Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

wow great post. I too hope this makes it into the database area of this forum. Boy i have lots to think about. Good think i'm going to dr. finally on tuesday

I am anxious to see what he has to say I guess i'm wiling to try something maybe the betahistine is next i guess it can be helpful for both MM and menieres. hope so. still not sure what i have even after reading all this - maybe both!

chrisb

 

Hi Taximom,
Thanks for sharing your area of experience and knowledge here. All Scott and I did was to get the subject rolling with the basics to educate others to the possibility of migraine as the cause of their meniere's-like symptoms. All we can do is cover common threads about migraine but details and specifics are as varied as there are individuals. So we post the basics of the condition of migraine and our own personal experiences, and then leave the thread open for the personal experiences of others to share the details of their stories or to ask questions. Just as much as you have not covered details about inhaled offenders which is my experience, I have not covered details pertaining to celiac disease for that is your experience. And yet because we have both shared, 2 subjects are covered to the benefit of others looking for answers. Thank you so much for sharing what you know. All of it is important and I appreciate your contributions to the overall thread.

 

Hi again Taximom,

I can't comment too much (well, at all really) on gluten or celiac are they are not things I experience, nor have I read up on them. I do identify with what you've said about low blood sugar, from my own experience. I need to keep things level there or risk upsetting the migraine monster. But there are a whole range of "triggers" - including for example the weather and hormonal changes which are of course nothing to do with things we "shouldn't" be exposed to.

I will just say that I'm not sure I agree that migraine can ever be a "symptom" of celiac or anything else. I think it's more likely they are co-morbid. People with migraine, as well as the experts, will tell you that the migraine brain does not like to be 'upset'. Burd and Scott covered this in their excellent summaries by talking about it like a diva or a thoroughbred - so if a migraineur had celiac it would make sense that they get that under control as much as possible so as not to upset the migraine brain.

I hope that makes sense.

 

Taximom,

I had a good search of Pubmed (which returned just 10 articles with CD and migraine as a MeSH heading) and you are correct that some people with CD also experience migraine, but they also experience many other neurological phenomenon as well and the vast majority of migraineurs do not have CD. Twelve percent of the US have migraine or about 37 million Americans. By chance alone, a number of those individuals will also have some other condition such as CD, or diabetes, or CVD, or MS or any number of conditions.

If someone has CD or a gluten intolerance and migraine symptoms as well, of course it makes perfect sense to eliminate gluten-containing products to see if it alleviates that person's migraine. Our article goes on at great length about identifying triggers and removing them. Just like Burd previously eliminated milk products, and I have had to remove caffeine, nuts and cheese to find relief, so too would a person with CD who would remove gluten. I think that's pretty clear.

There's no jump being made that the predisposition to migraine is in the genes. There is no controvery here and there is overwhelming scientific evidence to support it. There are a number of genes that predispose a person, some of which have been recently isolated.

Your posts here will help to make people aware of gluten and wheat as a potential trigger they can consider as they work out what it is that may be feeding their chronic migrainous state.

Thanks for your input. S

 

I have consistently edited my database "Info for Newbies" thread to include triggers, causes, and treatments that people have requested. I would be happy to edit it to include inhaled triggers if you would post the info on that thread. Most of my edits have been done at the request of forum members.

 

My discussion of the genetic predisposition to migraine was in response to Imnoscientist's assertion in reply #18: "Nothing "causes" migraine - it's a genetic condition. "

 

The rate of migraineurs with CD is 10 times higher than the rate of people with CD in the "normal" population. Some of the studies you turned up mention gluten-induced demyelination in the brain; there are others on gluten-induced ataxia. I'll be happy to look them up if you need me to, but I'm sure you can find them.

You are mistaken in assuming that I think people with already-diagnosed CD need to look at gluten as the cause of their migraines. My point is that people with migraine need to look at the possibility of CD/gluten intolerance--and that they are not likely to do so unless articles such as yours (as the lead post of this thread) include it.

The reason I have frequently edited my database post "Helpful Info For Newbies" rather than just letting people post their info as a sort of addendum is that, as you know, most people looking for information read only the first post or so of database threads.

Just think, Studio--if this thread gets 1000 migraineur readers, 40 of them are likely to have undiagnosed CD, and even more are likely to have GI,--and by editing your original post to include CD/GI as a common trigger, you can help 40 people avoid debilitating migraines.

Isn't that the whole point of your original post--to help as many people as possible?

 

Good Read guys...Thanks for the Effort... Scott and I started basically the same time... In 2003 I started with Dizziness, Nausea, Blurred vision, Horrible Anxiety, Pressure in my head in the front. Thankfully I never had a vertigo attack. My symptoms were basically 24/7 to various degrees for 2 years undiagnosed. I was Diagnosed first by a Neuo-Otologist in NYC who sent me to a Headache Specialist. he diagnosed me with MAV and added Verapamil to the Zoloft I was from the Anxiety of the Condition... I was able to reach 90 to 95%. I have never really found true food triggers. The weather affects me especially in the fall and spring.. If I do not get a solid 7 to 9 hours of sleep it affects me. 2 months ago I stated to get low pitched hearing loss in one ear and some echoing. I was tested several times . I was given a new Brain MRI and tested for LYME. I was diagnosed with MM in addition to Migraine... I am now on a diuretic in addition to Lipoflavin and Ginko as per my Dr. Lower sodium diet.. I actually am starting to get back to 90% besides the mild hearing loss. I will deal with that... I hope all of us are able to Manage in the best way we can....I also do meditate or biofeedback and go to the chiro once a week....

Thanks again guys....

 

Hello Howie. Did the verpamil give you any adverse effects?

 

With me no...From what I hear it can cause major constipation... I also had normal blood pressure in the high range so it was fine with my BP.. Only issue I had was some urinary retention mild

 

Thank you for sharing your story Howie.

 

Re: Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

To experiment with whether or not you are affected by inhaled offenders, here's a few notes...
Although I had to go drastic to eliminate or dramatically reduce mine, (removed carpets and put down laminate flooring, got rid of fabric furniture and went with leather) there are a few things you can do before going that route that will require a bit of time but certainly do-able and will cost relatively little to see if you feel improvements.

Eliminate fragrances from your home.  Go scent-free on everything.  Stuff you use for your hair, your body, your soaps, your laundry care, get rid of room deodorizers, don't use scented cleaning chemicals, anything that leaves a scent. For cleaners, vinegar is excellent, mix with water.  I also use a light bleach cleaner, no scent, with good ventilation it dissipates quickly.  Unscented soaps are good.  There's other options.  Rubbing alcohol mixed in equal parts with water, excellent.  I use things that leave no lingering scent if they are scented at all.  I can give further details if needed.

Dustmite proof your bedroom.  Before I got well, I was my sickest from being in this room.  Get allergen covers for your bed, both pieces and your pillows, wash all your bedding weekly in 145* (don't forget to turn the thermostat back down again when done), including the pillow covers.  Vacuum the allergen-proof covered bed each time.

Eliminate as much dust as possible from your home, under and on furniture.  Fabric furniture is a haven for dust and dustmites.  Vacuum it deeply and thoroughly and often if you can't afford to get leather. Same with curtains, they hang on to dust like you wouldn't believe.  Launder them. If you must dry clean, let them hang out in the garage for a week until the chemicals dissipate.

If you must have pets in your home, vacuuming is vital.  I also recommend a good Hepa air filter unit.  You can get one for about $150.  Got to be Hepa.  Which I also recommend for a vacuum cleaner so you aren't blowing dustmites and debris out it's backside. In one end and out the other.  I use to feel effects after vacuuming with my old one. Oh, about pets, don't let them sleep with you.

For now get rid of your houseplants.  Don't kill them by placing them outside, but let someone babysit them for a spell.  Even if you can't see the mold, if you have plants, it's there.

Don't allow smoking in the house.  Wood stoves and fireplaces, tricky, I don't have them but smoke and dust and wood debris could be a problem.  The air filter could help.  During an experimental phase, just not use them for a month or so?

Keep the house clean, no dust build up.

Do this for a couple of months, see if it makes a difference.  Don't buy any new electronics from computers to stereo components to new tv screens, etc, for this time.  They seriously outgass and what is tricky is that you often don't smell them.

Anything else that is obvious you will know.  When getting fuel at the pumps, roll up your windows or whatever else you can do to avoid breathing in the vapors.  Don't mow your yard, have someone else do it.  Besides the fumes from the mower running, there is lawn debris kicking up like crazy. Stay away from chemicals such as paints, solvents, and other industrial products.

For things unavoidable, there are very effective soft filter masks you can get from any industrial safety supply store.  Look for odor blockers.  They are disposable but good for many uses. I use these and have found them locally...
http://www.masksnmore.com/3m8247r955pack.html

 

Thanks Scott and Terry for putting this together.
Well done.

 

Burd,
What would you suggest for women whose symptoms are related to their monthly cycles? Is there anything special they can do to find relief?

 

Re: Migraine Associated Vertigo (MAV) – Misdiagnosed as Meniere's

That's complicated because we can't alter that.  But if other triggers are kept at a minimum and health is at a maximum, it makes the things we have no control over a bit easier on our bodies.  Dr. Buchholz explains threshold.  As migrainers we all have that line where we can take no more offenders without consequences.  When we are doing well, we are under that threshold line and can handle offenders better, we can even indulge in some of our favorite foods, that trip migraine, without consequence.  Because even though it is affecting us, it's still under threshold.  Once we get close to or bump over that level of tolerance, then the smallest thing can affect us and send us into a bad reaction.

It's like a bucket.  For each offender, or length of time exposed to one, picture water being added.  We can still handle offenders fairly well until that water level goes over the top. Then the symptoms come on strong.

I have found that as long as I am doing well with everything else I have control over, and my symptoms are at a minimum, then when I am hit with something I have no control over, like hormones, I deal with them better than if I am feeling poorly and the hormone fluctuations hit.  Also, some don't take regular medications for migraine relief constantly but do so when they have a need, you could look into this if your reactions are significant, to use during those times when your symptoms spike.  I have not had to take prescriptions and can't recommend anything.  Once in a while I will take acetaminophen for a reaction along with dried candied ginger and that helps relieve things a bit.  I must be very careful about everything when I am that sensitive.

 

Does anyone have any opinions on Botox... ??I saw that this was FDA approved for Chronic Migraine - 14 days or more a month. This was asd on a few studies that came back successful. I saw the article on WEB MD

 

Jordan, my migraine is affected by horomones. Both my primary care doctor and my migraine specialist encouraged me to try magnesium, 500 - 1000 mg a day to combat that. I think the magnesium helps me greatly. Of course please check with your doctor first, but I don't think there are any terrible side effects.

 

Hey Spark -- magnesium can cause an upset gut for some so good advice to start low dose and work up me thinks. I know another guy who can't go near it without massive problems (sitting on the loo all day long). It ramped up IBS for me unfortunately.

I can't believe that even magnesium can be problematic. Grrrrr

 

I get "typical" migraines. I also get occipital neuralgia. The latter are extremely painful. Migraine medications have little affect on them. My husband used to keep a 9mm gun in his nightstand. One morning I wrote him a note asking him to remove the gun, either from the house, or move it to another location where I wouldn't know where it would be. I have plenty of medication that I could take a bottle of pills and overdose, but the thought never crossed my mind. But when I get that occipital neuralgia the thought of that gun kept coming into my mind.

The neurologist gave me a medication called Mexiletine, lidocaine in pill form, that helps with the pain. Lidocaine injections help but they only last a few hours (why bother). Botox injections would be a God-send for me. I'd still have to deal with the typical migraines. The other day my husband brought home ravioli's from a favorite restaurant and I threw caution to the wind and paid dearly the next day. Aged cheese is a definite trigger for me. Food doesn't affect the occipital pain, that reacts to stress. This all takes time and self-awareness and a willingness to make changes and be honest with oneself. It's not easy. It's definitely a process.

 

I'll have to respectfully disagree with the statement that nothing causes migraine. While there is probably a genetic component to it, I never any sign of migraine in my life before five years ago when my vestibular symptoms started. While I was officially diagnosed with MM, time spent here on the forums and discussions with my oto and my ENT/Allergy doc lead me to believe that MAV causes many of my symptoms. I don't have headaches, but I have had the aura and other migraine symptoms associated with my attacks.

In my case, and in the case of at least one other person here, it's clear that my MAV is caused by Candida. The metabolic byproducts of Candida include a number of potent neurotoxins. My belief is that the build up of toxic Candida byproducts can trigger migraine.

While It's true that not everyone here has MM/MAV due to Candida, I firmly believe if you have migraine/MAV that anti-fungal treatments should be attempted, especially if your symptoms are food related.