Just diagnosed and wanting to connect with others

Specific Illnesses & Conditions VM/MAV
1

Hello all -

I am new to this board as I only a week ago was diagnosed with MAV. Before that time I had, like all of you, been on a roller coaster of wrong diagnoses and utter confusion about what my life was becoming. I finally was fed up the the fractionalized medical system where no doctor could look beyond their spelialty and put the pieces together, so went to Chicago to see the Dr. Hain the wonderful “dizzy doctor” and ended up seeing his understugy Dr. Cherchi who I think is the smartest, most humble doctor I have ever met. After looking at my many pages of medical records, and spending an hour and ten minutes with me and my husband, he made his diagnosis. Dr. Hain came in as well and confirmed the diagnosis. I"m still only beginning to understand what this is that has turned my life upside down.

Last Sept. 07 i experienced what I thought was my normal reaction to every allergy season - dizziness. I, after all, live in Nashville Tn which is one of the worst places in the country for allergies. My mom has allergies and I’d been tested 9 years ago and told that I had them too. I just thought that my reaction manifested itself in this odd way. Only this time, the dizziness stayed and has pretty much been consistent for a year now. I’ve had periods that are more managable than others. Right now I’m in a worse one, but am about to start Topamax. I am afraid of this drug as I am very sensitive to side effects and I know that Topamax has many. I have ADHD and am already someone who gets confused and distracted easily, so it worries me. I also do not want to feel druggds, as I feel that way all the time already. I couldn’t tolerate much worse.

I just want to believe from fellow suffers that there is hope even if the Topamax doesn’t work. It’s okay with me if I don’t feel perfect, I just want to be functional. Like several of you who’s post i have read, I’m an athlete who has always been addicted to exercise and I also have two small children that I adore. I used to be such a fun and spontanious mom. I’m not so much anymore. I am so tired all the time it’s just crazy. We would have tried for another child if this hadn’t happened. Now I’m 39 and I cannot imagine having another child while suffering from this illness. So now i just want to be a good mother to the two wonderful kids I have.

Thanks for your time and I"d love to hear back.

Molly

2

Molly,

I’m sorry that this MAV monster has stollen much of your life and dreams, as it has the rest of us. But if you’re looking for support and information, you sure have come to the right place.

Dr. Hain is also my doctor, although I see him by phone consult, so i get prescriptions from him directly. I wonder if his associate prescribes the same way he does, if so, there are **practically ** no worries regarding Topamax. Here were Hain’s orders to me:

start with 25 mg and titrate up once a week, 25 mg.
if there is any tingling, stay at that dose until it stops, then continue your titration.
if there are any cognitive SEs go down to your last dose until it stops and then continue your titration.
(actually i started with 1/4 of a pill with each titration, but quickly moved up to 1/2 of a pill with each titration - I’m sensitive and LOVE the go slow/stay low mind set)
And he stops you at 100mg

With this method, there is nothing to be afraid of with Topamax, unless you have some sort of sensitivity to it (a board member recently had a **very bad **experience with one dose, but it did go away) I know someone who took 1/4 pill and has had GREAT improvement, in fact her dizziness is GONE but she had indescrible (or would take too long to describe) SEs along the way. If she had taken the full 25 mg, well, i don’t think it would have gone too well, but she is a very unique person.

I’m curious to know if Hain’s associate prescribes in a similar manner.

If Topamax doesn’t work Hain has other drugs that he uses. His next favorite drug is Effexor. If you also shudder at this drug because of horror stories you have heard, Hain has a method of using it which keeps the risks down. As you can see with Topamax, he does not believe more is better. He believes to go slow and stay low. So with Effexor:

he starts you at 1/3 capsules for one week
2/3 capsules for one week
then one full capsule (37.5 mg) for one full month, where he assesses you and decides whether you need to go to 75, which he does not like to do because you then risk that nasty withdrawal syndrome. he even hopes for a “cure” during the first week of titration, in which case he would have you taking 1/3 capsule for the rest of your life and risk no withdrawal syndrome if you need to get off.

I haven’t heard anybody else prescribe this way, including Johns Hopkins, who gives 37.5 every week until you reach 225 mg

Hain also uses verapamil and propranolol, depending on your contraindications, and TCAs when necessary, but 80% of his practice are Topamax and Effexor.

Before I met up with Hain, I was taking Neurontin, which took care of all my aura, Zoloft, which did not help my MAV, but which gave me energy, and Klonopin which helped/helps me enormously in taking the dizzines down.

Molly, everyone is different. I had only the mildest SEs with Topamax. Others get hit cognitively pretty quickly, but they are taking higher doses than I took. Before I got his with this monster i wouldn’t even take aspirin. The first time Topamax was offered to me, i broke out in a sweat. After six months of other kinds of treatment, with partial success, i was begging for Topamax. We are in dire straits. I will do or take anything to get my life back.

Molly, something else, a year ago i was bedridden, i could barely get to the bathroom. I was getting worse by the week, and by a LOT. I thought I would die in that bed. Today I can walk 3+ miles, up steep hills and then come home and run a business and cook and clean. I spent NO time in bed. I can even drive to my doctor appts (a year ago i had to load up with 30 mg of Valium and lie back in the seat, walk in drugged). This freakin’ monster can be treated. One…day…at…a…time.

Julie

P.S. Did Dr. Hain tell you about us or did you happen upon us by chance?

3

Hi Julie -

Thanks so much for getting back with me. I so appreciate it. I laugh all the time and say “I never even knew that chronic lightheadedness was a condition from which people suffered. I always felt thankful for my overall good health, but damn, I don’t think I ever said, thank you for my balance.” When I found this site, i couldn’t believe there are others like me out there who feel the same way. I will explain what is going on to a friend and they will say, “Yeah, I get dizzy when I’ve been bent over and then stand up.” And I think to myself, “Yes, that’s what it’s like, but try feeling like that all the time.” It’s a crazy thing.

Dr. Cherchi prescribed the Topamax in this way:

Take 25mg every night the first week, and then one in the morning and one at night the next week. I’m wondering if that won’t kick me up to fast. I ALWAYS need low doses of medications. Are you telling me that you can split the pills? Mine do not have a perforation which made me think that I couldn’t split them. I would feel better starting even slower than Dr. Cherchi prescribed given my sensitive history. Although I’m looking at the bottle now and it has Dr. Hain as the prescriber.

I cannot believe that you were bedridden last year. That is helpful to know that you are doing so much better. How long have you had this? And are there many of us? I haven’t met anyone else who has this although there is one guy in Colorado that I have talked to that has been dizzy for 18 months and doesn’t know why. What do you take now and what do you think has helped you not be so tired anymore? And one other question, have you had lasik eye surgery. The guy I talked to in CO had Lasik and I have too. I also have heard of two other people with dizziness, both of whom have had lasik. I just wondered if there is a connection.

Thanks you for your hopeful words, particularily ONE…DAY…AT…A…TIME… I need to work on that.

Best,

Molly

No, Dr. Hain didn’t give me this site. I found it last night and was amazed at all the stories. Although I can’t really be on the computer much right now. It kills my eyes. Any advice on that?

4

Molly

Welcome to the site. I have been ill for a similiar time as you so know exactly what you are going through!

You have done exactly the right thing - you have gone to see the best Dr possible (Hain) so you have every chance of a full recovery. I live the UK but know Hain does international consultations so I may go and get treatment under him myself if I need to in the future!

Becky

PS. My eyes hurt when at the PC too. Its like a burning sensation. I don’t know of any remedy except limit use of the computer to shorter periods of time.

5

Hi Molly, and Welcome :slight_smile:
Julie was handling the welcome-here part so well, I figured I couldn’t do much more, so I stayed quiet for a while. :smiley:

— Begin quote from “Molly”

No, Dr. Hain didn’t give me this site. I found it last night and was amazed at all the stories. Although I can’t really be on the computer much right now. It kills my eyes. Any advice on that?

— End quote

I might have some, although it depends on a bunch of things, mostly monitor type.
If you have a CRT monitor (the older kind, which is at least a foot deep), make sure the refresh rate is at least 75Hz (preferably 85 or more); if required, lower the resolution until it’s capable of 75-85Hz at that setting. Low refreshrate totally kills me on such monitors, 60Hz ( = flickering!) will cause headache and nausea within minutes, which doesn’t pass in a few hours. Uggh.

If you have a TFT/LCD monitor (the new, flat kind) the advice is instead to use the maximum resolution possible… because they work completely different, and only look good at a single resolution; lower ones will make everything blurred. Not good for the eyes. Refresh rate doesn’t matter whatsoever on these, because they simply cannot flicker.

Finally, if you’re as sensitive as me, make sure that both the computer table and the monitor are as stable as possible. My table stands firmly against the wall, doesn’t move at all; plus, the screen leans back to the wall as well (I use a laptop), so the screen is also perfectly stable.
Just yesterday I accidently learned what happens if I don’t do this… the table had “come loose” and wobbled an inch every time I moved the mouse. Took a while until I realized, but I felt like crap for the rest of the day afterwards!

Hope this helps :slight_smile:
All of it is absolutely essential to me, couldn’t sit here for five minutes without it, and now I manage all day.

6

Hi Molly,

I, like you stumbled onto this site - thank God. i actually found it through Wikipedia while looking up visual snow. What a crazy thing that is.

it really is impossible to describe this dizziness sensation, or what we all jam pack into the word “dizzy” to other people. and mostly what i get is misunderstanding.

My step daughter-in-law responded like this: “Oh, i spend 80% of my life dizzy” Well i know this was hyperbole. This woman is hardly as dizzy as I am 80% of her life. She’s talking the kind of dizziness you get when you stand up too fast. or when you have allergies, which she does. that pales in comparison to MAV. It felt like a brush-off. So what the F am i doing lying in bed dizzy while she’s taking care of two kids, running around, vacationing. I guess it’s because I’m lazy.

And then there was my husband! He’s a psychologist. And for a very long time he kept comparing me to a patient of his who had dizzy spells! I kept telling him these are NOT SPELLS! And they so and so’s spells are hardly as bad as this. I am lying in bed while she’s having a life. his point was that it was psychosomatic which made me all the more angry. He finally got it when he saw the ABC video on MDD. Have you seen that? If not, i can email it to you. Show it to people who don’t understand. Believe me, they will get it. Everyone i have shown it to has finally quit saying stupid things.

It sounds like Cherchi is prescribing the same way as Hain, dosage-wise, but is he telling you to watch for tingling and cognitive SEs? and what to do if they happen?

Because i knew i was sensitive i cut those pills. They cut really well in a pill cutter you can pick up in any drug store or order from drugstore.com

I’ve had lurking symptoms for at least 15 years, a little rocking. then i had a small crash about 10 years ago, but i could still
function, dancing, driving, vacationing. Then i had a horrendous crash which left me bedridden, a few years ago.

Take a look at the first thread on this forum “POST YOUR STORY HERE” and you will see a small sample of how many people must have this horrible ailment. When i first read the stories they broke my heard. Now that i know these people i’m not sure i could bare to read them again. I used to say to my husband last year that I never knew it was possible to suffer this much, well it is, and more. I knew once i hit this board that not only was this my illness, but there were those out there in even worse shape. :cry:

Or to answer your question another way, Johns Hopkins claims they have seen tens of thousands of patients with MAV (i’m not sure in what length of time, but MAV was first recognized in 1992) Hain quoted a very high number also, like 10,000.

The eye question is a curious one. We were just talking in a recent thread about the issue of contacts. You’ll find it under a thread titled “for you contact wearers” I wonder if it sent me into my own final monstrous crash.

Looks like you’ve joined the club Molly, welcome, again, i’m sure others will be responding soon,

Julie

7

Thanks so much to you all for your welcome. I do think the hardest thing about this illness is the isolation that is felt. I mean, the closest and dearest people in my life keep asking me if I"m taking my Xanax - which I started after the worst episode I’ve had around the 4th of July at the North American Irish Dance championships - my husband thought our daughters would love seeing it. It was the first time I understood panic attacks because I literally could not see and I was is a sea of thousands of people many of whom were wearing sequined costumes. It was like an ant on acid in an ant farm. I thought my head was going to explode from all the visual stimuli that my eyes just could not process. My eyes feel too small for the world that is round me.

Thank you Tranquility for your advice about the computer. I’ll have my husband adjust for me. I’ve wondered before about a projector on the wall. When I’m really having a hard time, HD TV kills me. My friends have a projector on the wall instead of a screen and that doesn’t hurt my eyes at all.

I have a few questions.

  1. Has everyone here stopped drinking coffee? I have one cup a day because after stopping it for two weeks, i noticed no improvement. I’ve made many diet changes, although I still eat nuts and the only cheese I eat is cottage cheese. I just feel like my triggers are visual. I did this major food sensitivity test, and cut out all the things i’m sensitive to. But I still do have my coffee.

  2. Does everyone feel a reduced ability to think clearly and experience brain fog? Are most people fatigued? And does anyone know why this is?

  3. And how about success with alternative treatments? I"ve gone to accupuncturists, chiros, and cranial sacral therapists. Has anyone here had improvements with those treatments?

Thanks again for everything. I am glad I’ve found a group of folks who understand.

Molly

8

Molly,

Just wanted to comment that there is hope even if the topomac doesn’t work. It did’t work for me do to one side effect, and I had to try two more medications before we found one that worked with minimal side effects. Sometimes we have to play guinea pig and try a few med before we get one that works. Dr. Haines therapy seems to work with little side effects from what the ladies who have seen him have posted here, so I would keep my hopes up.

9

— Begin quote from “Molly”

I have a few questions.

  1. Does everyone feel a reduced ability to think clearly and experience brain fog? Are most people fatigued? And does anyone know why this is?

— End quote

When I was at my worse. this was one my most disabling symptoms. I work in an engineering feild and need to be able to think as part of my job. Let’s see now 2 + 2 = …, oh I know that one, …, 4! Yes!, but why was I adding 2+2?

— Begin quote from “Molly”

  1. And how about success with alternative treatments? I"ve gone to accupuncturists, chiros, and cranial sacral therapists. Has anyone here had improvements with those treatments?

— End quote

I’ve thought about accupunturists, I have tried and still use chiros, I also use stress reduction, changes to my diet, and a strict sleep schedule. Each one helps a little and they all add up to helping a noticiable amount.

10

Hi Molly-

Welcome. Glad you found us, although, I am sorry about the circumstances.

I had to stop drinking coffee way back in the beginning of all of this (It was tough - I was a coffee-fiend. I won’t even tell you how much coffee I used to drink, you wouldn’t believe it). I have tried a few times since then to drink a cup, and it would just set me off, literally spinning. However, just in the past month or so, I bought some organic stuff at the healthfood store, and I’m able to drink a cup now. I can’t tell you why (I don’t think its because its organic). I have absolutely no idea why its not affecting me right now, but I’m holding my breath, because I love a good cup of coffee in the morning. But, if and when it gets to me, it will be out the door in a heartbeat, but for the moment I’m enjoying it.

You’ll hear alot of us complain about the brainfog and fatigue. Some of it is probably caused by meds (I take propanolol and it definitely makes me tired), however, in my case, I think a good bit of it is MAV caused. (I’ve heard some people say that because our balance systems are so out of whack, our brains work overtime to compensate). I’m sure someone here has a better answer for you, but I can definitely relate to your concerns.

I didn’t have any luck with a chiropractor. Again, I went way back in the beginning of all of this, and I was a complete “nightmare” patient to him. I wouldn’t let him near my neck or head. I was completely freaked that he was going to do something that was going to send me into permanent spins (and this is coming from someone who’s had chiropractic nearly my whole life. Not anymore.)

Besides meds, avoiding MSG (its a major trigger for me) has been my biggest help. Everyone is different though, it seems to be all about finding out what works for you - the right combination.

You’ll get more support from the people on this board than you could ever imagine!!!

Kim

11

Hi Molly,
Welcome. I am a relative newcomer to this site too but it’s a life saver on the days when I really need lifting up.

I can really relate to your story and like you, I have always been athletic too. On same days, I feel really good and other days I get struck down with an episode and it is all I can do to get out of bed. VERY hard condition to live with. Epsecially with children. I have two teens and would really love to do the things with them that I know I would be doing if I didn’t have this debilitating condition.

Have you read the book 'Heal Your Headache"? By David Buchholz. You will get some really useful information there. I finally bought it recently and read it and it was like a million little light bulbs going off while I read. You don’t have to have headaches to benefit from its information. My primary complaint is the dizziness, brain fog and visual issues as well. So, I hear you.

12

Thanks again for all the comments.

Kim, I think your right about our brains working overtime to try and compensate. I’m not on drugs yet, and the brainfog and fatigue are a real problem for me now. I think that is why I sort of fear starting the Topamax. I’ve heard it call “stupimax” and God knows I don’t need to be more out of that.

Brain, how is your brain working now? How long were you a guinea pig? And are you working now in engineering?

Becky, do you have good people helping you in the U.K.?

Halfthere, thanks for the diet advice. What are your visual triggers? Mine are so varied, I can’t avoid them all. Sunglasses help sometimes and other times, it makes it worse. I think the worst for me is being in the house in one kind of light and then having a glare coming in the windows. Cloudy days are better for me. I either have to be in a dark room, or I have to be outside with the sun overhead, making as few shadows as possible. When the sun is setting and the shadows are like plates of light and if I happen to be driving through them, I can feel my dizziness intensify. I thought in the early stages of this, that it was my vision, my lasik, something that could be corrected with glasses. Oh if it were that simple.

I have another question, and that is, are there some people who can never identify the trigger? I mean, I have headaches that I feel pretty sure are hormonal, but the dizziness just seems to be there all the time and directly related to nothing. There just seems to be no common denominator.

Thanks again everyone.

Molly

13

Molly,

I think brain fog and fatigue are part and parcel with MAV. Before treatment i was bedridden and was so foggy the world seemed surreal.

My understanding is that we are in some kind of a 24 hour migraine state, or migraine aura. When I had classic migraine, i got brain fog and fatigue, before, during and after, so why not now? Look at the ppt slides of Hain’s and see all the disruption that’s going on in the brain. It’s no wonder. Zoloft was my first preventative and helped a lot with the fatigue and the brain fog. unfortunately it did nothing for the dizziness and i’m off of it now to be replaced by Effexor. The other thing that helped my brain fog and fatigue was neurontin, which i’m still taking. i could feel it calm down my nervous system. not the way a benzo does, more like in my body. i could feel my body just calm down and pull together and not be so jittery and fatigued and foggy. and more of the aura went away. it all just happened at the same time. less aura, calmness in my body, less fatigue, less foggy. i wish i could explain it better. Our brains are over-excited. they are firing too much, or mis-firing, or something. that fatigues us. Like when you’re nervous, you feel tired in a nervous way. If you’ve had that experience you know what i’m talking about. okay, i’ll shut up now.

To your bolded question - my dizziness is 24/7. I wake up in the morning and it is there and it builds as the day goes on, always the same. the only way i was able to find any triggers was to follow the diet strictly for three months, which did NOT make me feel any better, until i started adding things back, and found that certain things made me feel worse. So i did find triggers, which i avoid like the plaque. But following the diet has not taken my dizziness away. Remember the movie Ground Hog Day with Bill Murray? Every day is the same.

Hope any of that babbling helps. Sorry, it’s late, i should probably just delete :slight_smile:

Julie

14

You made perfect sense to me. All of it. You weren’t rambling at all. Tell me this, you are on Topamax right? So are you still dizzy everyday? Is it to a lesser degree? And what about the Effexor? Are you on both of those? Do you have a lot of visual triggers as well?

Sorry to hit you with so many questions, but I really am interested in how people learn to live with this.

Thanks again -

Molly

15

Molly,

thanks, i’m glad i wasn’t talking around in circles too much.

I’m so much better than i was a year ago. the world was whipping so fast I was afraid to open my eyes. I had violent vertical bed drops and horizontal violent bed swings. The floor wasn’t just moving, it was so slippery that by the end of the day i literally couldn’t stand. I had to get my teeth brushed and washed up by 6 pm or it just wouldn’t happen. I was in bed all day except to go to the bathroom and make myself some food, which I would nibble on all day - shaking with every spoonful i brought to my mouth, i was so weak.

So now, with treatment i am left with this rocking, which worsens as the day goes on and keeps me pretty tied to the house. I can walk for an hour without taking much of a hit, and i can drive a little, but still require some Valium 10 to do it, and do take a bigger hit than walking because of the motion of the car. And when i go to bed at night I have a swimming/rolling sensation.

So i guess what I mean by 24/7 every day is the same is: i have no triggers. Whereever i’m at is where I’m at. If i do get some improvements with a new drug, that’s where i will be from then on, until the next drug i take. Does that make sense. no triggers.

When i was real bad noise was a momentary trigger. even the sound of my husband walking across the floor would send my head swinging from one side of the pillow to the other. You’d think somebody had slapped me across the face. Nothing triggers me now. I just get worse being up and around all day. I think if i were to stay down all day, i would probably have less rocking, but i’m not going to go back to bed for nothin’!

Neurontin took the aura away, made me less foggy and gave me energy - got me out of bed
Klonopin took a LOT of the dizziness away - got me out of the house, taking short walks, but i would have to go to bed to let the dizziness settle down
Topamax brought the dizziness down further AND put a lid on just how dizzy i would get. I am no longer constantly gauging my dizziness level so that i don’t cross that threshold of no return. I can walk as long and as fast as I feel capable of knowing that I won’t have to go to bed when i get home.

Hain approves of all three drugs and wants me to continue. They are all important to my recovery. Topamax has been great, but i can still feel when my next Klonopin dose is due.

Effexor hasn’t done a thing for me at 37.5 mg, but Hain will go as high as 75 mg. Carey goes as high as 225 mg. I’m at Topamax 100 which is where Hain likes to leave it, but he told me he would consider going higher since my response was so good and my SEs have been practically nill.

I hope all this helps. I know where you’re at. When I entered this forum I was trying to figure out what to take, what would make me well. I was so afraid of these meds, having heard so many horror stories.

I wish I could tell you not to be afraid, but I can’t. People do have bad reactions to these drugs. But if you start real slow - REAL SLOW, you can quit REAL FAST and it will go away.

Julie

16

Thanks Julie -

I was comforted my you advising the halfing of the dose. I think I will start with half of a 25 mg Topamax just to really ease into it. I take Trazadone for a sleep aid and most people have to take 50mg - I take at most, a quarter of that. My neurologist who had no idea what he was doing, prescribed Klonopine and I could at most take hald the dose he prescribed. I have taken a low does of Prozac for years for anxiety and have never reached “the theraputic dose.”

My fear comes from a time when I had post partum depression and insomnia and I was a guinea pig with all kinds of meds. I took neurotonin for sleep and I hated it. I took serequel for sleep and had a terrible time with that as well. So I just get scared with drugs.

But I’m going to try this Topamax and say a prayer.

I’m so sorry that you have had the true vertigo symptoms of spinning. The room has never spun for me (knock on wood) but I just constantly feel like I have just blown up a raft, or that I have a benedryl hangover. I feel like my eyes have been dilated and I’m out strolling around in the bright sunlight. But I cannot imagine the room spinning around.

Were you motion sick as a child? I was terribly.

Thanks again -

MOlly

17

Molly,

I don’t actually get true spinning vertigo, thank God. It was a whipping. Just a whipping, back and forth i guess, but not true spinning.

And i actually started at 1/4 of that 25 mg topamax. And if you are truly med sensitive, you might want to try 1/4 because i know two members on this forum who had strong reactions to 1/4 - one real good strong reaction and one bad. But the bad one was able to bale out immediately, it was with the first dose. But i will say a prayer. As I said, when I took my Topa, I’m in dire straits, I can’t live like this, I have to do something, here goes.

what dose Seroquel were you given? and what was the reaction? I considered it for awhile, but since i’ve weaned off of Zoloft and with my hefty dose of Klonopin, i’m finding that i’m falling to sleep without Ambien!!! Hip Hip Hooray - after seven years of Ambien use i’m just falling to sleep without it!!! (it’s the Klonopin, i’ve swapped one addictive sleep aide for another, but that’s better than having two!)

I do remember getting motion sickness during car rides as a child, but i thought that was normal, yes? so i’m not sure if i was outside the normal range or not. There were 11 of us and we all seemed to be getting car sick, but then again we’re all adults now and almost all of us have migraines, hmmmm

be well Molly,

Julie

18

— Begin quote from “Julie”

I do remember getting motion sickness during car rides as a child, but i thought that was normal, yes? so i’m not sure if i was outside the normal range or not. There were 11 of us and we all seemed to be getting car sick, but then again we’re all adults now and almost all of us have migraines, hmmmm

— End quote

Julie,

The nuerologist who diagnosed me told me this was one of those undocumented things that she has observed common with MAV’ers. Not only are we prone to motion sickness as children (most people never experience it the extent we do) but the motion sickness and migraines run in the family.

I know, when everyone you know around you (your family) experiences motionsickness, you just assume that everybody experiences it as well. I have at least three symptoms that I have experienced all of my life and becuase of that assumed that everyone else did too; frequent headaches, motion sickness, mild tinnitus, motion intolerance, positional related nauseau, and on and on. OK, I thought the list was only three, but apperantly it is longer with thought put into it. I remember once in elementary school doing a summersault race in gym class, and not only coud I not finish do to nausaeu, but I couldn’t hold a straight line, and I was stunned that the other kids could do it without batting an eye.

Brian

19

so Brian, what do YOU mean by motion intolerance?

20

— Begin quote from “Julie”

so Brian, what do YOU mean by motion intolerance?

— End quote

Several things, but mostly when I stop moving, things still feel like they are moving, or exagerated motion as in sitting a swivel rocker chair and being bumped by one of my kids feels more like the chair is about to be dumped over instead of a gentle rocking motion. Sometimes I don’t feel the motion at all, and I still call it part of my motion intolerance, but my body’s reaction is quite different from the exagerated motion, usually leaving me walking into things.