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Old 11-03-2007, 07:42 AM   #1
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meniero HB User
VN to BPPV to MAV..lots of MAV questions!!

Hi There, I'm on a mission to find answers! I know there are alot of you out there with great MAV knowledge. After leaving my Dr's office yesterday, I just felt so grateful that I could come home to talk to all of you! Well, I should say first I was diagnosed with Meniere's disease by my local ENT (hence Meniero), who wanted to put me directly on a diuretic, I went for a second opinion to an Otorhinolarygologist and had the VN diagnosis that turned into BPPV, have been battling recurrent BPPV for one year and now just in the past month or two started having symptoms separate from BPPV, no nystagmus, just jumpy eyes, off balance, motion sickness, bad hangover feeling around menstruation, I'm thinking that was my warning for my major attack 3 days ago. Now I am at about 85%, feeling like I'm recovering from a wicked hangover. So, when I went to my Dr., he now has changed his dx to MAV. And has informed me that there is no way to tell when and if it will happen again, but things could be worse - so easy for him to say isn't it. I do agree with his diagnosis as I have always been a car sick, sea sick person, history of headaches, migraines w/aura in my mom and grandmother. So, here are questions:

Could those days of feeling foggy been my warning for the doozy I had when I couldn't see straight or walk a straight line, in bed for 2 days? Does anyone else get those warning signs?

How often are you getting these vertigo migraines? Do you some of you live with this everyday? Do some of you only get them occasionally?

I did not have the headache with my attack, is this typical?

Are all typical migraine triggers considered vertigo triggers? I'm thinking mine have to do with barometric pressure (weather) and hormones mainly.

How do I explain this to my family and friends? I've been saying something like, "if I were to normally get a migraine, I will get vertigo instead"...not really sure what the heck I'm talking about here...ha! My friends and family are concerned, I wish I could have a better answer for my sake and theirs!

Should I see a naturalpath or pharmacist to be sure my diet is in order (I consider myself to be physically fit and for the most part don't eat a lot of meat or fast food)? Should I have other levels tested?

I will read Heal Your Headache. Does it talk much about MAV?

And is MAV the same thing as Migrainous Vertigo?

Sorry for all the questions! Thank you, thank you, thank you!

 
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Old 11-03-2007, 10:00 AM   #2
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Re: VN to BPPV to MAV..lots of MAV questions!!

Has the doc put you on a preventative migraine medicine? You should check ou the migraine diet and eliminate any of those triggers. I hope this new diagnosis finds you relief!!!

 
Old 11-03-2007, 10:18 AM   #3
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Re: VN to BPPV to MAV..lots of MAV questions!!

I am in the same boat as you, meniero, and have been since March of this year and am STILL seeking answers! I have not ventured into migraine preventative medication YET. Not saying I won't ever, but for now it seems that preventive meds can cause a whole slew of their own problems. For now I am watching what I eat and following the diet strictly as pointed out in that book you have read. I must admit, lately I fell off the wagon just a tad with the diet and I have felt pretty cruddy too. So I'm back in the saddle and gettting strict again with it. I take LOTS of supplements (coenzyme Q-10, B-Complex, Magnesium, etc.) - vitamins that are supposed to help migrainuers. I am starting on natural progesterone and phytoestrogen creams, plus taking Estroven to sort of help even out the hormones (which is also a big trigger as you know).

But this is what most people will tell you - in order to get the migraines under control, which will them eliminate or alleviate your horrid symptoms (dizziness, nausea, etc.), you have to nip the migraine in the bud by STOPPING it from ever becoming active. And one of the sure fire ways of doing this is to find a preventive medication that is taken daily. Some will make you feel worse before you feel better. Some you will not be able to take at all because of the side effects. But since there are about 100 different types of migraine meds, you are sooner or later bound to find one that is right for you. However, it does not mean that this med will work forever for you (as others will attest to). Sometimes the meds stop working, and then it is time to seek out another.

I personally am too afraid (for now) to go down that road - seeking medication to get my migraines under control. What am I doing now? I am using the abortive way (Advil, Vicodin for headaches), Reglan for nausea, Ativan for anxiety/dizziness. I must say though, that controlling my diet (or using supplements, or both) has eliminated about 85% of the dizziness that I was experiencing, which to me was the most debilitating part of the whole thing. Now I have to mainly deal with headaches and occassional nausea.

Sorry for going on so long! I'll let some of the others talk about this (Hbep, Howie, Scottsman, Adam) - these are veterans of MAV.

Last edited by missy7777; 11-03-2007 at 10:19 AM.

 
Old 11-03-2007, 12:01 PM   #4
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Smile Re: VN to BPPV to MAV..lots of MAV questions!!

Hi,

I have been dealing with MAV symptoms for a VERY long time. Talk about being a veteran! I lurk on here, but rarely post anymore.

Unfortunately, many symptoms of vertigo, imbalance, etc., mimic so many other conditions, that sometimes it is difficult to pin down a diagnosis. A sufferer (like yourself or myself) may be given numerous diagnoses for just this reason.

If you do a search on my current user name and my olders user name (Wowwweee), you might find some helpful additional information on MAV.

Onto your questions:

Could those days of feeling foggy been my warning for the doozy I had when I couldn't see straight or walk a straight line, in bed for 2 days? Does anyone else get those warning signs?
I think it's different for everyone. There have been times when I experienced "true" vertigo (spinning, confined to bed), that it seemed that I had no warning signs at all. However, over the years, I am "fine tuned" to my head, so usually I can feel "something" different about my symptoms that makes me know it is going to worsen, or if my ears are congested - that will bring it on. However, sometimes, I feel like I am in the verge of going into a spin, but the symptoms do not escalate to that point - although I really believe they are heading that way.

How often are you getting these vertigo migraines? Do you some of you live with this everyday? Do some of you only get them occasionally?
I have headaches on some level every day. My headaches always start first, then the "head symptoms" follow. Over the years I know when to treat the headache versus simply tolerate it, in terms of dealing with the accompanying wooziness.

A person dealing with MAV may only have one round of vertiginous episodes, and never get another "attack". However, again everyone is different, so another person may be dealing with MAV symptoms only a few times a month, while others may only have an event every few years. Then there are those who deal with MAV issues daily (this is me).

I did not have the headache with my attack, is this typical?
You DO NOT have to have a headache to have an MAV event. "Migraine" means "poor blood flow". It DOES NOT mean "headache". With MAV, the arteries in the brain go into spasm and constrict. Depending on what arteries are impacted can determine your symptoms. Symptoms can vary, which means your degree of head symptoms and headaches (if you get them), also can vary.

Are all typical migraine triggers considered vertigo triggers? I'm thinking mine have to do with barometric pressure (weather) and hormones mainly.
Headaches and vertigo can, in theory, be triggered by the same things. Regarding women dealing with MAV, hormones can play an impacting role in your symptoms. I am impacted by my menstrual cycle, certain foods, weather changes, spatially (visual), movement, and stress.

Note that majority of females who deal with MAV usually see a reduction or clearing of symptoms by the time menopause hits (that's a way to go for me - blagh).

How do I explain this to my family and friends? I've been saying something like, "if I were to normally get a migraine, I will get vertigo instead"...not really sure what the heck I'm talking about here...ha! My friends and family are concerned, I wish I could have a better answer for my sake and theirs!
The people that know me very well know the gory details - everything from how limited I have become, to when I need to rest, to the anxiety issues that I've developed from dealing with feeling so imbalanced...I had to literally sit a few friends down and explain to them what this meant for me physically and emotionally because some people just don't "get" how life changing it is to have your world changed due to vertigo/imbalance. Sometimes just walking to the mailbox is a challenge.

For those that don't need to know (and during work), I simply tell people that I am dealing with an inner issue that causes me to have some imbalance issues. People seem to understand that the best, and everyone can understand how an inner ear problem can cause "dizziness". I cannot tolerate elevators, escalators, flying (to name a few), and in the business world, I am simply cut and dry about my explanation.

If you react calmly to your condition, others usually will follow. Don't be upset by well-meaning people who say "but it's just dizziness". They clearly don't know your battle. And if someone wants to know more, I gladly tell them.

Should I see a naturalpath or pharmacist to be sure my diet is in order (I consider myself to be physically fit and for the most part don't eat a lot of meat or fast food)? Should I have other levels tested?
It's not to hard to understand what it means to eat healthy. Eating healthy is just a part of staying fit though. You know the drill: get good rest, be mentally healthy, stay hydrated, exercise, keep positive.

I am sure you have discussed your symptoms with your physician. To go one step deeper, if you haven't already, ask for some blood work (thyroid, diabetes, anemia), and request a "heart exam" (some forms of dizziness are caused from a heart problem), and you can always ask to have an MRI of your brain (some forms of dizziness are caused by MS or tumors).

I will read Heal Your Headache. Does it talk much about MAV?
I read this book. It touches on many different types of headaches. It's very motivational and informative, however, not all people with MAV will find alleviation through it. You may find something beneficial from reading it.

Remember, there is NO CURE for MAV. It is what it is.

And is MAV the same thing as Migrainous Vertigo?
MAV = Migraine Associated Vertigo. Also known as Basilar Migraine, also known as Migrainous Vertigo.

What helped me the most was an older prescription anti-depressant medication called Amitryptyline. The Ami has been found to work well on migraine and vertiginos symptoms for some reason (not clearly defined by anyone I talked to). I was taking 12 mgs at night. Within three days my headaches and other head symptoms went away completely. Unfortunately, a few months into taking it, I developed severe side-effects so I needed to stop taking it. But it was GREAT.

Currently, when my head is really bothersome, I take two plain 500 mg aspirin mixed with one teaspoon of Children's Liquid Cherry Flavored Benedryl (always ask you doctor first). This works VERY well for me, and usually within 30-40 minutes after taking these two medications together, I am able to get past the most bothersome events (unless I am completely spinny, then that just needs to work its course - but I still continue to take this combination when I am confined to bed).

Also, on really bad days, when my sense of balance is really "off", I put cotton in my ears to give my body a sense of being grounded.

I hope this helps. xo

 
Old 11-03-2007, 04:40 PM   #5
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studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User
Re: VN to BPPV to MAV..lots of MAV questions!!

Hi Meniero,

I think it is very possible that you could have followed this path: VN -> triggered the migraine state and thus MAV -> BPPV events.

In fact, I think this is exactly what happened to me. I was a migraineur before any of this started but on a subtle level. No crushing headaches but tons of neck pain and tension type symptoms (I never attributed this to migraine years ago). So along came VN or labs and while the initial blow came and went within the 6 weeks, migraine took over and kept it going indefinitely until I threw an SSRI at it. If you have read any of the past posts (summarising a few science papers on the topic) I put up on this, migraine and BPPV are highly co-morbid. In other words, having MAV makes you much more likely to develop and have BPPV attacks. And this from a large July study on BPPV:

"The frequency of migraine was three times higher in idiopathic BPPV than in BPPV secondary to head trauma or surgery."

I'd say, get on the migraine preventative meds and you'll see the back side of this.

Wowwwweee - I'm still not clear on why you are still putting up with MAV when there are so many other meds out there to try for migraine prevention - especially when you cleaned it up completely with amitriptyline - a sure sign you CAN end this with a more suitable med. If I was told eating coal and mud for breakfast would end this, I'd be eating it.

Best ... Scott

Last edited by studyin; 11-03-2007 at 06:36 PM.

 
Old 11-04-2007, 02:14 AM   #6
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Re: VN to BPPV to MAV..lots of MAV questions!!

some interesting advice on here ,

I am taking the amitryline , and all its done for me so far is make me soooo tired.


I had my monthly last week and all the symptoms came on strong ,

head pain (stabbing and throbbing) , unbalanced ,dizzy, sick and blurrey eyes.
This went on for 3 days flat.

Then on Friday lunchtime I ate for the first time in 3 months , one bite of dark chocolate then friday 4pm I started feeling terribly off balance and it lasted untill saturday 4pm. So do you think the chocolate did this ?

I am also starting some progesterone cream , which they claim can help migraine. I have books called "what your doctor may not tell you about perimenopause" It explains how the hormones can cause a menstraul migraine and how using a progesterone cream can stop this.
Note : only use a oestrogen cream if you are not having periods because you can make migraines worse.

If you are having periods , you use the cream from day 12 of your cycle up to 2 days before your next period, this will help balance your hormones.
It can take up to 3 months to restore proper balnce however you may feel the benifit after 4 weeks .

let keep each other informed on how we are doing

 
Old 11-04-2007, 04:52 AM   #7
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Smile Re: VN to BPPV to MAV..lots of MAV questions!!

Hey Scott,

I think of you often.

The last medication I tried left me with losing the ability to swallow - after a few bad reactions to some of the medications I've trialed for the MAV, I just don't want to keep trying any more - at least for right now.

I seem to be tolerating better these days, which leaves me feeling a little more normal these days. I have been thinking of trying out a movie theater to see how that goes.

Thanks for the encouragement though. xo

MNSK,

If the Ami is just making you tired, maybe you should trial something else? I got relief with the Amin in three days.

Just a thought.

As for the cream, I would not use it, but that's me. I would not be comfortable using something to manipulate hormones unless I am doing it with my doctor's approval - there are too many variable factors, and there are so many useless creams, ointments, etc. out there that CLAIM things but do not deliver. At least make sure the cream you are using is FDA approved, and get a few more opinions before basing your decision from reading just one book.

Take care. xo

 
Old 11-04-2007, 05:52 AM   #8
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Re: VN to BPPV to MAV..lots of MAV questions!!

the progsterone cream is fine to take and totally safe to use , my gp is fine with me trying it. Infact if you take a progesterone (man made ) contraceptive pill you will be getting 150mg +,,, for your body to absorb 50mg , this is because the liver gets rid of most of it.
The progesterone cream is only a tiny dose that is bing absorbed so it stops you getting all the nasty effects that you can with the pill.

I used it last year to regulate my periods and it worked , so it must be in there , also I purchase from Oasis online , and they have strict guildelines .

Its oestrogen that you need to be careful with , this can give you all sorts of problems . I had a test done that states I have no progesterone and normal oestrogen. This can be a cause for menstrual Migraine.

Hope this helps.

Last edited by mnsk; 11-04-2007 at 05:54 AM.

 
Old 11-04-2007, 05:52 PM   #9
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meniero HB User
Re: VN to BPPV to MAV..lots of MAV questions!!

I just can't thank you all enough! Wowee, thank you so much for taking the time to answer all of my questions. I printed all of your responses out last night to read to my husband and I started to cry. I cried for each of you that have to suffer with this even more than I do. And I cry because this is a new challenge in my life that I must be strong enough to endure. So, thank you for being strong enough for me and coming on this site to offer insight, support and advice. I've decided to start a journal to record what I eat and my day to day activities especially during my time of the month. I am thinking of seeing a neurologist and my ENT to just get all my ducks in a row and to be as prepared as I can be for the next time I am stricken with this. I am not ready to try an everyday preventative medication and I hear so many conflicting stories about the progesterone cream I guess I just have to see what works for me. I have to get on an airplane in January for the first time since my diagnosis and I'm scared, but I'll just take one day at a time! Let's please keep in touch, I don't know if I can make it through this without all of you, sorry to be so mushy..but it's true!
Take care, M.

 
Old 11-04-2007, 06:13 PM   #10
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Re: VN to BPPV to MAV..lots of MAV questions!!

Hi M,

Don't be afraid of the upcoming flight. The worst that will happen is you'll feel off for a bit when you get off the plane but with some rest you'll be back where you started. I've had a bad head lately but was OK to make a trip to and from Sydney, Aust and Toronto. Over 20 hours in various jets and massive jetlag. It was no party but it was very doable. The trick is to be calm and not let anxiety enter the picture...just know you willl be fine. While on the jet use ear plugs to kill the noise and help to reduce sensory input. Worked really well for me.

Best ... Scott

 
Old 11-05-2007, 03:28 PM   #11
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Smile Re: VN to BPPV to MAV..lots of MAV questions!!

Hi M and all,

I'm glad my reply was something that impacted you positively.

It's great that you are able to share this on some level with your husband. Not all partners are as tolerant.

It's a great idea to start journaling. Not only is that a good method to find out if there are any patterns to your symptoms, but that is also a great way to reduce stress and anxiety. I did A LOT of journaling during some very tough months. I carried my journal with me, because there were times that I was so overwhelmed with stress and trying to cope that it was one of the few ways that I was able to keep calm when I felt out of control. I bought a pad of paper that looked like it could be used for work, so no matter where I was, it always "fit".

During times that I felt stronger, I was able to look back through my journals to see progress. And in my weaker times, I was able to see how strong I was when I battling things.

So good for you!

I think it's good to follow up with a neurologist, especially since you are dealing with a possible headache issue.

I agree with Scott on flying. I live in NY and took a 5 hour flight to Las Vegas a few years ago (my first time flying since onset on head symptoms). I had a increase in symptoms through the whole flight, but it didn't escalate into anything that I couldn't tolerate. I was fine when I got off the plane, and for my whole week's vacation. I was VERY panicked the night before I had to fly back because I just didn't want to fly home knowing that my head would feel woozier during the flight, but what worked for me on the flight home was knowing that I would expect to feel increased symptoms, and headphones for listening to music over earplugs.

And despite my head symptoms on the plane, I was able to read, stand up and walk to the restroom, and look out the window. The symptoms were distressing but NOT dangerous.

When I got off the plane to go home, I felt a little bit of an increased swaying in my head for a little while, but nothing that prevented me from doing anything or going to work (I work full time).

Some people with head symptoms don't have any problems with flight. I am friends with another person who used to post on here. He and I keep in touch, and he has taken more than a few flights with NO problems at all. And yet, he is still bothered by head symptoms "on the ground".

M, thank you for your tears of support. Yes, having head symptoms are HORRIBLE. There is no other way to describe it. It's like everything you knew about yourself is turned upside down because even your own body and head feels foreign. I know.

But you know what else? What we struggle with is so much less than what some others continually battle. Not to say our condition is less impacting. But believe it or not, I have found some good things that have come out of dealing with something so life changing:

I am more tolerant of others.
I am nicer.
I am more patient.
Although I have always appreciated the little things in life, I think that I am one of the lucky ones that actually "get" what it means to stop and smell the roses. There have been days where the ONLY things I did have (because of my limitations), are the little things.
I am healthy, despite my woozy head.
I have learned to love myself just the way I am.
I have learned who really cares about me.
I know I am a strong person.
I am a fighter.
I can allow myself to freak out without getting down on myself for it.
I know that good days follow bad ones.
My trials allow me to support others.

You will find your own list, too.

xo

 
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