New Member Question- TV Anchor on Topamax

First. Simply put, thank you. Your documented experiences and words of hope are single-handedly getting me through this.

I’m only 24. I’ve experienced vertigo on and off for the last year. In the last three months, it’s gone from bad to worse. After going to six specialists and undergoing the gammet of tests (you know the ones–vestibular, cardiovascular, audiology, neuro MRI, etc.), there wasn’t one doctor who’d brought up the possibility of MAV. All the tests kept coming back normal and there seemed to be no answers. Here’s my list of symptoms: PERSISTENT rocking sensation especially when still, worsened by bright/flourescent lights (restaurants are bad for me), occasional migraines/auras, brain spasm-like feeling. Does this sound like MAV to all of you? I’m so curious to know!!

I work as a television anchor for morning news and I’m finding it virtually impossible to get through the 2 hour show. For someone with visual vestibular sensitivity, imagine throwing in consistant bright lights, tracking a teleprompeter and sitting up with no arm support!! Does sitting up straight for pronlonged periods heighten any of your diziness?? I’ve worked so hard to get to this point and now I’m terrified I’m going to have to give it all up because my body just can’t take it anymore. I should mention I have a VERY weird sleep schedule. I get to work at 3:30 am (I know…) so lack of sleep is another contributing factor.

My neurolgoist has never heard of MAV. He did, however, put me on Topamax, aka “Dopamax,” about two weeks ago. Yes, I’ve noticed the brain haze-- I pronounced New Hampshire as “New Hamster” on the air yesterday :). Other than that, side effects appear liveable. I’m only on 25mg and he says we’re going to step it up to 50mg end of this week. I haven’t noticed the dizziness subside yet but I wanted to ask about your stories on Topamax how long it’s taken you to see results. Did it help with the diziness directly? Only thing I’ve noticed disappear is the occasional migraine aura.

Also…desperate for a knowledgable doc who knows MAV. Any good refereals? I guess I’m feeling the pressure to get answers quickly here before I back out of a position I know I might never be able to get back. Thank you, in advance, to any of you who take time to respond! You’re all courageous people and remember, this is making us stronger, more vibrant people with a greater appreciation for life’s little blessings.

We’re in it together…
BradyLady

First of all welcome to the site. There are many people here who can tell you their experience with Topamax both the good and bad.

I would think it would help you to see someone who is familiar with Mav. Where are you located maybe someone could give you the name of one of the doctors who specializes in this disease that you might want to consider seeing.

I find the sleep issue is very important in my management of the disease. I do not know what you can do to help that part of your situation but it seems to help people here to manage the disease.

I also have seen success with diet modification , while others have not seen as much success . It is not an easy road but with all of us supporting and working together and sharing our success helps.

Who knows you may be in a unique position to help get the word out about the disease and how it effects people and what works and what does not work to address this issue.

Don’t give up on your dreams , just get the right help and one day you will hopefully be back to living a normal life.

Timeless,

Thanks so much for your quick response :). I work in Salt Lake City, so that’s where I’d welcome referals. Do you have similar symptoms to the ones I listed?

As for your diet modification, what do you recommend? I’m willing to try anything!

You’re so right about getting the word out. I’ve already started doing research on a big piece I want to run come next ratings-- clearly there’s a huge miseducation about MAV! I just hope some of Salt Lake’s doctors will tune in :).

Thanks also-- for your closing quote.

BradyLady,

That sounds like MAV to me. IT seems like there is a variety of symptoms that fall under MAV, and individuals has a different variant of these symptoms. For me, it’s disequilibrium (my worst symptoms), brain fog, fatigue, nausea at times, and many other strange sxs. I also have a hx of migraines, which you do not need to have. I wish you a lot of luck. Topamax is supposed to be a good drug. i haven’t tried that yet. I live in NY and have been to many doctors in the East Coast. Many doctors, even neurologists, are not at all familiar with MAV. They say that vestibular symptoms have to be episodic with migraine but that is not true at all. i’ve suffered for 2 years. There seems to be a lot of praise on this site about a Dr. Hain in Chicago. He might be the next doctor I go see. Good luck. I know what it is like to have a job that you love and not want to lose it. I am a clinical psychologist and had to take disability from a job I love. That’s hope that your treatment works and you do not have to be ill for long.

MAVLisa-

Thanks so much for writing! My neurologist initially said the same-- that he “didn’t know if migraine meds would do the trick because I wasn’t having headaches at the same time as my vertigo episodes.” Clearly, anyone with MAV knows this is not the case!! I’ll keep you updated on the progress of my Topomax. Let me know if Dr.Hain helps. I think I read that you can even pay for “phone visits” with him. Good luck to you too!

Does anyone notice vertigo gets worse when they sit up sill and straight in a chair with no arms and no room for slouching? Especially with bright lights-- like at a restaurant type setting?

Brady,

Do you feel better when you are in a car or in motion? Did you travel before the rocking started? From my personal reading it seems that MAV and something called Mal de Debarquement syndrome are hard to differentiate and may have some of the same characteristics. But then again, there seem to be many things with the same symptoms it’s getting a diagnosis that is hard. I’ve looked at the MdDS, http://www.mddsfoundation.org, site and they do have a list of doctors but don’t know if they show any in your area that might be helpful.

It’s been hard to get a straight diagnosis from anyone. The one thing that I don’t like about Dr. Hain’s website is that he doesn’t really change anything when he updates things.

I wish you well.
Sally

Sally-

I’m completely open to learning about anything and everything. I want to make sure I’m correctly diagnosed so I can go about an accurate treatment. Mal de Debarquement is something no doctor, ENT’s included, ever mentioned. I’ve never been on a cruise but I fly by plane frequenly. I will say I don’t notice any vertigo symptoms when I’m in a car, only when still. Do you think that’s revealing to my condition? How then would we explain the sensitivity to light/tracking as dizzy instigators?

Thanks Sally!!

I have MAV and usually feel my best when driving. I am not dizzy and have less brain fog. I do, however, sometimes get car sick when I’m a passenger

— Begin quote from "BradyLady"

Timeless,

Thanks so much for your quick response :). I work in Salt Lake City, so that’s where I’d welcome referals. Do you have similar symptoms to the ones I listed?

As for your diet modification, what do you recommend? I’m willing to try anything!

You’re so right about getting the word out. I’ve already started doing research on a big piece I want to run come next ratings-- clearly there’s a huge miseducation about MAV! I just hope some of Salt Lake’s doctors will tune in :).

Thanks also-- for your closing quote.

— End quote

I will find the migraine diet pdf I was given, it is a pretty long list but it has helped me.

npr.org/programs/morning/fea … ggers2.pdf

My issues started many years ago with just the headache part of which I do not have very much anymore (BTW I have one today) which I have not had in a very long time so I am trying to figure out what triggered it. I have been outside more than normal and it has been very sunny and things are starting to bloom which may have been the trigger.

I am very sensitive to lights. I keep the lights in my house very low and can not tolerate the fluorescent at all. When I was working I had them unplugged above my work area. I am also very sensitive to smells , perfume, chemicals any kind of scents.

I had the rocking sensation for months and it has started to ease with time. When you say brain spasm-feeling , does it feel sorta of like a wave sensation in your head that is what mine feels like. There are days when my wave like sensation is worse for me it is when sitting still, I have to put something behind my neck and driving seems to make me feel better than anything but riding as a passenger is not good for me.

Do you headache at all with yours, some people do but it is not always present with MAV.

Here are what has helped me .

Going to bed at the same time every night and getting at least 6to 7 hours sleep.

Eating and following the diet. I can not eat large meals , many smalls one throughout the day.

Staying on pretty strict schedule, every day.

Moving around instead of sitting still. But I can not wear heels anymore as that seems to throw me off.

I have not found a medication for myself yet as I am very med sensitive, but plenty of people here have found ones that have worked for them. I only take a very small dosage of Valium in the evening .25mg. It has helped with the anxiety that comes with this disease for many of us.

Many here take a Vitamin or some supplements, I think different ones work for different people. I take Vitamin D and magnesium.

Another thing you may want to do is have them check your Vitamin D level many have said theirs was very low, as was mine when all of this started.

Many wear sunglasses to keep the glare from the computers and lights in their offices, I guess that might not be an option for you…being in front of the camera everyday. :smiley: Of course you might start a new trend…

Don;t give up, keep the faith and we will together get through this one way or another. This is great group for support!

Welcome aboard BradyLady. I do think it sounds like MAV. The name alone is a bit of a misnomer - many don’t have headache at all but have a history of classic migraine (that is me). I would recommend that you consider a phone consult with Dr. Hain if you haven’t found someone in Salt Lake that has some familiarity with this disease. I ended up seeing someone locally and doing the phone consult. His website is great and has a very good list of medications that you may be able to take to your local doctor. I continue to struggle myself with very bad days and better ones and I am on my second medication try but this is a great board and there is much support here. Good luck. Ben

I do not know how the lights would be a trigger, I just read that lights could be a MAV and MdDS symptom. Wish I could be of more help, it seems that MAV and MdDS have many similar symptoms. I’m not sure how mine started except that it was an abrupt feeling of the street hitting me in the face while running. My history does include migraine and many triggers such as perfume and MSG.

Sally

— Begin quote from "BradyLady"

MAVLisa-

Thanks so much for writing! My neurologist initially said the same-- that he “didn’t know if migraine meds would do the trick because I wasn’t having headaches at the same time as my vertigo episodes.” Clearly, anyone with MAV knows this is not the case!! I’ll keep you updated on the progress of my Topomax. Let me know if Dr.Hain helps. I think I read that you can even pay for “phone visits” with him. Good luck to you too!

Does anyone notice vertigo gets worse when they sit up sill and straight in a chair with no arms and no room for slouching? Especially with bright lights-- like at a restaurant type setting?

— End quote

dizziness-and-balance.com/pr … h2007b.pdf

Kind of eye opening when you sit down and fill it out. Very thorough…more comprehensive than most questionnaires out there. Puts a lot in perspective. Even if you don’t end up seeing Dr. Hain, it’s well worth the time to fill it out. Gave me a deeper understanding compared to my previous docs…some of whom were actually good.

— Begin quote from "Timeless"

— Begin quote from "BradyLady"

I am very sensitive to lights. I keep the lights in my house very low and can not tolerate the fluorescent at all. When I was working I had them unplugged above my work area. I am also very sensitive to smells , perfume, chemicals any kind of scents.

I had the rocking sensation for months and it has started to ease with time. When you say brain spasm-feeling , does it feel sorta of like a wave sensation in your head that is what mine feels like. There are days when my wave like sensation is worse for me it is when sitting still, I have to put something behind my neck and driving seems to make me feel better than anything but riding as a passenger is not good for me.

Do you headache at all with yours, some people do but it is not always present with MAV.

Here are what has helped me .

Moving around instead of sitting still. But I can not wear heels anymore as that seems to throw me off.

Many wear sunglasses to keep the glare from the computers and lights in their offices, I guess that might not be an option for you…being in front of the camera everyday. :smiley: Of course you might start a new trend…

Don;t give up, keep the faith and we will together get through this one way or another. This is great group for support!

— End quote

— End quote

TImeless-

Wow. Just for emphasis, wow. Thank you so very, very much for taking so much time to outline what’s helped you. What an angel you are to share.

What I find so incredible with some of the tips you shared is how many of them I’ve come to adopt as habits of my own when it comes to compensating with our dear rocking senation. Like the use of sun glasses, moving instead of standing still, dulling lights— it’s hearing these kind of things that makes me almost 100 percent positive I’ve come to the right forum and I at least now know what condition I’m facing!

Slowly, I’m going to start isolating diet to see what exacerbates the diziness/migraines. I have a history of migraines with the females in my family–mother/aunts. I would get them very occasionally but when I did, they were lights out dehabilitating. The worse this vertigo’s been, I’ve noticed they’ve creeped back into the picture. As for the brain-spasm feeling-- yes, a wave sensation exactly! I can even pinpoint the place. It’s like a line drawn between my ears on the back of my head. Have you noticed it’s worse when you lay down? I also get a weird tingling sensation at the top of my head from time to time? It was little things like this that reaffirmed it was neurological not vestibular during all of my early tests with the ENT.

I can’t thank you enough for sharing and look forward to being in touch more! You’re the best…

— Begin quote from "benh"

Welcome aboard BradyLady. I do think it sounds like MAV. The name alone is a bit of a misnomer - many don’t have headache at all but have a history of classic migraine (that is me). I would recommend that you consider a phone consult with Dr. Hain if you haven’t found someone in Salt Lake that has some familiarity with this disease. I ended up seeing someone locally and doing the phone consult. His website is great and has a very good list of medications that you may be able to take to your local doctor. I continue to struggle myself with very bad days and better ones and I am on my second medication try but this is a great board and there is much support here. Good luck. Ben

— End quote

Ben!

Thanks for writing. The more and more I hear from all you kind people, the more I’m starting to think it’s MAV myself. I am going to call Dr. Hain tomorrow to see if I can set up a phone consult. Question for you. Did he book you out a ways? I’m glad to see you do also have better days! What medication did he recommend you try first? Ever tried topomax? How’s the second one working? Thanks for the words of encoruagment! Look forward to hearing your progress Ben!

— Begin quote from "Sally"

I do not know how the lights would be a trigger, I just read that lights could be a MAV and MdDS symptom. Wish I could be of more help, it seems that MAV and MdDS have many similar symptoms. I’m not sure how mine started except that it was an abrupt feeling of the street hitting me in the face while running. My history does include migraine and many triggers such as perfume and MSG.

Sally

— End quote

Sally-

You’re right. I’ve been reading up on the similarities between MdDS and MAV…remarkable! Virtually impossible to distinguish symptoms and what exacerabates them but wouldn’t you know the treatment is totally different! From the little I’ve read, it seems MAV has a more conventional drug (migraine prophelactic) treatment whereas they expect you to take the more “sit it out and wait” approach with MdDS.

You bring up an interesting point with vertigo. You say you had a feeling the street was moving (how awful, so sorry-- by the way!) You see, with my vertigo-- it’s more I feel I’m rocking, not my surroundings. I’d be curious to know if all you other MAV-sufferers are self-rockers or room-rockers, if that makes sense?

— Begin quote from "MSDXD"

— Begin quote from "BradyLady"

MAVLisa-

Kind of eye opening when you sit down and fill it out. Very thorough…more comprehensive than most questionnaires out there. Puts a lot in perspective. Even if you don’t end up seeing Dr. Hain, it’s well worth the time to fill it out. Gave me a deeper understanding compared to my previous docs…some of whom were actually good.

— End quote

— End quote

MSDXD-

Understanding your symptoms really is so important in trying to get doctors to lead you on the right path! Thank you so much for the link! I’m going to fill this out and then call Dr. Hain for the phone consult. Do you see Dr. Hain? What do you think? Has he helped you?

To everyone who has replied:

The start of today proved really difficult. I didn’t feel good and I was letting all this get the best of me. I decided to become a member and posted my first comment this morning. Now, the sun is setting and Ihave a huge smile on my face in response to your 14 comments. I guess it’s just knowing there are perfect strangers thousands of miles away who cared to take time out of their day to help another perfect stranger. What a wondeful reassuring feeling in mankind. Thank you.

A Really Grateful,
BradyLady

— Begin quote from "BradyLady"

— Begin quote from "Timeless"

— Begin quote from "BradyLady"

I am very sensitive to lights. I keep the lights in my house very low and can not tolerate the fluorescent at all. When I was working I had them unplugged above my work area. I am also very sensitive to smells , perfume, chemicals any kind of scents.

I had the rocking sensation for months and it has started to ease with time. When you say brain spasm-feeling , does it feel sorta of like a wave sensation in your head that is what mine feels like. There are days when my wave like sensation is worse for me it is when sitting still, I have to put something behind my neck and driving seems to make me feel better than anything but riding as a passenger is not good for me.

Do you headache at all with yours, some people do but it is not always present with MAV.

Here are what has helped me .

Moving around instead of sitting still. But I can not wear heels anymore as that seems to throw me off.

Many wear sunglasses to keep the glare from the computers and lights in their offices, I guess that might not be an option for you…being in front of the camera everyday. :smiley: Of course you might start a new trend…

Don;t give up, keep the faith and we will together get through this one way or another. This is great group for support!

— End quote

— End quote

TImeless-

Wow. Just for emphasis, wow. Thank you so very, very much for taking so much time to outline what’s helped you. What an angel you are to share.

What I find so incredible with some of the tips you shared is how many of them I’ve come to adopt as habits of my own when it comes to compensating with our dear rocking senation. Like the use of sun glasses, moving instead of standing still, dulling lights— it’s hearing these kind of things that makes me almost 100 percent positive I’ve come to the right forum and I at least now know what condition I’m facing!

Slowly, I’m going to start isolating diet to see what exacerbates the diziness/migraines. I have a history of migraines with the females in my family–mother/aunts. I would get them very occasionally but when I did, they were lights out dehabilitating. The worse this vertigo’s been, I’ve noticed they’ve creeped back into the picture. As for the brain-spasm feeling-- yes, a wave sensation exactly! I can even pinpoint the place. It’s like a line drawn between my ears on the back of my head. Have you noticed it’s worse when you lay down? I also get a weird tingling sensation at the top of my head from time to time? It was little things like this that reaffirmed it was neurological not vestibular during all of my early tests with the ENT.

I can’t thank you enough for sharing and look forward to being in touch more! You’re the best…

— End quote

My family has had migraines, my dad and my maternal grandmother both suffered for years.

Yes it is worse when I lay down and I have to sleep with my head elevated to keep the “waves” from being so bad. Yes I also get that tingling sensation .

Let me ask you do you feel the sensation when you eat , like while you are eating not after you have eaten something? This is a very strange symptom I have that I have seen only one other person mention. And yes all my test have come back negative which is hard when you know your body and know there is something wrong.

I feel so bad for you as you are so young to be going through all of this. You are so young and you have your whole life ahead of you, be vigilante in looking for information but at the same time do not drive yourself crazy with that part of it either.

The worse part of me was not knowing and wondering what in the world is wrong with me. It is very scary at times and learning to cope with it is half the battle.

Another thing is I took all the new kind of energy saving light bulbs out of my house as they are fluorescent and give off the same flickers as the larger ones in offices.

I also sleep with a fan by my bed which seems to help me get to sleep as I do better in a cool environment as opposed to warmer ones. Although I used to love the sun and outdoors I have just found that does not work well for me with this condition.

Keep me updated and I will do the same.

— Begin quote from "BradyLady"

— Begin quote from "MSDXD"

— Begin quote from "BradyLady"

MAVLisa-

Kind of eye opening when you sit down and fill it out. Very thorough…more comprehensive than most questionnaires out there. Puts a lot in perspective. Even if you don’t end up seeing Dr. Hain, it’s well worth the time to fill it out. Gave me a deeper understanding compared to my previous docs…some of whom were actually good.

— End quote

— End quote

MSDXD-

Understanding your symptoms really is so important in trying to get doctors to lead you on the right path! Thank you so much for the link! I’m going to fill this out and then call Dr. Hain for the phone consult. Do you see Dr. Hain? What do you think? Has he helped you?

— End quote

Used to be a patient of Dr. Hain. I see another doc now. He was helpful to a certain extent…he identified migraine as a major culprit, whereas docs prior to him—over a 2 year period—couldn’t. Very thorough…worth a consult for sure. Very important to get all of your medical records ready first, so he can study them before a consult. He may not have ALL of the answers, but he’s probably more capable than most doctors at getting you more answers.

When and if you have the time, visit his website(s):

dizziness-and-balance.com/index.html

tchain.com/default.htm

Tons of information…

Hey BradyLady,

— Begin quote from "BradyLady"

I guess it’s just knowing there are perfect strangers thousands of miles away who cared to take time out of their day to help another perfect stranger. What a wondeful reassuring feeling in mankind. Thank you.

— End quote

Really glad you found this forum! I can only imagine how hard it is dragging yourself in to work at the crack of dawn, sitting in front of bright lights, and trying to read a teleprompter all the while with a dizzy, migrainous head.

I pronounced New Hampshire as “New Hamster”.

That’s funny but for the wrong reasons I know. It seems you need to give Topamax about 3-4 months to know if it’ll kill this thing as long as the side effects are bearable. Have you tried taking the odd benzo if the dizziness is too much? They’re pretty effective used sparingly. I always have 2.5 mg of valium nearby in case I’m having an off day and computer screens give me a hard time. It never makes me tired and kills the dizziness.

Best … Scott 8)