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Specific Illnesses & Conditions VM/MAV
1

Some of y’all might remember me. I have a teenager with chronic vertiginous migraine. I call him The Kid here.

Last time I was here, he was doing pretty well. But he’s not doing well any more. He has had migraine almost constantly since summer. The headache part hasn’t been constant. But the rest of it has been pretty much non-stop. He’s walking with a cane again, because of the imbalance and ataxia. His wordfinding is pretty seriously impaired most of the time. Photophobia and phonophobia are constant companions. And now osmophobia, too. The brainfog is thick and deep. He’s not been able to attend school enough this year to have any hope of getting any credits.

We switched in August from a pediatric neuro to a neuro who is board-certified in headache, hoping that would make a difference. The new neuro tweaked meds a bit – added Petodolex to the prophylaxis regine, switched him from Maxalt to sumitriptan with Aleve. The Maxalt seems to take the edge off his migraines when he gets it in time – it’s like he moves from the prodrome to the postdrome without much of an attack in between. The neuro thought a different triptan might work better for him, but sumitriptan with Aleve was horrible, so he’s back to Maxalt prn (no more than 3x per week, to avoid complicaitons from overuse). We can’t really tell whether the Petodolex is helpful or not. (He’s also taking propranolol, lamotrigine, and Migrelief (a combination of riboflavin, Magnesium, and feverview).

The neuro recommended improved sleep hygiene, so we’ve been working on that – but active migraine seems to mess up the Kid’s sleep, either making it impossible for him to sleep, or impossible to stay awake. But we’re working on it. Every night at 9 sharp, screens go off and he takes 5 mg of melatonin and a hot shower. (Unless the phonophobia is too bad for him to be able to tolerate the sound of water running.) After that, he usually doesn’t have too much trouble going to sleep, but can’t always stay asleep.

We’re looking at “next steps,” because this clearly isn’t good enough. We’ve ordered a pair of FL-41 lenses from the Moran Eye Center in Utah, on the off chance that those will help. We’re considering neurofeedback as the next thing to try, or perhaps food allergy testing.

We’re also wondering whether it’s time to apply to Social Security for disability for him. He’ll turn 18 this summer, and we can’t imagine him either working or going to school until the migraines are under control. And at this point, we’re not seeing much hope of the migraines being under control.

Mamabear

2

Poor kid! Sounds like it’s been a rough ride. :frowning:

I’m assuming you’ve tried some version of the migraine diet. How about hydration - is he keeping well hydrated, as in about 13 cups of fluid per day (the amount recommended for adult males), none of which contains caffeine?

Also, my initial reaction to the screen shut off time was that 9 pm was a little late - maybe 8 would be better? Part of good sleep hygiene is establishing a ritual of “winding down,” and I think someone like him needs to “work” at quieting his migraine brain. If he can’t tolerate a shower, would he take a bath? Warm water is a good way to relax before bed. It wouldn’t hurt for him to learn some progressive muscle relaxation techniques, deep breathing, a few basic yoga poses (nothing inverted!), or something along those lines for him to be doing in the evening hours before bed. Better than screen time, in my opinion.

Best of luck to you both!

3

Screen time is over at 9 pm because the only thing he can do that he enjoys most days is catch his favorite “news” show, which is posted online at 8 pm our time. We could make him wait until morning to see it – but, honestly, he’d have trouble sleeping if he had to wait until morning, because he’d be so worried that he might have missed something. Not entirely rational, but there you are.

We did an elimination diet – he hated it, but he was compliant. Eliminated all the foods on the list from his neuro. And it didn’t make any difference. :frowning: He wasn’t sure if he was hoping it would help, or hoping it wouldn’t. But it didn’t. The only food trigger we’ve identified is aspartame. Nothing else seems to matter.

Sleep deprivation and dehydration domake his symptoms worse. He’s good at staying hydrated. Sleep is another issue. He has never slept easily or well, even when he was a baby. It took us a while to persuade him to try the sleep hygiene protocol, but he’s sick of being sick, so he’s working on it.

One basic self-care thing that he’s still not good at, though, is eating. He is simply not hungry when he’s migrainous, and he’s migrainous nearly all the time. We try to coax him to eat a little bit of “easy” food no matter how he feels, but sometimes he just can’t. He’s lost a lot of weight over the last year, which is not what you want to see in a teenaged boy.

4

Being a “news junkie,” I so understand his not wanting to miss that program!! It would indeed leave him feeling like he was missing something, and it would probably wreck his sleep even more.

Yes, the food thing is a problem - I know how that feels too. I’ve only thrown up once in the middle of a severe migraine episode, but many times I’ve felt that vaguely sick to my stomach feeling that can come along with this - it’s really hard to eat when you’re feeling queasy.

5

Hi Mamabear,

Sorry you’re back…

Can you tell us exactly what preventative meds he’s tried? Is it only Lamotrigine and Propranolol so far? Has he tried an antidepressant? A lot of us have had success with a med from that classification.

At the risk of switching to yet another doctor, is it possible to see a doctor who has experience in dealing with MAV rather than a standard neuro?

Has he tried Zomig as a triptan? I have not come across anyone who has not responded well to this. I know it’s more expensive than Sumitriptan but it sure works well. It can be taken in tablet or nasal spray form.

Lastly, I know it’s boring but not eating really is a killer for me at least. I know it’s difficult to keep up with as I too don’t feel hungry a lot of the time, especially during bad attacks, but it’s much better in the long run, even just to eat often and small.

MMx

6

He has odd reactions to a lot of different medications. He can’t tolerate any tricyclics, SSRIs, or benzodiazepines. That makes him hard to medicate.

He’s tried one other triptan, besides sumitriptan and Maxalt. I don’t remember what it was, though. But not Zomig, so it might be time to try that one.

Switching doctors is hard because of his age. There’s a clinic that focuses on dizziness and related issues – I don’t know how much MAV they see, but they seemed like a good place to start. Unfortunately, they won’t see anyone under 18. This doctor will see patients as young as 15.

Thanks for the encouragement on diet. We’ll start working harder on that one with him. He was feeling pretty good yesterday evening, and ate two or three small suppers, so that was good. :slight_smile: We haven’t pushed it very hard, because we’ve been afraid of triggering vomiting. So far, that hasn’t been an issue for him. We don’t want it to become one!

Mamabear

7

Hi Mamabear,
I was just wondering if you had ruled out the possibility of scds?
en.wikipedia.org/wiki/Superior_c … e_syndrome
my son had it but it was fixed with a surgery

just a thought
best of luck with all

8

Also wondering if you’ve checked out any alternatives besides migraine, such as mold reactions or Lyme Disease. Some of the more rare molds can cause all sorts of weird neurological symptoms, and Lyme and the associated co-infections also can have quite a few odd neurological symptoms.

For mold, if it is a possibility in your house, sometimes a couple of days away from home in a known mold-free environment is enough to see beneficial results.

For Lyme disease, you really need to see a Lyme Literate Doctor (LLD) who knows the symptoms (especially the co-infection symptoms) well enough to offer an opinion. Most doctors who don’t treat Lyme regularly only know the ‘classic’ symptoms, and often times rule out Lyme based on lack of same.

I’m curious when all this started…back to the very beginning. Was he just your normal kid one day and then wham, constant migraine the next? Onset is important.

My last suggestion is to stay on top of the doctors as best you can, and educate yourself as much as possible. Ask for extended appointments if necessary (most docs have 15 or 20 minute ‘blocks’ per patient, but will often allow for multiple ‘blocks’ if you ask), and make sure you question EVERYTHING. Print out related info (especially if it has a university or an MDs name on it!) and bring it with you. Your conversation should go like this:

You: Do you think it could be condition X?
Doc: Doubtful.
You: Why?
You: Which symptoms don’t match?
You: How many cases of X have you dealt with personally?
You: (pulls out case study by university Y on condition X by Dr. Soandso) - I read this, and it seems to be a possibility given symptoms/age/risk factors/etc…
You: Is there a specialist that deals with condition X that you can refer us to?
Etc…Etc…

Wash, rinse, repeat.

My not so subtle point is that, even with specialists, they can’t be experts on EVERYTHING, and their personal experience with symptoms and patient history often leaves them vulnerable to the trap of “it was condition X for the last patient with these symptoms, so it must be condition X for all future patients with the same symptoms”. You need to push them, and push them hard. Most people don’t like to be confrontational with their Doctors, but they aren’t there to be your friends, they are there to make your child feel less sick. Like I said… question EVERYTHING, and don’t be afraid to disagree with them, if you feel strongly enough about something.

Bottom line, there IS an answer out there somewhere. I pray to god, for the sake of your son, that you find it.

Best of luck.

9

Hi MamaBear,
I was just thinking of you the other day and figured all was good, since I haven’t seen you on the board in a while. I’m not on as often as I used to be either, but mostly because I was without a computer for about 6 months…just used my iphone,which made it tough to respond.
Did you ever try Topamax>??
I’m sorry to hear your son is struggling. It seems so unfair, especially at such a tender age.
Hugs and prayers to you…
Kelley