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[Mahaza5]

Hi my name is Julie. My son (age 14) had his first grand mal at age 9. He has been diagnosed with Rolandic Epilepsy. In addition, he has CVS (Cyclic Vomiting Syndrome) diagnosed at 2.5 and Migraines.

A question I have is about what he is calling "dizzy" spells. He has not had a grand mal or rolandic seizure in about 1.5 years. But lately has been complaining of dizziness. He's going through a growth spurt - I'm wondering if the dizziness is also seizure activity? He's not due back to his neuro for four months, but I'm wondering if he needs a medication adjustment?

I really appreciate any thoughts/advice.

 

[RobinN]

Hi Mahaza -Welcome!

My daughter's seizures began at the age of 14, and are connected to her hormones. Along with the growth spurt, you might also consider hormonal changes, as well as dietary changes. I think it all can change seizure activity.

Could you describe Rolandic Epilepsy for me. I haven't come across that in my research. I had also not heard of CVS before. Though I have an idea from the name. I have had migraines for the past 30 yrs, and stopped them with magnesium. Also, my daughter is doing neurofeedback for her seizures with success, and I have been reading how this is a great therapy for migraines.

Have you read about nutritional changes that are for seizure control? I never knew there are estrogen rich foods. I have learned far more than I ever wanted to, but now that I have I guess it is my job to share the info when possible. Could it be possible that the medication is too high? I know too much can cause dizzy spells too.

The only thing a neurologist is going to do is experiment on your son. Up, Down... turn around, change.. and another one. Guess sometimes it is a c*ap shoot.

 

[Bernard]

Hi Julie, welcome to the forum. :hello:

Dizziness could be related to seizure activity, but it could also be related to AEDs (it's a side effect of many drugs). He should definitely have his blood levels checked.

Seizure activity does tend to increase when kids hit puberty and hormones change. They are also growing, so their increased body mass may require a higher dosing of meds. :twocents:

 

[hawke86]

Welcome to the forum. Mahaza I hope you enjoy it here.

 

[skillefer]

Hi Mahaza! I'd suggest that you talk to your sons neurologist. My best guess, would be that the dizziness is seizure activity. You said he's going through a growth spurt...and puberty tends to see an increase in seizure activity anyway (hormone shifts). I'd talk to the doc, have them check his blood serum levels.

 

[LynnW]

Hi Julie! Welcome to the forum. Lots of nice people here.

I'm really interested in the dizzy spells. Are they dizzy like "I'm gonna pass out", or dizzy like he spun around alot?

I ask, because, for years, I have had spells, off and on, where I would get dizzy like I spun around alot. They started about 6-7 years ago, maybe a year or two before my seizures started. At first they would hit very suddenly, mostly at night. They would sometimes be incapacitating, where I couldn't drive and they gave me motion sickness. They happened about twice a year, and lasted about a week or two, gradually tapering off. Now, I have it pretty much all the time, but only mildly, and when lying down on my back, or when I am in the dark.

I asked my neurologist about it, and he said it was unrelated to epilepsy, and probably caused by an untreated inner ear infection. Maybe......but I'm not completely sure I buy that.

Let me know if you find out anything more about the dizziness.

 

[Mahaza5]

Thanks for the welcome!

I posted the question late in the evening and ended up in the ER the next day with my 11 yo daughter. She has an RSV (virus) and is definitely not feeling well yet, but getting better.

Lynn - the dizziness you described sounds very much like vertigo. I had a mild case about five years ago. My Mom had a severe bout last year that she is still struggling with currently. At night you notice, when you're lying down and you go to roll over. It feels like you're on an amusement park ride - spinning and your stomach drops out. It can be from mild to when you get up out of chair the room spins in circles to incapacitating where you're vomiting over and over because the spinning won't stop. Mom sees and a specialist (ENT) and they've done PT. There are crystals inside you're inner ear that can become dislodged for a number of reasons: accident, illness, hitting your head... When they do, vertigo. PT involves manipulating your head in various positions to help the crystals move back into proper place. You may want to talk to an ENT it can last long term - lifetime.

The kind of dizziness my son is experiencing is short bursts. Like he's walking down the hall and all of a sudden "things go and in and out." Like shapes are coming towards his vision path.

To answer the question about the type of epilepsy, he has Rolandic Epilepsy. It is called so because its focus is the rolandic area of the brain. Seizures always take place during the first REM of sleep for my son. He feels tingling, numbness on one side of his face then he can't speak, drooling (typical for this epilepsy - a partial seizure). He's atypical in that most of his seizures have resulted in tonic-clonic seizures. It typically begins at age 6-8 (although can range between 3-13). It is sometimes called "benign" because it has a high likelihood of resolving on its own by age 15. It does have a genetic link in that usually a family member (his dad) has had it. It usually only affects one child in the family from an epilepsy perspective. But affects other children from a speech/language perspective as they can have the spikes without actually having any seizure activity.

Thanks for the advice - I moved his appointment up to next week.

Julie