Well as another year is approaching, I am starting to fall into a deep depression b/c I do not want to spend another year feeling bad. I have gone through all the stages of being scared and panicking over my illness and researching absolutely everything and seeing every doctor possible, to exceptance that this is just how I am going to feel and try and get on with my life, to now where another year is approching...year 3 for me where most people say that the illness dies out at this point and I STILL feel bad. Yes I am doing more...but I still do not feel good while I try and resume my normal life. I have gained weight over this and stopped taking care of myself as I should, have lost a lot of friends b/c social activites are just not as fun anymore and I feel like I have become mean and lost my fun personality b/c i just don't feel good. I just want to feel good again...I have a long life ahead of me and I want to live it. :D
So I have got to figure it out. I would love to hear back on the reports of people trying pills for MAV. I went to see my neurologist again after 2 years and once again she said that I seem fine and do not have the symptoms of a migrainer but still wrote me out a perscription for some sort of scary sounding anti seizure medication that she said may help....I never took it though b/c I am really afraid to take pills b/c of their side effects. I guess I don't really understand the migraine thing b/c I don't seem to have any of the classic symtoms of pain and headaches....I just have more of the buzzing in my head ears ringing, foggy head and I feel this way all of the time rather just in spells. I just really feel this whole thing in my ears and head but all of my tests that I take come out just fine. I can remember the exact second that this came on and my whole world changed b/c of how my head felt. It was like i just woke up and everything felt different. This illness is so weird and I have got to figure it out b/c I just refuse to live like this. I guess I will go the gyno route now and have my hormones checked like Missy7777 said. I mean if she feels 100% back to normal at least the gives me some hope right now.
I just want everyone to keep posting what they are doing and trying till we find a solution to this. It just saddens me so much to know that people are living this way. It is just so hard to enjoy your life properly with chronic dizziness. Hope everyone has a Happy New Year and may we be closer to finding a soultion for our dizziness!

Hi Lauren,

I have been diagnosed with MAV, and have been dealing with my "head symptoms" for fourteen years. It has been a complete life changing/altering experience for me.

Apparently, my MAV was triggered by an acute inner ear issue that was brought on by my face/jaw/ears being exposed to severe cold without protection. I started with BPPV which turned into what I deal with now. FYI my symptoms are DAILY, and include problems that are neurological in symptoms too.

First, a person can have MAV without pain or headaches. Most people think that migraine means "headache", but it actually means "poor blood flow". During migraine, the arteries constrict and spasm, causing different symptoms that can range from on and off, to constant. Depending on which artery is spasming, may mean that your symptoms can vary in length and symptom.

MAV is what it is. Meaning, that if you are truly dealing with that condition, there is no cure. There are good medications to prevent symptoms, but in addition to going that route, it's important to be healthy in other areas of your life, also.

This includes good mental health. For me, dealing came in two parts: dealing with physical symptoms and coping mentally. I am not sure which was harder. For people dealing with a chronic condition, finding an outlet for the anxiety and depression that accompanies something chronic is JUST as important as dealing with the physical symptoms.

Counseling and journaling helped me immensely through the very worst months. I needed to find a way to better cope objectively, and I needed some outside guidance for that. And journaling allowed me to vent EVERY moment that I felt I was going to crack up.

It's hard to be normal when you don't feel normal. And it's difficult to accept limitations when you look back and remember how you used to be before you felt so unlike yourself. I know.

If you do a search on my current user name, and my older user name (Wowwweee), you may find something helpful or encouraging that you can use in your own quest to better deal with what you need to. In some of my posts I have talked about the medications I have tried and currently use.

I hope in the New Year, you come to realize your inner strength to cope with the things that you need to.

Take good care.

Thanks Woweee for the advice. I know dealing with the depression is part of the battle. It is just so hard when the reason I am depressed is b/c my head feels so bad. Bleh...it is a vicous cycle.
So are you currently taking any medication for your MAV? It sounds that if that was the problem then you could find something to fix it. It just seems that everyone is being diagnosed with MAV now, but no one has said yet that they are better from taking the meds for it. Maybe I have just missed those posts. I will stay tuned to see if anyone has anything promising to report. :)

Hi Lauren,

What was the medication the doc gave you exactly? It sounds like it was a migraine med. I would seriously consider trying it. You have to weigh things up: do you keep living with the daily garbage vestibular migraine produces or do you try something new and possibly knock it out.

I don't agree that there is no cure. Some people, with treatment, are able to stop the migraine meds after 2 years or so and be symptom free. Not all but it does happen. One thing's for sure though - do nothing and nothing will change.

Good luck ... Scott :cool:

It just seems that everyone is being diagnosed with MAV now, but no one has said yet that they are better from taking the meds for it.

You've missed those posts. There's been many of them.

There are just as many with an irrational fear of medication as well though. You may have to try 15 meds to find relief.. but its worth it.. you just have to steel up and do it..

The "I'll try one and see what happens.. oh.. its not working.. mustnt have MAV" approach is definitely a quick route to treatment failure. Happens all the time.

Some of the studies I've read have shown those that follow through with a proper medication trial and lifestyle modifications have a 90% or higher chance of improving.

Some of the studies I've read have shown those that follow through with a proper medication trial and lifestyle modifications have a 90% or higher chance of improving.

Adam..I love those odds.

Lauren, I just got diagnosed with MAV too. I am trying a med right now. My doctor has high hopes of really getting back to 100%. He said that most do...and said even those that don't get to 100% get really close for the most part.

Keep your chin up.

Hi Lauren and all,

I had excellent results with a medication called Amitriptyline. It's an "older" anti-depressant medication, but more recently has been found to work on physical symptoms of some types of vertigo, MAV, and is also used in the relief of menstrual cramps.

I took it and within three days my symptoms stopped completely. For me, that was one of the classic indicators that I was dealing with MAV, among some other usual symptoms that pointed to that diagnosis.

I stopped taking this medication because I developed a severe side effect - but since not everyone reacts to medications the same, others have taken it with good results and NO severe side effects. After a few years, I wanted to go back on it because it worked so well for me, but my physician steadfastly refuses to provide it to me even at the lowest dose because of the side effect.

I am medication sensitive, and after trying three medications for this condition with unpleasant side-effects, I stopped trying them. I have two neuro's who both have suggested two different medications to now try, but I am anxious about it so I have not approached that.

Currently, I take two plain 500 mg aspirin mixed with one teaspoon of children's liquid cherry flavored Benedry. That takes the hardest edge off my symptoms so I am able to go about my days with bettet tolerance. Of course, always check with your doctor before trying something like this. My MD would like to see me off of the aspirin, but it's the only thing that I am comfortable with that touches my woozy headaches.

Hey Scott, I hope things are well your way! I've seen so many specialists that I don't recall who told me that there is no cure for MAV - there are only drugs to control it. I think it was my neuro. With age, many women "outgrow" MAV with the onset of menopause - but once you have it, it's usually something that can be managed but not "removed". It's something that you are predisposed to or already have, but how it manifests and develops depends on your family physical history, and your own individual make-up. And yes, symptoms can be helped or triggered into remission, but remission does not mean cure.

xo

I am glad you are trying the hormone route Lauren - it wouldn't hurt to try it if makes you 100%! I too was fed up with this junk. Living daily with this seasickness, not being able to do much, and I have 4 children to raise! Once I started balancing out my hormones with supplementation, I have been cleaning non-stop, doing activities, driving, shopping - all normally with no anxiety and dizziness. So it is definitely worth a try! I would LOVE to hear of another success story such as mine.

If your doctor poo-poo's the hormone idea - please don't get discouraged and just nix the idea. Like I said, there aren't a lot of docs out there who know much about hormone imbalance. You have got to find a physician who is knowledgeable about this.

There is one message board that I visit frequently (not this site) that deals ALL with menopause/perimenopause/hormone imbalance and you will find a lot of information there. I can't mention the name here but I'm sure you can find it doing a search.

I had all of your symptoms. In fact, like Woweeeeeee's list of MAV symptoms, I had all of those constantly too. And they are completely gone now. They disappeared without a trace about a week after using Divigel.

Blessings to you - keep us posted!!

Hmm I don't remember the name of the migraine medicine that I was prescribed, I jsut remember looking it up and being freaked out by it. Anything that effects the receptors in your brain just seems frightening to me. Plus my doctor that I saw didn't even really think that anything was wrong with me or that was the route I needed to take. After all these years I feel I just haven't found a good doctor or one that I trust. I always feel that I know more about this condition than they do.
I need to take some sort of new route though...whether it be MAV again or the hormone thing. I just feel like I have seen so many doctors and none of them have really steered me in any sort of direction and I can't tell you how many of them have told me that this is the end of the road for us and there is nothing they can do for me.
I guess I am just so confused as what to do at this point. Plus the big thing is that I no longer have insurance from not working so I can't just make tons of doctors appointments.
Anyways...thanks for all of the advice from everyone...I am just trying to stay informed of what is working for others!

Hi Lauren,

I just saw your post and I could not have written it any better; your symptoms, your thoughts, your experiences, it is all me. I often tell the doctors that I can feel the buzzing in my head that is causing the tinnitus and they stare blankly at me. Other times my head just feels heavy. I have improved in time, but I know how you feel, it is just plain tiring to have it keep going with no breaks. The lack of friendship and loss of interest in things and the weight gain just all adds to it.

I was prescribed klonopin (anti seizure med) for my headaches and it caused so much more harm than good. I will be off it a year February 1st and still have some small side effects from withdraw still lingering. I don't know of anyone that these benzos have helped (well maybe Howie with the exception). I think you would probably have better luck with an AD.

It must be really hard to not have the insurance to help deal with this crap either. Now that you are married, can you go under your husband's? If not, why not look into some government assistance. That would at least relieve some of your stress so that you can try and move forward with a plan. I am seeing my neurologist Tuesday and think I may bring up the AD route. I figure at this point, it couldn't be any worse to try one than it already is and just maybe it will help.

I can also tell you, if you can find someone for biofeedback, it is the only thing that has seemed to help me. It has really helped with the anxiety from this junk. If I could, I would send you a copy of my CD that I got from Michigan Headache Institute. It has some relaxation and self hypnosis exercises that are very similar to the biofeedback process. If you do a search on their site, they offer the cd for sale. It is really worth it, and I have tried a lot of things the past three years.

I will let you know if I try the AD and the progress with it.

I know it is hard Lauren, but chin up.:angel:

Hi Lauren,

Regarding your current no insurance issue: you may want to speak to your doctor about getting some sample medication if you have no insurance, or calling the medication manufacturer yourself to see if they can't assist you.

I agree that reading about the side effects can be scary. However, I will share with you that while I was on the Amitriptyline I felt GREAT. It certainly masked my symptoms 100%. The side effects that I experienced from taking that medication stopped within one week of stopping the medication. You may want to try something just to see if it works for you. Most of these medications you can take in small doses, so you can work up to it if you are anxious.

Just a few thoughts. xo

Amitriptyline isn't a drug to mask symptoms.. its a preventative so should stop the whole migraine mechanism from being in action. It should clear up or improve most migraine-related symptoms if it works.. not mask them.

I feel that's an important point as often when people refuse to take migraine drugs they say 'but it just masks the symptoms.. but I want to fix the root cause'.. which isn't really true.

Admw......have you take meds for MAV and are better now?

A lot better... yep

I take (daily) pizotifen 0.5mg, keppra 500mg and neurontin 300mg

A lot better... yep

I take (daily) pizotifen 0.5mg, keppra 500mg and neurontin 300mg

why so many migraine meds? are those all for migraine

C&R everyone is different. Different symptoms...different threshold levels. Some feel great after 1 med, starting dose...some 1 med, highest dose...some 3 meds...different doses....