Getting my bearings

Until a few weeks ago, I thought migraines were headaches, with all these other associated symptoms – auras, photophobia, nausea, and the like. That’s what my grandmother had, and my daughter.

But at the end of September, my 15YO son had a bad cold, then got an ear ache and became dizzy. We took him to the pediatrician, who said he had labyrinthitis. But after a week or so, the cold was gone, but the dizziness was worse, so the pediatrician sent him to an ENT. The ENT said it had nothing to do with the inner ear. It was a coincidence that it started with the cold. She sent him to a neurologist.

And the neurologist diagnosed him with vertiginous migraine. He’s had it since September 28. He’s dizzy, with spells of vertigo. Word-finding difficulties. Visual weirdness. Clumsiness. An intermittent feeling sort of like numbness (only it’s not numb) in his right foot or right hand, and weakness on the right side when that happens. Brain fog. Fatigue. Mild headache, but nothing like what you think of when you talk about a migraine headache.

The doctor started him on propranolol. He’s already taking lamictal for an anxiety disorder, and the neurologist didn’t want to mess with that. She said it would take two weeks to a month for it to help. It’s been two weeks, and we’re not seeing any help yet.

He’s been out of school since this started. The plan is for him to start back an hour a day, and slowly build back up to a normal schedule, as symptoms improve and he feels like he can handle it.

We’ve also started an elimination diet. From what I could tell, reading online, gluten, processed meats, aged cheeses, and chocolate are often triggers for migraine, so we’ve cut out those foods to see if that will help this migraine attack get over with sooner.

I’d never heard of vertiginous migraine until this happened. And I had no idea that a migraine could last for months.

I’m worried, of course. I want my kid to feel better. But I don’t know enough yet to know what to do or how to help. I’d be grateful for any insight that y’all can offer!


Hi Mamabear,

Welcome to the board, really hope it helps you and your son to manage this condition.

Firstly can I just say well done for getting your son diagnosed with this so quickly. Many people struggle on for a long time and head down many blind alleys before even getting a MAV diagnosis and being able to start treatment,

Do have a good read through the MAV survival guide on this board, Scott has done a fantastic job of pulling together loads of relevant and practical information to help people that are first diagnosed with this, it covers going caffeine free, minimising painkiller use, exclusion diets etc, though you really do sound like you’re on the right track.

Secondly, a really important thing you can do for your son is to believe him (which you obviously do) and make sure he knows that. This is a tough condition to deal with generally, but feels worse sometimes because it’s so invisible. You look fine from the outside yet feel so unwell, and in a way that can be so vague and difficult to describe to others. People do look at you sometimes like you’re making it all up and that can be really hard.

I presume your ENT put him through a series of inner ear tests in order to determine that this definitely was not inner ear related? I only ask this because I’ve seen some pretty awful ENT’s in my time who think they can just look in your ear and tell you from that. If not, it may be worth finding a dizzy clinic who specialise in this kind of condition and can properly rule out any kind of inner ear problem. (I’m sure if you let us know where you are then someone on here would be able to advise you).

I personally believe that an acute inner ear problem such as Labyrinthitis can actually act as a trigger for the development of MAV in a person who carries the migraine gene. He may have had inflammation of his vestibular nerve initially as a result of the cold (labyrinthitis) which may have resolved spontaneously but triggered vestibular migraine.

As for the medication, any kind of anxiety will axacerbate the symptoms of MAV and so if his anxiety disorder is well controlled with the lamictal, then I can see why your neurologist would rather not change that at this point. Propranolol is a good first line drug for this condition so definitely one to try (and yes, you do need to give these drugs a chance to work which is immensely frustrating at times) however as you’ll see from this board there is no single answer for everyone and that many of us need to try multiple drugs before hitting on the one that works best for us, so try not to be too despondant if propranolol turns out not to be the miracle cure you’re hoping for (though of course I really hope it is!). Other alternatives include specific drugs that are also used for anxiety and depression, so there will be many more things he can be tried on if need be.

I think most of all you sound like you’re doing a great job. It’s a pretty frightening condition as when you’re in the middle of it it’s really hard to imagine that you’ll ever feel “normal” again. What you need most around you is someone who’s going to help you to find the answers you need from the professionals and to truly support you.

Sorry I can’t give you any quick fixes, but hang in there and we’ll help you through where we can.

Tough place to be in.

At doctors’ and tohers’ suggestions I’ve eliminated this and that in the past, at one point both gluten and dairy for several weeks. No use until I went whole hog.

I encourage you to pull every possible trigger from the diet, as restrictive as that can be, or at least all the triggers on the Buccholz/ Heal Your Headache list. If eliminating those for a couple of weeks works, it makes sense to add them in slowly, one at a time. Leastways, that’s what my MAV doc suggested, and what’s working for me.

I’m so sorry about your son…he’s so young to be dealing with all this. You’ve gotten some pretty good input here on the forum. If you didn’t already, it makes sense to get some balance testing, etc. from a specialist - perhaps another ENT or ear specialist just to rule out anything vestibular (especially following a cold). Otherwise, it does sound like classic migraine associated vertigo symptoms so far. You’re doing a great job with all this. Let us know how your son is doing.

As one who has been helped by medication (and who would mainline chocolate if I could), I wanted to mention an important point that’s made in the emedicine article about MAV - there’s a link to this article elsewhere on this website, but for the sake of convenience:

The point is that only 25-30% of migraineurs are helped by diet modifications. But diet modification is certainly worth trying, because there are no side effects to not eating something!

Interestingly, neurologist/author Oliver Sacks was a young migraineur (not a dizzy kid, but he had auras and headaches) and his career in neurology was in part shaped by his interest in the bizarre things that happened to him as a child. Fortunately for him, his mother was able to reassure him, as you are doing, that things are going to get better, that he’s just as smart as he ever was, that these are “episodes” and he’s going to be fine. Hang in there - I’m not surprised there are no results after 2 weeks, as these things do take a long time to resolve (my medication is Topamax, and it took 3 months before I saw improvement).

Okay, I just read the survival guide, and I’ve got a question about caffeine. The survival guide says NO CAFFEINE. Some of the people I know in real life who have migraines say that they find caffeine helpful. My kid certainly does. He’s been drinking more Coke than usual, and we’ve been letting him, since this has been going on, because it makes him feel better.

He has weird reactions to a lot of medications. He can’t tolerate any of the SSRIs, and the benzodiazepines make him agitated and angry. But Coke helps settle him down when he’s wound up. It’s really the only thing that works as a quick-acting soother for him. And it has to be Coke. No other soda does the same thing – in fact, he doesn’t drink any other soda. I know there are a lot of botanicals in the flavoring for Coke, and I suspect that, for him, there’s some kind of atypical psychotropic effect. It doesn’t seem to interfere with his sleep. It’s hard to tell, with him, that it’s a stimulant.

So, my question is whether caffeine is a problem for all people with migraine, and this is something we’re just going to have to deal with. Or whether it’s benign for some people with migraine. Or at least not so problematic that we have to remove it right now. Because that’s something I really wouldn’t want to do, if I didn’t have to.

Does that make sense?


Oh, and another question, about sleep hygiene.

When he’s dizzy, he can’t sleep. And laying down makes the dizziness worse. How do you manage a consistent sleep schedule when that’s a problem?

We’ve been reluctant to make him get up in the morning, if he wasn’t able to sleep the night before. Should we?


Hey there,

I’m sorry, it must be tearing you up seeing your son in such a state.

Caffeine is a difficult one as like many food triggers for many of us, we often don’t see direct cause and effect links as the effect may be somewhat delayed.

Caffeine is often found in migraine abortive drugs and I myself when I only had intermittent symptoms often found myself craving coke when feeling bad. The problem is that caffeine is a stimulant, and most of the preventative medications that we find useful for treating this condition have the aim of desensitising our nervous system or of dampening the activity within the brain. By ingesting caffeine whilst trying to do this you are, as described by one neurologist I spoke to, trying to drive whilst keeping your foot on the brake. He felt strongly that continued caffeine ingestion was a reason that preventative drugs failed for many people.

You do also talk of your son’s poor sleeping at the moment combined with drinking even more coke than usual? I’m sure it’s not the only cause but the coke really might not be helping.

This condition really does tire you out - if you have migraines yourself then you’ll appreciate that “washed out” feeling you probably get afterwards, well he’s probably feeling like that a lot of the time hence getting some short term relief from the caffeine in coke. I tend to find that I can sometimes feel quite agitated and restless with this disorder and tiredness does make that worse. He’s probably in a vicous cycle of cafffeine giving short term relief followed by rebound symptoms that make him want more coke, but the coke stopping him sleeping is probably making him even more restless and agitated in the day.

There are no guarantees and some people continue with caffeine throughout and swear it has no effect. Maybe something worth discussing with him and seeing if he’s prepared to sacrifice it for the hope of getting better faster - I’d certainly be trying to persuade him. Oh, just one more thing though, if you do decide to go caffeine cold turkey then do be prepared for a nasty headache for a few days due to withdrawal - may well be worth it though.

As for the sleep issues, firstly just to check that he’s not getting hallucinations/nightmares from the propranolol that are affecting his sleep? If so this needs discussing with his doctor. Otherwise it’s trying to find practical solutions to help - some people find they need propping up at night (maybe a wedge of foam under the head of his mattress), some people can only really sleep in certain positions without getting dizzy - if this is the case then he may need extra pillows/bolsters etc to support him like this. I often find a neck support (like those you’d wear after whiplash) can be helpful in stabilising my neck and making me less dizzy.

If he gets any head/neck pain or discomfort then heat packs can often be helpful too - you can get microwaveable lavender ones for night time.

Sleep deprivation does make this horror worse, so I certainly wouldn’t be waking him up at the crack of sparrows, however you probably do need to limit how late he sleeps in if he’s not sleeping at night. May be worth chatting to your doctor about something to help him sleep if he’s got totally out of any regular pattern. I found melatonin very helpful and this may be a good starting point if he’s sensitive to benzo’s etc.

Hope that makes some degree of sense - it’s late at night here so apologies for any waffling.
Hope you make some progress soon,

Hi, Helen,

The thing is, his sleep issues don’t seem to be at all related to the caffeine consumption. He’s not having trouble sleeping every night. Just when he’s having more dizziness. At first, he’d feel panicky and anxious if he was dizzy at bedtime. But he’s learned that if he waits, the dizziness will subside enough for him to sleep. So he waits, and eventually he gets to sleep. As long as he doesn’t have any vertigo spells during the night, he seems to get enough sleep. It’s just not on as regular a schedule as one might like.

When this first started, he was having more trouble sleeping than he’s having now. One thing we did that helped – we took his bed out of his room and replaced it with the futon from the family room. He had been sleeping on the couch in the living room, because he wanted to sleep scrunched in the corner between the seat and the back. That made him feel less like he was going to roll out of bed with the waves of dizziness. With the futon, if he wants to try sleeping on it in the “bed” position, it flips down easily. And as long as he wants it in “couch” position, he can have it that way. And that helped a lot.

One thing that concerns me a bit more than the Coke is electronics. When he can’t sleep, he doesn’t want to lie there bored in the dark. And if he is too dizzy to sleep, he’s probably too dizzy to read. So he surfs the web. I’m not sure that’s a good idea. But what else can the kid do? I’m just not sure.

I’m hoping he’ll sleep better tonight, because (for the first time in a long time) he got out and took a walk. We’ve borrowed a cane from a friend, and that allowed him to be stable enough on his feet that he was comfortable walking around the block. And it was snowing (but the snow wasn’t sticking), so walking in the fresh air with the snow coming down made him feel pretty good.

And I keep thinking that fresh air and exercise, if he could get it, would have to help his sleep.

I understand what you’re saying about wanting to calm the brain, and caffeine being a stimulant not helping with that. I wonder if I could get him to switch to caffeine free Coke. It’s the Coke that he wants, not necessarily the caffeine …


I just realized my last post might not have been clear. The Survival Guide talked about sleeping at the same time every night. That’s what’s not working for my kid. It’s not that he’s not sleeping. It’s that he’s not sleeping on anything approaching a regular schedule. (Apologies for the double post, and apologies for not being particularly clear. I feel like I’m taking an advanced class in something that I never took the prerequisites for! I not only don’t have the answers, I’m not sure I understand the questions.)

Mamabear - A lot of this is trial and error. And some docs will emphasize one finding over another. And there are always exceptions. So do the best you can, and don’t beat yourself up!

You can’t eliminate everything from his life - you could put him in a padded room and feed him oatmeal 3 times a day, but what kind of “life” is that??? - you’ll have to use your judgment, and later when you find out what works and what doesn’t, you can’t be mad at yourself over what you didn’t know when you didn’t know it. You’re a great Mom, and you don’t have a crystal ball so you can’t see what the future research will tell us about this. (But if you get one, clue us in, OK?)


Excedrin Migraine has caffeine in it. Flashing lights are a migraine trigger for some people (that would include computer screens). So there are no absolute truths about what anybody should or shouldn’t do in their particular case - again, trial and error. You can keep reading and researching, but don’t forget to spend fun time with him, and with your other loved ones and friends - being a caregiver to someone with a chronic condition can be exhausting. Don’t get sick yourself! He needs you to be well. Take care of you, too.

Thanks for the reassurance. It helps a lot.

Of course, I’ve still got more questions!

His neurologist has referred him for vestibular rehabilitation. His first appointment is next week. Has anyone here done VR? From reading online, I’ve seen that it helps, and that it doesn’t. That seems to be typical of treatment for MAV. One of the articles I read said it would make his symptoms worse at first. If you’ve had it, how bad is it?

And a question about triggers – I understand keeping a journal to look for triggers when you have migraines that come and then go away. But my kid is going on 8 weeks now. Sometimes it’s a little better, and sometimes a little worse. But it’s never gone away. Does it even make sense to think about triggers right now? Is this really multiple overlapping migraines that keep getting triggered? Or is it one immensely long one that won’t go away? Can things that trigger a migraine sustain one once it’s going? Or does it even make sense to ask these sorts of questions?



Oh bless him, it’s tough having this at any age but I do really feel for him dealing with this when so young.

It’s a real minefield trying to work out what to do for the best with this thing, and I think you hit the nail on the head when you talked about food diaries and triggers. This is great and can be very effective if you are having intermittent symptoms, but when it’s continuous 24/7 dizziness it’s virtually impossible to work out what your triggers are. A lot of the advice you will read will be very good advice but more suited to those that have acheived some level of control over their symptoms and are trying to avoid bad spells.

Having said that, there are certain foods which are known to be common triggers and so although you probably don’t have any hope of identifying whether these are true triggers for your son at this point, it may be sensible to consider avoiding, or at least readucing these when making meals for him. Conversely some specialists don’t put much emphasis on avoiding dietary triggers and many people will recover from this condition without altering their diet at all. Caffeine just falls into this camp, and to be honest, I think a lot of it at the end of the day comes down to how desperate we get. We make small lifestyle changes (usually the ones we can make the most easily) and if we see no improvement in our condition then we change bigger and bigger things until we find a balance that works for us. You could put him on a strict exclusion diet and be sure you are eliminating all food triggers, but on the other hand this will make him miserable as sin on top of feeling ill and so would not feel to me to be an appropriate thing to do at this stage. May be worth getting hold of a copy of David Buchholz “Heal your Headache”. Have a read and make your own mind up about whether this is something you want to pursue at this stage - there really is no right and wrong.

I think the same rule goes for the sleep advice - when you have some sort of symptom control/only intermittent dizzy episodes then trying to have regular sleep/wake times is ideal in trying to keep this condition in check, however when you’re struggling to sleep because you feel so ill continuously then I think you just have to be pragmatic about this - his symptoms are likely to be worse if he’s exhausted, so sleep at whatever time that may be, is better than being sleep deprived. And yes, I think getting him out and about in the day if he feels up to it is a good way of trying to re-establish some kind of day/night sleep pattern.

As for the futon etc, sounds like you’re doing exactly the right thing to me. If there’s anything he finds that gives him a bit of comfort then go with it.

With the web surfing I think you probably need to follow his lead. If it made him feel worse then I’m sure he’d be avoiding the computer but if he’s not complaining of it making him worse then it probably isn’t. It’s also something to keep him distracted from how he feels which is definitely a good thing. It may help him to turn down the screen brightness a little if he’s stuggling with light.

In terms of VR, yes, I did this myself for a period when I first got ill and was (mis)diagnosed with an inner ear cause for the dizziness. It’s main indication is for inner ear disorders - if there is some “fault” in the way the ear is sensing your position in space/movement, then the idea is to train your brain to compensate for this “fault” by repeating movements (at first simple, eventually more complex) over and over again until your brain gets the hang of the new way the inner ear is functioning and learns to compensate for any deficit.

It’'s controversial whether VR is indicated for a pure migraine picture which does make me wonder whether your specialists have totally ruled out any inner ear involvement?. It generally is not as effective for migraneurs, at least not until the migraine is under some semblance of control, as even if there is an accompanying inner ear problem that definitely would benefit from VR, you are expecting a “malfunctioning” migraine brain to be able to learn to compensate for a “faulty” inner ear. Again, you maybe need to be pragmatic about this - by all means go along and get the excercises if this has been recommended, but if you find that these are making him lots worse, or he is not progressing through the excercises as he should be then don’t hold back from rediscussing it with your neurologist. What works for one may not work for another, or may work for another but at a later stage.

Finally just to echo what Maryalice said, a lot of the posts you will read on here from people who have real insight into their condition, triggers etc are people who have been managing this condition for a very long time. It took me over six months of symptoms before I was even tried on any drugs for migraine, and some people go on for years before getting diagnosed correctly. Although it must feel like your son’s been ill for ages you really are miles ahead of the game with this already, he’s being tried on a drug that is often very effective for this condition, he’s under a neurologist who seems to have some insight into this condition and he’s being well loved and cared for. Just try to see all of this other stuff as the cherry on the cake rather than the be all and end all, it’s good to look into and some small changes may be beneficial but these are all just guidelines that some people have found useful, and definitely not rules that you should feel duty bound to adhere to.

I’m sorry I can’t be more specific, it takes time to really get a feel for this disorder and what is helping or hindering it for any specific person, but it really does sound like you’re totally on the right tracks with what you’re doing, just carry on being there and giving plenty of love, support and reassurance and hopefully he’ll start seeing some improvement really soon.

Oh, one last thing I meant to ask was whether he’d tried any medications for short term relief of his symptoms - I used cinnarizine (a vestibular depressant) initially when I got this, some people find valium or xanax is their rescue remedy - might be worth discussing with your neurologist whether there’s anything he can take that might offer him some short term relief whilst you’re waiting for the propranolol to be effective.

You take care of yourself now,

One little suggestion, just on the very faint chance that your son hasn’t experimented with it as a means of distraction from the unpleasant sensations, the boredom or both: absorbing music.

Mamabear - in the meantime, it might be wise to set up an appointment with another neurologist to get a second opinion. I was originally diagnosed with Meniere’s disease (vestibular condition). If you haven’t already, you can read all about vestibular conditions on the VEDA website (the vestibular conditions association) and also on their Facebook page… great discussions there as well regarding success of VR, medications, crossover of MAV, etc. I think a second opinion for all this could be encouraging since your neuro is giving you some mixed signals. Hopefully it wouldn’t confuse things more, but at least you would have more information or professional input to choose from. That is how I ended up with a diagnosis of migraine variant and am now being treated more successfully. I am grateful for the team that I have compiled for my care: a primary care physician, an allergist, a neurologist, a physical therapist (cervical work), the pharmacy, and the health food store! Hang in there.

Thanks so much, everyone.

This is actually the third neurologist we’ve talked to, and the second he’s seen. He has static diffuse encephalopathy, and the first one we talked to was the one who did all the evaluations and such for that. She’s fabulous, but (a) she’s not on our insurance any more and (b) she said quite frankly that this isn’t her area of expertise. We called the clinic she suggested (a multidisciplinary clinic specializing in dizziness and balance disorders), but they don’t see patients under the age of 18. The clinic THEY suggested didn’t have an opening for like three months. We called back the ENT, who suggested someone – we got the appointment, and my dh and the kid didn’t like him at all. He didn’t listen. He dismissed their concerns. He said the kid’s gait was “normal range” (even if it is, it’s not normal for him!). Then he wanted to order a CT scan, an EEG, and a whole bunch of other stuff.

So we called back the clinic that didn’t have an opening for three months, and explained the issues, and asked if they knew someone who was not with their clinic, but who might be good. That’s who we’ve got now. Dh (who’s going to all the appointments currently) and the kid both liked her. She listened. She wasn’t patronizing. She asked questions that made sense. She seemed both optimistic and realistic. (Yes, this will get better, but it will take time. And it’s okay if you’re missing school now. You can catch up later, when you feel better.)

So I don’t really see getting another opinion. Not yet, anyway. This neuro has only seen the kid once. I think we need to go with her for a while.

I’ve seen a number of things saying that benzodiazepines can be helpful. I wish we could try those – he can’t tolerate them. I think it’s because of his underlying neurological stuff; there are a lot of psychotropic meds that just don’t work the same way in him that they do in other people. He’s going to see his psychiatrist this week, so she’ll be familiar with what the neuro is doing. Hopefully dh and I can keep all the docs on the sam epage.

I really appreciate the informaiton and encouragement here!


Mamabear - I’m sorry, I didn’t realize that you’d already been running the doctor hurdles. It certainly sounds like you’re in the right spot. It’s really important that your son like and feel comfortable with the doctor. And, your son has an uncommon but not unheard of paradoxical reaction to the prescribed/intended reaction to medications. It happens to my grown daughter often. It really takes a patient doctor that will collaborate with these kinds of patients. You’re doing a stellar job, I’ve gotta hand it to you! And, a psychiatrist will be most familiar with the overall picture of the various medication groups. You just gotta keep us updated. Your son can only get better. Everyone on this board knows the debilitation of dizziness.