I'm looking for anyone with MAV to share their experiance. I'm wondering if MAV just ever goes away? Does VRT help? Any insight would be very helpful.

Thanks,
Kat

try taking magnesium supplements and coq10 together for MAV. They have really worked for me, over anything else I have tried.

good luck

I've only been diagnosed with MAV for a few months, but I am finding some slight relief taking Beta Blockers and following a migraine trigger free diet.

Ldumont,

Thanks for your reply. I also am trying diet control. Can I ask what kind of beta blocker you are on and dosage? How long did it take to get some relief? I also tried taking one and not sure that I gave it time to work. I was freaked out by the side effects.

Thanks,

Kat

PART I

Hello,

I have been informally diagnosed with MAV, and continue to deal with symptoms (going on 12 years).

I am including two excerts here from older posts on MAV that I wrote, that you may find helpful:

From 2003:

"What is it?
Migraine is a problem where blood vessels in the head contract and relax abnormally. Depending on which blood vessels are acting up during a migraine event, different symptoms can occur. Headache is the most common migraine symptom, nausea and sensitivity to light are probably next on the list, followed by balance symptoms and visual aura.

Migraine Associated Vertigo is caused by poor blood circulation in the arteries in the head or to the blood supply that leads to the inner ears. It could be one or the other, or both areas involved that could cause balance symptoms.

This is the THIRD most common cause of vertiginous (having a sensation of whirling or falling: dizzy, giddy, lightheaded, reeling, woozy) symptoms.

Can this restriction/poor blood flow cause permanent damage in any way?
Migraine patients are at slightly greater risk for stroke. There is some research data indicating that migraine can cause ear and eye damage.

What causes it?
Sometimes a root cause is hard to determine. There is definitely a genetic component involved in migraine (for me, I have blood-relatives who also have some type of history involving vertigo). And migraine symptoms can be triggered by many things, including trauma, hormone levels, foods and barometric pressure changes. But causes are different for different people, and it’s more common to treat the condition than look for the real cause. An FYI that you may never know the reason you have them, or the reason why your symptoms get worse or feel better.

What are the symptoms?
From a balance perspective: Balance symptoms vary, and a person with Migraine Associated Vertigo will usually end up having a myriad of unexplained balance/vertiginous sensations/symptoms which tend to multiply the longer you have this condition. Symptoms fluctuate in sensations and severity. Sometimes you may have them very severely and they will come on all of a sudden, and sometimes you may carry them on some level throughout your days and nights and can feel them starting to worsen or alleviate.

Symptoms can also include feelings of rocking/swaying, spinning, elevator feeling, and unsteady gait, to name a few. Usually some type of headache is present with symptoms, but not always. Symptoms can come and go, sometimes going away for months at a time. And, you may not have all symptoms, or you may have more than your share – it can vary.

The primary symptom for women is an increase of symptoms during or around menstruation.

Migraine Associated Vertigo can also cause or trigger some inner ear conditions such as (for example) Benign Positional Vertigo (BPV, BPPV), so a person can have BVP on top of Migraine Associated Vertigo. How’s that for a double whammy?!

This also can lead to panic attacks and feelings of anxiety, which most people may experience due to their balance problem.


(continued)

Part II (continued)

How is a diagnosis formed?
The “usual” tests for dizziness (ENG) are given and other dizzy-causing conditions are looked for (sometimes through MRI or blood work, to name a few). Sometimes the Rotary Chair test is given, especially if other tests came back “normal” (I did not have this one test). Other “dizzy” conditions are ruled out - for example, diagnosing Benign Positional Vertigo is ‘easy’ due to the way the eyes move upon examination, an ENG will determine if the cause is (for example) labyrinthitis, an auto-immune illness of the inner ear usually results in rapidly progressive hearing loss (this was a specific question I had, as I was exposed to a virus infection in the late 1980’s), and so on.

If all tests come back stating “normal” then other factors are taken into consideration to make the diagnosis of Migraine Associated Vertigo: #1 a positive reaction to one of the medications used to combat Migraine Associated Vertigo (in my case, my symptoms completely disappeared within three days on the medication), and #2 a look at the symptoms (headache with balance symptoms), as well as for me the fact that my symptoms were so much worse the week before and during my cycle. I have all the CLASSIC symptoms of Migraine Associated Vertigo.

Who can make the diagnosis?
My diagnosis was made by a Neuro-opthalmologist and my second opinion was confirmed by a Neurologist. That’s not to say that another specialist cannot make this diagnosis. It’s always good to start with your primary care physician. I learned that if an ENT suspects a migraine-related condition, they will usually recommend a neurologist because that type of specialist deals with migraine conditions. Migraine Associated Vertigo for some specialists is little known, so a diagnosis may not be given consideration initially.

Can Migraine Associated Vertigo be cured?
No. Migraine is often ‘outgrown’, particularly with menopause. This is not universal though - in a few women migraine gets worse after menopause. There is no cure, but the symptoms can often be effectively controlled with migraine preventatives.


What are the medications used to treat Migraine Associated Vertigo?
These 2 articles cover much (but not all) of the medications used in migraine. The first talks about the problems of using analgesics (like aspirin and many others) too frequently in migraine. The second is an in-depth discussion of several preventative medications, including Amitriptyline.
http://www.aafp.org/afp/971115ap/moore.html http://www.aafp.org/afp/971200ap/noble.html

A few more preventative meds have come out since the articles were published. Your primary care doctor may want to work with a local neurologist to find the right preventative for you. My own personal opinion on medication would be to try something in a low dose first, and definitely refrain from the “higher power” medications initially like Imitrex, which is also used to treat migraine, but is well known for some awful side effects.

How do these medications work?
The “usual” medications used to treat migraine conditions work as spasm alleviators to stabilize the spasms of the blood vessels.

However, there are some other medications that are used to treat migraine conditions (like the Amitriptyline) that are more commonly used a pain alleviators – however the Ami (for example) has different components than a “usual” migraine medication, and the effect on the brain is on the neurotransmitters. It is not known why a medication like Ami works so well on this type of migraine condition. Another medication (for example) very similar to the Ami is Nortriptyline. However, since the properties of the Nori are slightly different than the Ami, if a person gets great results on the AMi and then they try the Nori, they may get NO alleviation from their symptoms on the Nori. Because every one is different, a person may need to try a few different medications before finding one that alleviates the symptoms with tolerable or no side effects.

(continued)

Part III (continued)

How do I know all about this?
I didn’t. If you read my posts on here starting with the Archives, you will see that I have had these symptoms for a VERY long time.

Years ago when my symptoms were almost intolerable, I went to a gamut of specialists. There were two specialists out of the group that suggested I was experiencing Migraine Associated Vertigo. I really didn’t know what it meant, as no-one took the time to completely explain it to me. I thought “migraine” only meant those truly bad headaches where you had to lie in a dark room and vomit until it passed. So, I blew it off as another misdiagnosis and continued my search. Back then, I was very emotional over my symptoms and fuzzy-headed, so I can only think that these were also some of the reasons why I didn’t pursue learning more about this condition.

Along the way, I did make additional calls to other medical fields – like Physical Therapy. Two of the physical therapists that I spoke to out of state who dealt with vestibular conditions also told me that I "probably had a little known condition called Migraine Associated Vertigo".

So, I started making some calls to states nearby to locate a Balance Center that I would be able to drive to.

I found a Balance Center in Indiana, and placed a call to see if I could speak to someone there about treatment. The people there were very sweet, and instead of speaking to a receptionist (which I anticipated, or at the very most, the Office Manager), I was put in touch with the Director of the entire facility. This gentleman took the time to listen to everything I wanted to say, including my idea for going to a Balance Center. He was very patient, and waited until I took a breath, and then told me that he hears about my symptoms all the time. He then went onto state that I didn’t need to pursue a Balance Center, because it was pretty apparent to him that I probably had Migraine Associated Vertigo.

I asked him a zillion questions, like (most importantly) how did he know that? He explained about how certain inner ear conditions are diagnosed (some of which I didn’t know); but now I know why I didn’t have some of the “inner ear conditions” that I thought I might have. We went over my history of testing and the specialists that I saw.

He was kind enough to send me some links via e-mail about this condition, as well as some other links pertaining to additional questions I had. In addition, one day I sent him an e-mail asking him if I could pick his brain with more questions, and we spent one full day e-mailing back and forth. I received more information from him in one day, remotely, than I did in speaking to a specialist in his office. What a blessing to have been put in touch with him.

I followed this up with a call to my neurologist, who knows me well. He told me that he was in agreement with the initial diagnosis of Migraine Associated Vertigo that I had received so long ago.

I also followed this up with a call to an Apothecary (they are a type of pharmacy that deals with providing special combinations of medications to people) – I wanted to talk to someone more in depth about migraine medications.

An aside about my medication experience: I got great results with the Ami that I mentioned – within three days my symptoms (wooziness and headache) were completely gone. But after a while, I developed side-ffects of a racing heart beat and difficulty swallowing. I had the racing heart beat checked out by my cardiologist, who told me this a usual side-effect and that it wouldn’t harm my heart. The swallowing issue was caused by this medication as well; I didn't realize it but this med is also used to "sedate" or delay the esophageal muscle But, I went off of it due to fright, and soon my symptoms came back. I am pretty nervous about taking medications, so I stayed away from thinking about that until recently.

At the suggestion of my neuro, my doctor, and the Apothecary, I will probably be trying the Ami again since I received great results, only at a lower dose or an every-other day dose to see how tolerable the side-effects are that way.

(continued)

Part IV (continued)

One last popular question: Can I fly with Migraine Associated Vertigo?
Yes, but the symptoms may be heightened for a while until things settle. I did fly out to Las Vegas in 2004, and the flight (for me) was VERY unsettling, as my dizziness symptoms increased. But once I got off the plane (both times), I was left feeling slightly "tipsy", but nothing that I couldn't handle.

My answers on here were based on the information I gained from my discussions and reading about Migraine Associated Vertigo, and my own experience with my symptoms."

From 2005:

"Been talking and e-mailing with the director of one of the balance centers, and he provided me some additional information on MAV, which, although was short in description, really hit home for me.

He said to think of "migraine" as not so much "headache" but rather "poor flow flood". This is why some people get confused when they hear the term MAV, because they immediately think of having headaches, rather than the other symptoms.

MAV is a condition where there is a spasming of arteries, which reduces blood flow, which causes symptoms. Yes, these symptoms CAN be headaches, but these symptoms can also be the myriad of bizarre sensations and imbalance that so many deal with.

Because the arteries that spasm change (meaning different arteries can go into spasm at different times), symptoms can vary, which is why (for example) some people may experience feelings of leaning to one side, and then have that change into feeling another form of imbalance OR disappear. Symptoms can fluctuate depending on what artery is spasming. Symptoms can disappear if there is no spasming.

Spasming can be triggered by things like food allergies, diets, stress and tension, environment (weather), and hormones, to name a few. Most people who have MAV probably have had it longer than their head symptoms started, and sometimes can be triggered by other disequlibrium issues.

Most MAV symptoms can be controlled by medications AND since other disequlibrium conditions usually arise with this, should always be treated with a course of Physical Rehab.

Why Physical rehab? People with MAV are usually overly sensitive to forms of motion, which leads to over-compensation of this sense. Many people with MAV may tend to have some "spinning" episodes AND deal with the same types of vertiginous issues that people with true inner ear disorders experience - physical therapy helps to get this over-sensitivity back under control."

Kat, what questions do you have specifically? xo

Wowwwweeee,
That was a great post with great info!!! I have not been formally dx w/ MAV, but strongly suspect due to my symptoms and what a few Drs have mentioned. My question to you is...what age did this start for you?
I am 34. I have had this imbalance/rocking/nausea thing for 19 months. Been to a myriad of specialists. Had MRI of the brain twice. Mine came back with white spots which were suspected of previous migraine headaches. Back in my late teens, early twenties I got migraine headaches...some with aura, some w/out. Head crushing pain. for the past 10 years or so, I only get them maybe once a year. My symptoms I have now with the dizziness,swaying thing is almost all the time, with days of more severe and others I don't really notice it. But I never really have headaches with it. I notice sometimes it's more severe around mentrual cycle, but not always. I feel like crap for a few days after I fly. I cannot go into grocery stores, etc without feeling weird. Driving is actually okay for me. I excercise too.
I have anxiety over MS since they had to test me for that due to the spots ont the MRI, but they are not in the right place. 2 neuros said probably not MS. A neurotolgist said possibly MAV. My ENG came back normal. Never did a rotary chair. I am wondering if past migraine headaches manifests into this awful balance thing!

:) OMG, I am so not worthy! That information posted above was amazing, Wowwwweeee! Nice to meet you!

Reading your post and others like it sure make me feel like I am less alone in this battle.

Wowwwweeee,

Thank you, thank you!!! You gave me so much info. It really helps to have info from someone who has been there. I'm so grateful. This has been such an awful experiance for me and others.

Here go some ??? How would you know if you developed another condition in addition to MAV? Does your MAV have to be under control to do some kind of PT? When you are really struggling with imbalance should you push on or rest? Have you heard of anyone feeling like they are falling side to side when they walk? What is it that makes it hard to be in certain places, like the grocery or big rooms? Can an anxiety med knock out MAV? Have you had years (in your 12 of dealing with this) that you have been fine? Do you explain your "condition" to other people when you are having problems? Did you have "dry eyes".

I'm sorry for all the ?'s. There are days that I can hardly get out of bed. I'm trying to find acceptance and make a new normal for myself, while enjoying the things I can when I'm feeling up to it. I hope that makes sense. I wasted to much energy being upset about it....its time to move on and make the best of it I can while being realistic.

Again thanks! You made my day.

Kat

Hi Rachel,

My symptoms started around age 29 (I am now 42). If you do a search on my old user name (Wowwweee), you can read a (very long) post about my symptoms, when it started, etc.

I used to work in the medical/physical rehab arena, so I also thought that I had MS, as some of my symptoms are not only inner ear related, but seem neurological in nature. I still have follow-up check-ups with my primary MD and neurologist. Sadly, my sister-in-law was recently diagnosed with MS – and her only symptoms at the time were occasional wooziness/dizziness, and some neurological issues with numbness/feeling like she was walking funny/pins-n-needles in her arms and legs. I also have been told that I do not have MS, however, I still consult with my neuro when my symptoms are really bothersome. You can definitely tell if you have MS by a spinal tap, however, if your neuro is comfortable that you do not have MS – I would try your best to relax about it and stop second-guessing that ruling out. It will only increase your stress, and increased stress (at least for me) = heightened symptoms.

I honestly cannot tell if my symptoms have settled over the years, I am compensating, or I am getting used to them, as I still have them on some level every day, but I am able to “function” better and be not so emotionally limited with the symptoms.

Currently, I am dealing with some inner ear congestion (according to my doctor), and my symptoms have not only increased, but have changed, so that I feel like I am tipping to the left but my body is being pulled to the right. Very scary.

Remember, with MAV, you can have the vertigo (wooziness, etc.) WITHOUT the headache. So many people hear the word “migraine” and automatically think “headache”.

Yes, spacially, I have a very difficult time – so things like stores, malls, movie theaters, and even the shower can be challenging and anxiety provoking for me. Some days I even have to change the way I do something (like shave my legs in the sink), so I don’t have to bend or look down in the shower.

Driving (especially at night) is very difficult – obviously, moreso on the days I am worse with symptoms, than others.

Yes, MAV can actually provoke or trigger other inner ear/imbalance issues, AND vice versa.

I’m sorry you are dealing with this awful concern. I was supposed to start a new job this week, but my symptoms are so increased (probably due to the inner ear congestion), that I am home. Blagh.

xo

Hi Ldumont,

When you are dealing with symptoms for as long as I have been, you have A LOT to say, think about, and post! You ARE worthy, and definitely not alone in this battle.

Do you also have MAV?

xo

Hi Kat,

I have read some of your other posts, and know that you are feeling depressed and anxious over this – as so many do and are. I also continue to deal on occasion with depression and anxiety, purely from the standpoint of having to deal with something not only baffling, but scary and limiting.

How would you know if you developed another condition in addition to MAV?
For me, after having symptoms for so long, if they change or increase, then I will usually make an appointment to see my doctor or neuro. To this day, I still experience heightened or “new/strange” symptoms that can physically and emotionally upset me. I have learned that sometimes certain symptoms are “just what they are”, meaning they have to run it’s course, and some symptoms I feel more comfortable getting checked out to ensure that it’s not something else.

I was told that MAV can produce a myriad of odd symptoms, sometimes they seem neurological, and sometimes they seem inner ear related. With time, I know when I feel that I should call my doctor, or when I should just ride it out.

Does your MAV have to be under control to do some kind of PT?
I think PT is good any time (my opinion only). I opted to let nature take it’s course, and have not done any PT to help with compensation. I’m just too nervous and worry about anything provoking my symptoms. My advice is that it never hurts to try, but I don’t take my own advice because sometimes (simply put) I am not that brave.

When you are really struggling with imbalance should you push on or rest?
For me, if I am spinny-dizzy, I stay right where I am until I can up without me or the room spinning. However, if I am woozy, with other symptoms (like feeling that I am going to tip over, lean to one side, pass out, etc.), I will make myself get up and do something close to home – so I will garden (pulling weeds is very therapeutic) or vaccum (for examples). Both things can make me feel woozier (all that bending and looking down), but sometimes emotionally pushing myself to do something physically gets me moving and more able to be more physical.

Of course, there are days when I simply need to sit quietly because my head is so “off”.

Have you heard of anyone feeling like they are falling side to side when they walk?
OMG, this is my MAIN symptom. It’s especially bad in stores, long walks, and after exercising. Try putting some cotton in your ears and see if that helps you feel more balanced. On my very bad days, I do this, with some good results. It does get very tiring feeling as if I am always being pulled or compelled to sit or walk to one side. Try explaining that symptom to someone! Ha.

What is it that makes it hard to be in certain places, like the grocery or big rooms?
I do not have a medical reason for that, as I am not a medical person, but for me, I think it’s all about the way my brain now perceives incoming data and my surroundings – so certain layouts, spaces, colors, and floor textures mix me up, causing over stimulation. Also, I think anxiety plays a part, as I am more “at peace” in surroundings that are familiar and “less tedious” to encounter.

It’s hard fighting head symptoms all the time, and I believe that I feel that I am fighting harder when in different surroundings, making not only my brain work harder, but my anxiety. I also feel that when I become more anxious, that probably incites more arterial spasming, causing heightened symptoms.

Can an anxiety med knock out MAV?
No. There is no cure for MAV – it is what it is. My opinion only, but among other results, the majority of anxiety meds mask the anxiety part, so you are able to better cope with your head symptoms, even when you still have them. Of course, MAV can be triggered by anxiety, so if you are dealing with high anxiety and go on something to help you with that, your MAV symptoms may lessened simply because the anxiety lessens.

I did seek out counseling to deal with my head symptoms, as they were causing me much distress. My counselor at the time said that although these types of meds have their important place in getting healthy, they do not teach a person to cope with their issues. I opted to not go on any meds because I wanted to learn coping mechanisms to deal with this condition without depending on anything pharmacological.

I did trial one anti-anxiety med, which did help alleviate my symptoms, and the underlying constant anxieties I carried with me. But I stopped it due to side-effects,

Have you had years (in your 12 of dealing with this) that you have been fine?
I have had about two symptom-free years spanning a few years in between. My symptoms though, are usually with me on some level, though on many days I am able to still do what I want with minimal issues. The past few months have been poor however, as my symptoms have been very bothersome and limiting.

Do you explain your "condition" to other people when you are having problems?
My close friends and family members know the whole story. Usually, I will simply tell people that I deal with “dizzy spells”, so sometimes I don’t do a lot when my head is feeling poorly.

It was a life change for me, and for my friends, who were used to me being fearless and the life of the party. But love me, love all of me – and that includes accepting me as I am NOW. Wooziness and all.

Did you have "dry eyes"?
No, but that doesn’t mean that your symptom of dry eye is abnormal. I have had symptoms that no-one else on this board seemed to have, and vice versa. Plus, your dry eyes may not even be related to your current situation.

I hear you on you last paragraph. Counseling helped me learn ways to accept and cope with the changes and limitations – it was a very challenging time for me. I continue to struggle, but I also continue to have good days now as well.

Post anytime. xo

Thanks Wowwweee!.. I will look at your old posts.
I know I should get the MS out of my head, but it's hard to do that. Glad someone else can relate. Both neuro's said they didn't think I needed to do the spinal tap, just get follow up MRI's. I even went to a MS specialist. He says he thinks it's possibly MAV, some sort of vestibuopathy. He said he cannot say in writing that it's not MS, but stongly beleives it's not since my symptoms are not classical, nor does the MRI show it.
One last thing, what are your other neurological problems? Do you have any visual problems or anything muscular? I sometimes get RLS and I get a lot of muscle tension. My one nuero said it's anxiety. Anything weird that happens to me, I assume it's b/c I possibly have MS and I don't believe the Drs! I know...it's a bad way to be...

Hi Rachel,

I can honestly tell you from my personal experience that thinking you are sicker than you are (i.e., thinking you have MS despite your doctors' opinion that you do not) can be a BIG stumbling block to coping with your current head symptoms. If you still are truly worried that MS is a real possibility, tell your primary doctor that you want to completely rule it out and have that spinal tap - then that is one thing that you can positively put behind you. For me at least, worrying plays a large part in how I cope, feel, and think about what is going on with me emotionally/mentally. One of the top five things that helped me immensely in all of this has been (finally) learning how to put trust in my doctor. Granted, some of my symptoms are so bizarre (to me) that I find it impossible at times that I don't have something equally "wrong" with me; I do think it's a normal reaction to have worry thoughts about your physical health, especially if no-one can pin-point an absolute diagnosis or reason for symptoms, but on the other hand, it doesn't pay to worry, worry all the time, or else it is difficult to try to learn how to cope and live with what you do need to. I spent a good portion of time simply worrying about all the horrible things that I could have and along with that, all the "what if" questions that came with those worry thoughts. Over the years, I do still have those concerns, but not to the degree I used to. I am sure that things can be missed or overlooked - so even being told that I do not have MS can make me wonder at times if perhaps it just hasn't been "caught" yet. Also having a good rapport with my doctor(s) also helps that along, and I need to have my questions answered when I have them, and I need reassurance when I am edgy.

My symptoms can vary, however for the first few years visually, especially in the very beginning, I was not able to eye-track anything up close - either looking at something or reading. Again, I can go into all my symptoms, but since you have my old user name, if you go back to my early early posts, you will see all the bizarre sensations and symptoms listed. Sometimes it's a lot to re-type, since that was a very difficult time for me.

Currently I am dealing with double viral inner ear infections, meaning congestion in both ears caused by a cold or allergies. It's been playing havocwith my head symptoms to include that looking out of a spacy fishbowl feeling, a sensation of me or things slowly oozing when I or they are not moving, Frankenstein or "stiff" walking, and me walking REALLY to the right all the time. I rarely can walk in a straight line - I usually always slope to the right, but this week has been nuts with that.

I did go to the doctor twice this week: On Tuesday I was told I had congestion in my left ear, but yesterday I was told that now both ears are affected. Since it's viral, there's no antibiotics to prescribe, and I am waiting it out. It stinks and is very anxiety provoking. Blagh.

Go get that spinal tap if you can't trust your doctor that you don't have MS. Peace of mind is very important when coping with something so unsettling.

xo

Wowwweee,

Thank you for all your information. This has been so hard for me. Today has been a terrible day and I spent most of it in bed. When I feel so bad I think can this really just be MAV? I guess it can. Like I said all the info helps me to plan for my new "normal".

I did have another couple questions. Is there compensation with MAV? Also did you have muscle shakiness? I know the falling side to side thing is so weird and sucks. I will say I did feel relieved when you said you had it too. I also do the stiff walk and can't walk a straight line to save my life. Do you think when we hit menapause this will just disappear?

I'm sorry you aren't feeling well. I can't imagine dealing with it as long as you have and still having things set it off. Things for talking to me. It really has helped clear my head. I'm hoping for a great day tomarrow and hope you have the same!

Kat

Hi Kat,

I'm sorry some of your worst days are spent in bed. I have had many, many days like that also. My advice to you, is 'move your muscles' in some way, even if you do need to lie down or remain immobile much of the time until the worst passes. You can do leg-lifts in bed, or do hand-squeezes, etc. It's important to get your body used to being in motion, and to keep in motion. I have found that exercise helps me in moderation - too much of any type of movement (for me) sets me "off" though.

You ask "can this be MAV"?
MAV mimics other inner ear and neurological symptoms. If you have been given a clean bill of health by your doctor and any other specialists that you have seen, and you are being provided with the diagnosis of MAV, then you may want to consider that this is what you are dealing with. I realize that it's hard to accept a diagnosis of something that "may or may not be", especially when there is no "hard" facts to back that up. Remember that MAV is a ruling out condition, meaning that other causes are looked into also and first. MAV is a horrid thing to have to deal with just from the symptoms alone, but there are so many other worse things to have.

Is there compensation with MAV?
I think that people can adapt and compensation to almost anything. My opinion only, but I believe that once you get "used" to the changes and symptoms that come from dealing with a condition, and, you don't let the condition scare you as much, even with limitations, dealing, compensating, and adapting can and does happen. Like anything else, it takes time, trust, perseverence, and attitude.

And remember, you will have set backs too - meaning bad days, worse days, and depressed days. That's also a natural part of dealing with any condition that is limiting or changing (impacting) in ANY way.

Did I have muscle shakiness?
Yes, and I still do. I attribute this to partly not feeling like myself when I am very symptomatic. I mean, when my balance system feels "off", EVERYTHING feels wrong, so my body does not know how to react to feeling and walking so strangely. I also attribute part of that to anxiety, as when I become very symptomatic, parts of me stiffen up and get nervous. I think it's my body and mind's reaction to how I am physically and emotionally coping. It's not the same shakiness I get in my stomach when I know I have to go to the dentist - it's more like my core or all my muscles shake instead.

I have been told and have read that menopause can bring relief. I can understand why this happens from the hormonal side of things. However, I also think about that the older people get, the more their vestibular system can fail them, even without initial inner ear issues - so I worry on occasion about how I will be as I age.

And we thought it was supposed to get easier as we get older! HA.

Well wishes for a nice day. xo

Wowwweee,

Hi, today is a better day and hopfully also for you. I put a call in to a PT person to see if I could get some excercises for balance. I am really looking forward to seeing if there is something else I could be doing. If for no other reason to just be "doing something".

I do believe that I have MAV and I trust my doc. It's just when I'm in the thick of it, I can't believe how debilitating it is. I am so thankful that I don't have to work, because there is just no way I could. I can't imagine having to go to work daily. How do you do it?

Again, I can't tell you how grateful I am that you posted. It really has helped me clear my mind and start my new normal. I'm sorry you suffer from this, but so glad that you shared because it will help so many people.

Have a steady fantastic day!!

Kat

Some post you put in here Woowwweee(I'm sure I misspelled it;))

For those dealing with MAV, and already diagnosed, and for those who suspect that they might be dealing with it(like me), this was a great input, thanks a bunch..

Jumping into this information bandwagon, I'd like to ask you something about MAV...

Since I've been dealing with my symptoms for... 20 months since my initial vertigo attack, with a year almost completely symptom free(2005), and this last 8 months with a bunch of new symptoms, with only five days dizzy free all this year, I started to think about MAV as a possibility..

This because I did remember to feel some of my present symtoms before that 04 attack, not the spinning, unbalance, or this "shaky" vision(where things move from side to side), but the fogginess, the "off" mind feeling, and some light "strobe" like vision(with some light sensitivity), that are not new to me, and sometimes I can associate them clearly with an increase of my dizzy symptoms.

I was diagnosed with a right ear vestibular dysfunction, wich came out from a VNG caloric test I took this year, but it seemed that my brain was already compensating well for it, so they label my problem as an "old dizziness", practically ruling out a new vestibular episode. They also checked me for ear pressure, and audiometry, with no hearing loss present, so they ruled out MS too.

I was given "generic" VRT, wich I believe really helps me somehow, not in a huge way tough, but being almost two years from what seems to be my initial attack, I'm still with most of my "new"(this year's) symptoms alive and kicking...

Strangely enough(at least for me), on that glorious 5 days vertigo free, I didn't change anything on my routine, or at least nothing I'd noticed, and this "vertigo on/vertigo off" feeling is always present, where in my "off" state I'm practically normal, and able to endure some tough VRT and motion, and in my "on" state I'm amost disabled, and back to square one..

So..

Having a Migraine Hstory, specially in my teens, but without a real "cassic" migraine attack in years, does this all rings any bell in you?, In your experience, do you feel like it could be MAV?

I have to say that I'm also dealing with an increased general allergy symptoms, with ear congestion and all, wich gives me hell right now, but on the other hand this isn't all that new to me either, and dealing with it also on those 5 vertigo free days, and in almost all of my 2005 practically vertigo free year, well I suspect there might be some other reason for my failure to compensate in full.. MAV maybe?

What do you think?

Hi Stargrave,

Interesting post. I also deal with having literally, virtually woozy-free days, where I even can lie flat on my back or on my side without provoking symptoms. But then, sometimes with no real trigger, my symptoms are back.

Things like inner ear congestion from colds and allergies can trigger heightened symptoms, and can cause me to be spinny-dizzy. My last recent episode of VERY heightened symptoms came about from double viral inner ear infections due to ear congestion.

But like today, I was feeling pretty good, and then went home for lunch. By the time I got done eating and was getting ready to go back to work, I felt slightly spinny-dizzy. Not sure WHAT that trigger was, except that I am dealing with some personal stress, and those thoughts during my lunch hour may have caused me some anxiety, which in turn provokes my symptoms as it pertains to MAV.

My viewpoint only here: As for compensation and MAV, I am not sure how that works, as MAV can be triggered by an inner ear problem, but it's also inherent, meaning that usually a person who has MAV probably has either been prone to it histronically or genetically, and something can trigger it to produce symptoms. Since a person can have MAV and an inner ear problem (and vice versa) at the same time, even if you compensate for the inner ear problem, you may still have the MAV symptoms. Does that make sense? To a degree, I guess with medication and/or relaxation/cognitive/behavioral therapy, one can control the arterial spasming that is caused by MAV, but there is no real cure. So, when one feels they are compensating from MAV alone, it may be because they have learned to deal and cope with the symptoms, deal and cope with the triggers (life) that heighten MAV symptoms, or their symptoms may wax and wane, as so many MAV symptoms can. Usually, unfortunately, I have mine pretty much on some level every day.

So, a person with MAV may not compensate the expected way a person with only an inner ear disorder will.

I also feel that the majority of inner ear and MAV symptoms mimic each other, and although there are differences, sometimes it's difficult to determine what is really going on with someone's symptoms. I think for many, doctors find it easier to summarize or categorize a person's symptoms simply for the sake of a "diagnosis" or place to start treatment, even if they are not exactly sure what the root cause of the head symptoms are.

I hope you have a good day, and wishing you many more symptom free days ahead. xo

Interesting post. I also deal with having literally, virtually woozy-free days, where I even can lie flat on my back or on my side without provoking symptoms. But then, sometimes with no real trigger, my symptoms are back

Exactly, and this stands true for the wooxy free days, sometimes they just come along just out of the blue... I can't recall if it was hbep or scott, but someone suggested me that this could be the difference between a day with migraine(or MAV) and a day without it.(the symptoms I mean).

Taking this in account, with my prior migraine history, and the 20 month period of my dizziness, with the last 8 months feeling worse, or with "new" horrible symptoms, make me believe that there could be some MAV condition here with me.

Unfortunately(sort of speak), when I went to the neuorotologyst I was having this ear congestion(viral or allergic, I don't know), wich of course gave me hell, and when treated I did improve from that dizzy crisis, and I'm sure this could be a permanent decompensating factor.. BUT, since I've had this allergic symptoms and ear congestion practically all my life, including 2005 the almost completely dizzy free year, after my initial vertigo attack, well I kind of blame MAV for that.

Now I'm treating as hard as I can to get my allergies stable, at least to the point where, if I'm still dizzy, as I'm afraid I might still be, my Neurotologyst might give it a shot for MAV, because I'd rather not begin to take any MAV treatment on my own, or if MAV is not my real issue, to find out anything else that could be giving me this trouble.

Thanks again Wowwwweeee, your post really gave me a lot of insight.

HAva a great dizzy free day, week, year and life ;)

Think I might take the mav root too

Although I am better , I'm not fully better and generally always feel 'hungover' or headcachy and spacey and groggy with a few visual problems.

Got an appt with neuro otologist soon, so might just take some meds anyway.Got nothing to lose.

I am just seeing a worrying trend on these boards that if you have this junk for more than 2 years, it seems to turn into a life long on/off struggle with symptoms, which Im really not up for!!

Anyone recovered lately...nope.

Best of luck!

Hi Star,

Some of the reading that I've been doing on migraine (in general) suggest one way to combat (NOT cure) is to take something as soon as you feel symptoms. I have been doing that, not so much from reading about trying that, but rather, I can most times "feel" my symptoms start to increase at times, so I try to prevent them from worsening - "nip it in the bud", so to speak. So with that said, here's something you might want to try (with your doctor's permission of course):

What works REALLY well for me is taking two plain 500 mg aspirin with one teaspoon of Children's Liquid Benedryl (Cherry flavor, ha ha). The aspirin combats the headache part, which I usually have on some level daily, and the Benedryl not only works as an inner ear "sedator", but it works on the central nervous system in a way that most antihistamine's do not, which also has a positive effect on my head symptoms.

Also, although a decongestant is best for inner ear congestion (whether it's cold or allergy related), they also have a side-effect for many people of provoking a racing or rapid heart rate. Since my pulse is high to begin with, I opt not to take a decongestant. But the Benedryl works very well for me. I have been doing this for a number of years (I just tried in one day and it worked). My doctor would rather not see me on so much aspirin, but it's the only thing that I have tried that kills my headaches.

If your doctor is agreeable to you trying this, please let me know how it goes for you. Usually within an hour or so of taking this combination, my symptoms are alleviated to the point where I can actually think of something else besides them!

I also trialed a medication a while back called Amitriptyline, that is an older anti-depressant, but has had good results for treating MAV symptoms. I took just half a pill at dinner time, and within three days my symptoms COMPLETELY disappeared (a strong indicator that I have MAV). However, for me, I developed two side-effects: a racing heart rate which was annoying but not uncomfortable, and the inability to sometimes routinely swallow solid food - now THAT was scary! This med also is used to "relax" the esophageal muscle, which is why I was not able to use my swallowing mechanism too well. It was a awful feeling, and I got off this medication for that reason. There is another "cousin" med called Nortripytline, but there is no way I am trying that after the last experience. I can be a nervous nellie sometimes about taking new meds.

Also, de-stress where you can. That's hard to do, I know. But I get massages on my neck, which is usually always tight, which tightness can provoke head symptoms; I try to get good rest or sleep; I stay hydrated; and even when it's hard to exercise (be mobile), I try to move my muscles.

I hope you find some relief with some of my suggestions. xo

Hi DizzyRascal,

I have had my head symptoms for about 12 years now. It's so nice to know that some people find a "cure" - I feel that I am going to have my symptoms forever, and I am trying to accept that, but some days are difficult.

As per my recent post to Star, maybe you would also like to try to aspirin/Benedryl route (as long as your doctor says it's okay). Just a (hopefully) helpful thought.

I'm sorry you are suffering, as so many of us are.

FYI that if you have a neurologist, s/he can also help you with a medication plan. I found my neuro more helpful than the neuro-oto I saw.

Well wishes for a peaceful day. xo

Hi Wowweee -
Do you feel woozy during exercising? I work out at the gym and do weights. I usually start feeling nausea/woozy and heightened balance issues. It's not bad enough to where I cannot exercise, but I notice it. When I do heavy cardio, I notice it too. I wonder why this happens if it is MAV or inner ear problem.. I feel so much better after I am done excercising though!
Thx, Rachel

Hi Rachel,

Any type of steady mobility can throw me "off", meaning that things like routine walking, gardening, exercising, even vaccuuming, all can leave me feeling off-kilter on some level.

On top of that, I cannot tolerate any kind of "still motion", like elevators, escalators, moving stairs or walkways, and even some gym equipment that requires me to sit or kneel (like the push-up machine where you pull yourself up, but kneel on a moving pad that goes up and down as you do that). I also am not able to sit in a swivel chair and turn, even slowly, because it "does me in".

This does not stop me from doing (most of) these things. I can swim, bike ride, work out with weights, garden/rake/prune, vaccuum, etc., but I know that these more often than not will provoke my head symptoms, so I feel more off-balance for a few hours or a day after I do an event.

I don't have a medical word for this, but sometimes I refer to it as "imprinting" - meaning that long after I am off the elevator (for example), the inside of my head is still going up and down, as well as my body. It's like my body is slow to get rid of the imprinted immediate sensation of doing something like that. It's better now, but I still have it.

I agree, that after I have finished doing something active (except for walking, which tends to be taxing and tedious for me because my head is woozy and I tend to walk or feel pulled to the right a lot), I do feel better. I feel good in part because I did it, and in part because my body just feels better after being in healthy motion.

Even sometimes wearing my hair in a pony-tail can throw me off. And after I take down my hair, I still feel like I am wearing a pony-tail. Wearing my purse on my shoulder can also throw me off, as the gentle swaying of my purse causes me to feel off-balance. Same thing with walking in one pairs of shoes and changing them (i.e., going from heels to flats), or walking from one floor surface to another. I could go on.... :)

Well wishes for a great day! xo

This does not stop me from doing (most of) these things. I can swim, bike ride, work out with weights, garden/rake/prune, vaccuum, etc., but I know that these more often than not will provoke my head symptoms, so I feel more off-balance for a few hours or a day after I do an event.


Hey Wowwwweeee, curiously enough this happened on Monday when I tried to resume a daily workout activity...

Not so much during the exercise, not so much immediately after it, but that se day in the evening...

Add then again curiously enough, I've had another really active day on Tuesday, not an exact workout, but lots of exercise too, and then both Wednesday and Thursday, and even today, I'm quite well, not at a 100% but in the high 90's, where I'll sign anywhere to keep at least like this,for the rest of the month or year.

I still have almost the same cold/allergy state that I had on Monday, and all week long, so... Another point to the MAV suspicion?...

Hi Wowwweee

I don't suppose you remember me but we've talked before (a few years ago - I periodically check in as billy or benny but i've lost my user details)...

As you may or may not remember I was considering MAV as a possibility for my symptoms (I'm nearly at my 7 year aniversary!!!). And thats still the case (though I've not been able to do much about it - stupid health service we have in UK (or more to the point stupid GP))...

Anyway I wanted to congratulate you on a wonderful post - and I'm really happy things are a bit better for you now...

I assume the person in indiana you spoke to was TB (I won't put his name up here cos I'm sure I'll get shot), he's been really helpfull for me also in the past (even though i'm the other side of the world)... a top guy thats for sure.. he's been doing a fair amount of research and studies about MAV..

I have read that some people with MAV can taper off the medications after a few months and that seems to do the trick (ok it might back a few years later and they can just retreat), but I know that's not the case for everyone...

Also some anti depressants and anti anxiety drugs can be used as migraine preventatives, so whoever it was asked about their anti-anxiety medication, the answer is it *could* help, but it all depends which medication it is you're taking...