Myoclonic episodes and negative EEG

[seastes]

My 17-year-old daughter has had recent onset of unusual symptoms. A week ago started with 3 fainting episodes in a row, then felt extremely tired. Had EEG and EKG done that were negative. Then two days ago started with uncontrollable jerking in arms, legs, and head. ER docs didn't know what's wrong. Was sent home with Ativan (anti-anxiety med) which do make the jerks go away, but the they recur when med wears off. Does this sound like epileptic seizures even with a negative EEG?

[RobinN]

We just found out that my daughter has low blood sugar episodes which can cause seizures.
This is after 2.5 yrs of following the usual medical path for seizures. Many of the blood tests didn't show this happening. It was only after a 3 hr glucose tolerance test did it show up. I have been concerned about this from day one and was told it wasn't a problem.

You could try magnesium. Many of us are deficient in the mineral, and there is no side effects other than loose stool from taking too much. This can also help to relax muscles. As will Epsom Salt baths, which also has a form of magnesium in it. I take ionic magnesium for migraines, and my daughter has been taking chelated magnesium for seizures.

Welcome by the way. My daugher Rebecca is also 17.

[Crazy Monkey]

Hello

Welcome to CWE

I have bouts of Myoclonics (reflex jerking seizures) is this the type of jerking you are talking about? or something more severe? from time to time, they seem to come and go with no pattern, I can go for weeks with maybe only having a couple now and again, then all of a sudden I will get about 10 or more in a day, I will be sitting here minding my own business one minute and my leg will suddenly kick out the next, they are a form of seizure, has your daughter actually been diagnosed as having these?

Take care

Kim

[seastes]

My daughter has not been officially diagnosed yet. Is seeing the pediatrician on Monday. The jerking episodes are not just little twitches but much more violent jerking with her head jerking back, and right arm and leg jerking in a rhythmic pattern. The only thing right now that makes it stop is taking the Ativan.

[Bernard]

Hi seastes, welcome to the forum.

Yes, it does sound like you could be describing a tonic clonic (convulsions) or atonic seizures (fainting episodes with post-ictal tiredness).

Yes, it is possible to be experiencing seizures with a clear EEG and EKG. If your daughter had experienced one of the seizures/fainting/convulsing episodes during the time that the EEG/EKG was being done and still no abnormal data was recorded, doctors might lean towards pnes, but even then, they could still be "epileptic" seizures. EEG testing is not 100% accurate and EKG testing will only pick up cardiac problems (which are not responsible for "epileptic" seizures).

[skillefer]

Hi seastes! I totally agree with Bernard. It sounds like seizure activity, and there are lots of us here who have perfectly normal EEG's. Honestly, no test is 100%. They help, but only if you're seizing during the test. *shrug* Your daughter will most likelly be diagnosed, as she has had more then one episode. That's how they usually diagnose it. If there's no history of epilepsy in the family (and migraines count as aform of epilepsy), they will most likely tell you that she has "ideopathic seizure disorder". That's the fancy way of saying, she has seizures but we don't know why.
Here's some info the doctor will want:

1. medical history (for example, did she have any head injuries or high fevers that lasted for a long time as a child.)
2. family medical history ( Are there any people in the family with seizures? And don't be surprised if there are, but they never wanted to talk about it....oh, and anybody in the family with diabetes?)

Also, If I were you, I'd have your daughter jot down the following info in a journal, and keep track of it from now on.;
1. food and drink (when and what she consumes, and how much)
2. sleep (how many hours uninterrupted does she get each night?)
3. stress (any new stress? And what does she do to deal with her stress?)
4. odd feelings (odd smells/tastes/sounds/feelings, migraines, fuzzy or spacy feeling...)
5. seizures (when they happen, how long they last, what she was doing prior..., and where.)
6. Her time of the month. (When did it start?How long are her cycles.)

Here's why she wants to keep the journal. To see if she can figure out what is triggering her seizures. The most common triggers include too little sleep, too much stress, and too many stimulants (coffee,tea, energy drinks, sodas, etc. ).
If she can figure out what's triggering her seizures, maybe by dealing with her triggers, she can get control of her seizures. Other triggers are hormone fluctuations, food allergies, low blood sugar , flickering lights and patterns, etc....

While you wait for the appt, try to get her on a consistent sleep schedule (7 hrs every night...), cut back or out the caffeine, get her on a regular eating schedule, and try to make sure that everything that she eats is healthy. (NO diet foods or sugar free foods...artificial sweeteners can trigger seizures too.)

I hope this helped. Feel free to ask questions, vent in the padded room, or chime in. You arent the only one who has gone through this, and you're not alone.
And if your daughter is diagnosed, dont get depressed. It's not the end of the world. Think of it like diabetes or asthma...a medical condition to be dealt with. Many of us here drive, have advanced degrees, have careers, loving families, etc.... this will only be as limiting as your family makes it.. Take care!

[Bernard]

... try to get her on a consistent sleep schedule (7 hrs every night...),

8 or 9 would likely be better

[Maryann]

Hi,
I am new here so please bear with me.
I have to agree about EEG's and their results. I have had EEGs where nothing showed up. I have also heard that lime jello can give a reading on an EEG.

I was diagnosed with E 38yrs ago (Wow, I hadn't done the math) The last neurologist that I set up with (I had moved to UT) wanted me to have an EEG before he saw me, I had brought in a half inch stack of medical records for him (*Keep a couple every time you see a doctor)
that is just a bit of history, szr types include generalized tonic-clonic, myocolonic, petit-mal ..
anyway
I know a bit of what I speak.

I think.

Blood Sugar!!! so very important! it can trigger more when someone is szr sensitive. (I like chocolate as a quick fix till I can take care of things proper .. like when I am at the bookstore)
I didn't catch her age but diet is so very important. I find high protein works for me. But then again, that's me. cottage cheese is good because the fat is high but so is the protein.

and rest, we all need sleep and there are many different opinions about how much.

don't fret. Its harder on the person who is having problems if the parent-friend is embarassed about them.

Excuse the spelling, I am not my best this morning

Thanks for listening
Maryann

[joan]

Welcome* She can have myoclonics and still have a normal EEG. My daughter did the first several EEGs and several video EEGs. The last week we spent in the hospital, they did FNALLY capture 2 spikes, thats it.

My daughter 16. Both my kids juvenile myoclonic epilepsy. Also, I dont want to be the bearer of bad news but for my daughter, the myoclonics started 2 years before her first grand mal. Also myoclonics usually happen more in the mornings.

Be well and hang in there. We are here for you.
joan*

[Maryann]

Hi Joan,
good to hear from you!
E does seem to run in families sometimes. My Aunt, Gramma, great Aunt ....
My Mom forgot how far back.
I have been having medication problems lately. Seems to kick up a bt more lately. I know I always felt more during the full moon and new moon so maybe this too shall pass.
I started a thought in my last post and got totally derailed...
When I saw the neurologist in UT that had me take the EEG an hour and a half earlier, he walked into th eroom and said "Has anyone told you that you have E before?
crazy
Be well
Maryann