Help Dizzy Child! Please

Please! We need your help/recommendations. My child, now 12, has had dizzy episodes since age 3! Her episodes are around 3 month apart but it isn’t predictable. She’ll wake up in the morning (occasionally waking earlier than normal due to feeling “sick”) with terrible dizziness, often nausea (more now than when younger I think), sensitivity to light, difficulties with vision… Her episodes are now usually 3-5 days, average of 4 days. Usually day one is the worst and then each day is a bit better although that is changing a bit. Always she is worse in the morning and sometimes gets a lot better by evening! just to feel bad again the next morning. When it is bad (which is typical- she rarely has only a little bit of dizziness at the start of an episode) she can’t/won’t sit up or get out of bed and she insists on a very dark room. She may crawl to my room to sit and watch tv as she feels better. On the days she is getting over the episode and/or in the evenings of an episode she’ll just feel “not quite normal” and will avoid moving or turning quickly. Her MRI, allergy tests, EEG’s, visit with ENT, visit with neurologist, and sleep study have shown nothing the dr.s say. The neurologist did say her heart rate was quite low at one point during her sleep study, however. We haven’t yet monitored her heart. At age 3 her pediatrician of the time (a great dr.) thought it was migraine related. However, she has tried 2 migraine meds in the last couple of years and neither seems to do anything. I think her prescription antivert takes the edge off.
PLEASE let me know if you have suggestions or opinions. My child is SO frustrated and would do anything for help!
Glad to hear some of your personal stories.

Hi rflaten

This is actually not that uncommon for migraine in children. The good news is that most “grow out of it”. Was she getting the episodes just as regularly and severely at 3, or has it changed over the years?

I would suggest if they have only tried 2 meds, there is still many more in the arsenal, and it sounds like it is interfering enough with life that it would be warranted to keep trying to find something that works. Chances are that it is not being triggered by anything that she can avoid.

What meds have they tried her on?


My daughter had a history of similar morning vertigo episodes, starting around age 6. She would wake up, and couldn’t lift her head off the pillow. We discovered that if we gave her a dose of ibuprofen, the episodes would commonly resolve within a few hours. Usually she could go to school that day.
Around 12, at puberty and after a mild head injury playing soccer, she developed classic migraine with aura. She only had a few of them.
Then at 16, she had her tonsils out, and developed a status migraine that started in the recovery room–as vertigo–not pain–that required an ER visit to break. It broke with compazine, but it gave her tardive dyskinesia.
Earlier, I had taken her to a neurologist because she complained that her head felt funny every day, and was diagnosed with constant aura, and treated with magnesium.
A few months after the ER visit, she got the flu, got a constant, unremitting migraine–again experienced as vertigo–and ended up in the hospital. The neurologist could not understand how vertigo=migraine, and implied she needed psychiatric evaluation.
What followed was a year of misery–constant episodes, some that resolved with imitrex/motrin and some that left her holding onto the walls for days. She spent a lot of time in a dark room, trying to get through this. It was horrible. I took her to “world experts” who weren’t helpful. Ironically, her ENT diagnosed MAV immediately after her discharge and she tried amitryptiline but hated the sedation–really only gave it a few day trial.
Ultimately, she finally found relief on nortriptyline. Also, she saw an otologist who confirmed the MAV, and we use his consult note to inform her doctors. She did try biofeedback, but it didn’t help.
Currently, she is very stable on her notriptyline, low dose, with an occasional use of ibuprofen. She hasn’t used imitrex for a couple of years.
Puberty is a rough time for migraneurs. And, MAV is frequently not understood by physicians.
I would recommend getting a copy of the eMedicine MAV article:
For your knowledge and your physicians’.
My daughter also takes the migraine supplements, magnesium 500 mg/day, coQ10 150 mg/day, riboflavin 400mg/day, fish oil 1 gm/day
The otologist and the neurologist both told us that migraines frequently spiral out of control with puberty, and will settle down in a few years. Unfortunately, many migraine drugs have never been tested on children: in the US, only imitrex nasal and naprosyn are considered approved, but many other drugs are used “off label”. Personally, my daughter did not do well with depakote, and with nortriptyline it took almost 6 months to find the right dose (30mg). Her neurologist–the third one- and current one–was going to try verapamil next.
Other non-drug things that help: staying very hydrated, the migraine diet (from Buccholz), avoiding aspartamine, and regular sleep/wake cycles.
Currently, my daughter is doing quite well, but I vividly remember how hard it was to have her suffer, and get little to no help from respected physicians. I work in medicine, and spent a lot of time researching and advocating and getting frustrated and scared.
Your child is experiencing paroxysmal vertigo–a migraine equivalent, along with the prolonged vertigo of MAV, in my opinion. I hope you find helpful physicians, and that things get better.

Adam and Kira,
Thank you for the messages! It feels good to know that someone out there will listen and really understands and supports my efforts.
Adam,to answer your questions, she has gotten worse since starting at age 3. The frequency may have increased a bit but she the spells definitely impact her life more. We tried, on separate occasions, Zomig ZMT 2.5 mg (zolmitriptan) and Maxalt 5 mg tablets (rizatriptan benzoate) which I was told to give her at onset of symptoms and again one hour later. They did nothing.
Her neurologist was terrible (and really, I mean that; he considered only typical diagnoses to decide he didn’t know what her problem was, and when I asked for a school note to excuse her many absences he wrote a damaging one saying she shouldn’t have unexcused absences since HE found no neurological problems. grrr). But we have gone back to her pediatrician who listened well and is all for trying to treat this as MAV. She is starting daily periactin today. We will meet with him again in 3 months and if this doesn’t work we will do a heart study then move on to some other drugs. If she goes 3 months without a spell I will kiss his feet! I will kiss everyone’s!!
Kira, thank you for your story. I told my pediatrician and he even asked what worked for your child! just to keep it in the back of his mind I suppose. It sounds like your child experienced both headache-migraine and the dizzy spells. My child has had some headaches that must have been migraine. Just 2 nights ago she went to bed early with one and woke up fine. We discussed how that is SO much better than her dizzy spells. She would trade for the short-term headache migraine any time!
Do either of you think the periactin may help her?

Periactin is a time honored migraine preventive for children: it’s an anti-histamine that has some serotonin effects. The worst side effects are sedation and possible weight gain. With all preventives, different people get different responses–the old “mileage will vary”. The goal for prevention isn’t 100% symptom free, it’s 50% reduction.
I’m very fond of the Larry Robbins headache website–he’s a neurologist in Chicago. While his free Headache 2008 download, a textbook for headache management, doesn’t address MAV, it covers headache drugs very thoroughly.
For my daughter, the nortriptyline didn’t work right away, and at 25 mg she had symptoms, but they diminished greatly at 30mg. At 50mg she had a terrible headache. Her current neurologist admits that some people have a specific dose that is effective for them. It took us 6 months for her to find the right dose, and get some relief. Who knows, maybe she was getting better on her own at the same time also.
She’s so stable now that her neurologist discusses stopping the medication, and she doesn’t want to.
Here’s the Robbins website, the Headache 2008 is a download at the bottom of the page

Good luck. My daughter would agree that a brief episode beats months of dizziness any day. Thank goodness for your doctor. I was very disappointed in some “world experts” we sought out.

Summer 09 update: My daughter is now on her second prophylaxis which is Inderal, or propranolol. It didn’t help at first so we doubled the dose and she takes 20 mg twice a day. She still gets dizzy spells and it is much more predictable- just shy of 3 months almost every time. Lately she tried taking Imitrex at the start of a “spell” one morning, then another 2 hours later. She had a better day than most (given it was day one of a dizzy spell), but we don’t know if this was the Imitrex or just because her first day isn’t always the worst (although in the past is was always the worse day; now it is usually day 2 or maybe 3).
Should she try taking the Imitrex several days in a row? I am waiting to see what the Dr. says. What comes next since neither drugs she has are helping. She seems to deal with this “better” now that she is older, but she gets crankier. She is so frustrated. I would say the severity of the five day spells may be less than several years ago but they are still five days (or a bit more now).

This forum is a God-send!