, but I used to get really bad vertigo attacks that lasted for three days straight. It was the pits - three days of spinning, vomiting and not able to get out of bed - it was then another three or four days after the vertigo subsided before I came right again.


7. Does your tinnitus and hearing loss improve after taking prednisone? Does it return after you stop?

Never tried it.

8. What meds are you on?

I take sandomigran on a daily basis and have valium and a anti-nausea drug that I take if needed (can't recall the name of it).

9. Are you following the migraine trigger avoidance diet?

Nope.

10. Do you think the meds and diet are helping? Have your symptoms gotten better?

Yes - the meds are working a treat!! My smyptoms have improved 100%.

11. Do your symptoms include sound, light, and motion sensitivity? Do you have nausea?

Yes - even with taking the meds I find that some lighting really makes me feel sick. The only sound that sets me off is the boom, boom, boom of music that comes out of cars with the bass up high and the sound up so loud that you can feel the beat of the music. I also usually have to be the driver of any car I travel in because I get bad car sickness, but yesterday I was a passenger in a SUV on a trip that took two hours and I was fine.

12. Do you get motion sickness in "real life", or have you had a history of it?

I have a history of motion sickness - just ask my poor long suffering parents who loved to travel around the country by car. My ENT said that MAV sufferers were often car sick as children and just never grow out of it like lots of kids do.

13. Does your neck hurt behind your affected ear(s)? Does it feel like your inner ear is inflamed?

Yes, my neck does sometimes hurt - no to the inflamed inner ear.

14. Do you think your diagnosis is correct?

Yes - I think that after being diagnosed with BPPV, Menieres and something else that I can't spell, the doctors and ENT's have finally got it right and have me on the right meds.

Hope this helps!

 

I was recently at Mayo clinic...given my history of headaches, especially the debilitating ones over the past year, I had looked into MAV on my own. I feel like I fit the definition of that just as much as I fit the definition of menieres. The ENT I saw at Mayo told me "you have all four symptoms, therefore you have menieres. Headaches are not a symptom of menieres so I want you to see a neurologist for that". ummm, hello....so what about the possibility of it being something else...like MAV?

So, that was my first visit to Mayo. Recently had my second visit for neurology and balance testing. I brought up MAV with the neurologist. He agrees that I definitely have migraines. He told me that hearing loss is NOT associated with migraines or MAV though. I presented him with 13 pages of information on MAV that stated hearing loss DOES occur for some people. With me sitting there, he looked up some websites...and then told me he had learned something new. So, the neurologist noted in his report that it can be difficult to differentiate between Menieres and MAV...but that given my hearing and tinnitus have actually improved suggest that I could have MAV rather than menieres. Of course he also noted that I could have both.

After I go back to my regular/local ENT tomorrow, I will be starting Neurontin soon. Hopefully I tolerate it better than I did the Topomax...after upping the dosage the second week, I suffered every terrible side effect in the book. They don't want me on verapamil because I already have blood pressure on the lower side...at that to my daily diuretic and low salt diet and I'll be unconscious, lol!

 

Sorry to hijack.

But how is ear fullness related to MAV?? Im not being a smartarse by the way ....im genuinely interested

I always thought fullness and hearing loss etc were signs of hydrops