New to Site ... Looking for symptom similarities

[Marilee]

Hi all... I'm not exactly sure how to use these forums, but I'm going to give it a try. My 9-yr-old daughter has been diagnosed with Partial Complex Seizures - generally I don't see them because she just gets quiet when it happens. However, she's been having some weird symptoms that the doctor cannot confirm is seizure related, but I'm SURE it is. She gets up in the morning and is fine - for 30 minutes. Then she has either dizziness, double vision or nystamus(spelling?)(her eyes "shake" or "roll" and she has the sensation of things either going up or down - usually up); sometimes she has more than one symptom. Eventually it can lead to vomiting (who wouldn't if you were dizzy constantly - and I have vertigo, so I understand that feeling). Her symptoms will sometimes increase or exchange, and eventually it'll go away (after 30 minutes to 6 hours or so). If she's had it particularly rough, she'll fall asleep and then wake up as if nothing had happened.

Has anyone ever seen anything like this? It's so frustrating to have no idea what is going on. I try to make sure she gets enough sleep, takes her medicine and eats as I know a lack of those things seem to be triggers for her. I'll let her sleep in tomorrow if she's tired, because I dread another day of her being dizzy or looking at everything with one eye closed (to stop the double vision). This evening before she went to bed she teared up and said she couldn't go to sleep because she kept remembering all the "bad things" (I don't remember her exact description, but basically when I asked her what she meant, she was referring to getting up and feeling fine and then all the symptoms coming back). This has been our third day of symptoms and no school/work. It's breaking my heart to see her suffer - albeit, her symptoms are so much easier to handle than others I have read about - but to see your child cry and not be able to fix it is heartbreaking, regardless of what it is.

I'm just wondering if I'm alone in this experience. My family has a tendency to be A-symptomatic, so I really won't be surprised if this is something unheard of here. But if so, I will keep looking ... thanks for your time.

[brain]

Marilee

Welcome to CWE!

So sorry to hear of your daughter's experiences.
But I would like to know if these things from what
I am reading correctly, from the time lapses; are
you giving her the medications after she wakes up
in the morning and then these episodes are happening?
This is what I am seeing here. If I am correct in what
I am reading here; I would strongly suggest that a
phone call to the Neurologist or Epileptologist to be
made. It is possible that your daughter's medication
needs to be adjusted or she is not tolerating the
medication very well, or possibility, she may very
well need a full neurological work-up. I am not a
Medical Doctor, but this is what I am assuming from
reading your post.

For what you are posting does not sound right,
and to me, personally, sounds like a medication is
too high or having bad side effect or allergic reaction
to the medication or medications; since you did not
indicate of what kind of medication(s) she is on.

I would take this issue seriously. If you must, you
can call the Epilepsy Foundation of America, by
clicking on the banner below and talk to someone
there and go over this accordingly and while they
cannot give you all the medical advisories, but they
can give you directives. However, I would also
strongly recommend that you also phone your
child's Pediatrician ASAP as well, and make sure
that he/she is aware of this situation as well.

I would be very concerned as you are. But feel
free to browse around the forums.

[brainwavez]

Hi Marilee,
seriously, that sux... I just read your post to my girlfriend, and the first thing out of her mouth was "she needs to get a new neurologist" ... and I totally agree.

My girlfriend said that the shaking eyes is a warning sign that a seizure is going to come on. Right before my seizures, i usually vomit very violently and each time it is excruciatingly painful due to the pressure it creates in my already pounding head. Anyway, I don't remember much after that, but after that, my eyes shake like your daughter's do. This happens as they're turning totally blood red; then my eyes roll up in the back up my skull and all hell breaks loose. I start convulsing extremely violently, i pi55 myself, I bite the heck out of my tongue, then my head/neck start to convulse. my head jerks left several times until it is as far as it could possibly go, then jerks really hard and really fast ALL the way to the right; as I am spraying blood everywhere (very much like a sprinkler). I am just so glad that I don't have to remember that stuff. I feel so bad that our 9 year old saw all of that stuff last time. Luckily he only saw the first one, I have been having Grand Mal seizures in groups of 3 at a time (within a few hours of each other... before I come back into my body).

But back to what I was saying. The shaky eyes are a warning sign of an inbound seizure. start pouring whey protein down her throat. One of the things that Dr. Aboumatar discovered, was that I hardly had any protein in my blood. And he was right, I was a super poor college student who was eating left over Chinese food and white rice for the last 2 weeks lol. Now I take all of my pills, drink protein and try to eat a lot of protein every day, it makes me feel much better; even if it makes me fart all the time lol.

I can feel when I need more protein; I get weak and my mind gets all cloudy, I feel sick to my stomach, and generally miserable.... like before I start getting nautious and before I start vomiting; I drink a blender full of 60 Grams of GNC's whey Protein, and I feel ten times better.

I had confidence in my first neurologist, b/c he was also the same neurologist as my Computer Sci teacher used. Plus, he seemed smart.

However I have since found a great Dr. and I like him a lot.
He runs the Austin Epilepsy Care Center, and is named Dr. Sami Aboumatar M.D. in Austin Texas.

You need to do what Dr. Aboumatar did with me. Get her hooked up to the Video EEG as soon as possible. so they can record her seizure activity and know where it is coming from in her brain, how it works, what happens after it starts, where/what parts of the brain does the seizure start from and go to / what parts of the brain are being affected, and what is its time frame? so many questions can be answered by the Video EEG. like, is she on the right type of medications?!?!
My avatar pic is me hooked up to the Video EEG.

You need to ask your neurologist to bring the case up in an M&M (Mortality & Morbidity) forum at his local hospital (that's a dr's conference where they talk about complicated cases and things that have gone wrong in surgeries, things like that. that will give your neurologist about 600 incredibly smart dr's opinions for him to bounce off of). Most people don't know about M&M's research.
Every hospital has them, usually Monday morning at like 5am, after everybody's died over the weekend. Google Mortality & Morbidity, do some research, so you have ammunition when you talk to your neurologist, you don't want to downplay your daughter's problems, you want to help her become a great person, without mental problems or developmental issues. that is a totally reasonable thing to ask for... . No?

Warning: the neurologist will probably be rather put off by your request to do this, but it will make his A55 stand up and pay attention.


P.S. You are never alone. You have us!

[Bernard]

Hi Marilee, welcome to the forum.

... Then she has either dizziness, double vision or nystamus(spelling?)(her eyes "shake" or "roll" and she has the sensation of things either going up or down - usually up); sometimes she has more than one symptom. Eventually it can lead to vomiting (who wouldn't if you were dizzy constantly - and I have vertigo, so I understand that feeling). Her symptoms will sometimes increase or exchange, and eventually it'll go away (after 30 minutes to 6 hours or so). If she's had it particularly rough, she'll fall asleep and then wake up as if nothing had happened.

The sensation of things going up/down sound similar to the symptoms of a temporal lobe seizure. Falling asleep is a common post-ictal response to some seizures.

It sounds to me like a neurologist really needs to order a 24 hour EEG (video EEG) to capture the morning event and make a better diagnosis.

[drarvindr]

Dear Marilee,
Can you please elaborate on a few details ( as to what investigations were ordered .....) because it could just as easily be severe juvenile myoclonic epilepsy (famous for morning seizures) or inner ear problems (vertigo , nystagmus...). There isn't much history to work on and i can't make an objective decision online. she needs a contrast MRI and a 24hr eeg. maybe they've already been taken but i don't know. It could also be an allergic reaction but you haven't mentioned the name of the drug or the dosage , so i can't be sure. if more details were forthcoming i could perhaps be more useful. Have you seen an ENT about the vertigo issues?
Hope your daughter gets better soon,
Arvind

[RobinN]

Welcome Marilee -

My daughter while on a particula medication had terrible vision problems. Some times it would occur when she stood up quickly. Once she was off that med for about a month the symptoms disappeared.

[Marilee]

I am choked up that I actually got a response - thank you all for taking time out to answer my questions. I will do my best to provide the additional information you all have asked about (or not asked, but may be relevent). (Let me say up front - I'm sorry for the length of this ...)

Her first seizure was totally different than what she having right now, but I'll let you all know what we've done since this set of symptoms first started in Oct 2007. She's presently taking Lamictal, 200mg in the am and pm - I try for 8 o'clock, but as soon as she gets up if it's after 8; and I give her a loratadine pill (Claritin) for general allergies. (She's 62 lbs, and her blood test last year showed her at the high end of theraputic range.) When all this "eye-related" stuff happened, we went to urgent care because they were so severe, with the vomiting especially and I thought she was dehydrated. They ran all sorts of tests and didn't see anything abnormal in her lab work. They saw her acting dizzy and her pupils twitching, and after all day in Urgent care with an IV, sent us to the ER for more testing (they didn't have the equipment there). We had two MRI's - with and without contrast - which they read as normal (no tumors or scar tissue, etc). {An aside: Before 2007, we had a 24 hr EEG, which came back as no seizure while it was recording (this was before the eyes-thing)}. We went in the next day to her neurologist (who has since retired) and she was still extremely dizzy and off-balance so they hospitalized her to do another EEG and a spinal tap (to see if it was an infection). I think the EEG showed she still HAS seizures, but she was not having one. They told me that one of the medications given for a spinal tap was an anti-cunvulsant and should stop the symptoms if it was seizure-related. Lo and behold, the symptoms all stopped and her spinal fluid was clear. The neurologist mentioned something about a very rare type that had these kind of symptoms, but she had never seen it before nor knew anyone who had; however, I found out that when she completed the paperwork on all this, it was not confirmed that this was seizure related. (huh?? I was confused)

When the symptoms came back again several months later, we saw another neurologist (hers was on sick leave) who did all kinds of referrals. We saw an audiologist (my daughter talks excessively loud - which I figured is due to my being hard of hearing) who confirmed her hearing is fine and there were no issues in that arena. The ENT looked her over, asked some questions and then I found out later wrote down that she was faking it because she didn't want to go to school! ( I was livid! She lies about her symptoms in order to go to school and is upset she misses out ... how DARE he say that without even posing that question to me for a response!! I told the neurologist that was garbage-talk next time I saw him, when he told me what the ENT had written down.) We had another EEG done while she was at a follow-up in neurology and while her pupils were jumping, but they didn't see seizures happening, although I think it said that her brain still is prone to seizures.

We're on day five of this "episode": 30 minutes after she stands up (not just after she awakens), she gets dizzy (things are moving up), and/or off-balance, and/or double-vision (this usually doesn't happen right away), and sometimes vomiting (only two days out of this five-day episode). By 3:30pm (or thereabout), everything is better. I've tried having her eat as soon as she gets up, in case it's blood-sugar related; I've denied TV time first thing in the morning; I've had her stay where there was brighter natural light (shades open); none of these make a difference. I'll be on eggshells again tomorrow morning ... waiting for that 30-minute mark. Her next appt is Wed, five days from now, and I pray the symptoms will be gone by then. She's seeing an adult neurologist, because they didn't have a peds neurologist appt available until March.

Also, she was on Trileptal when she was four, but she shook from it, so we're now on Lamictal (I keep thinking there was possibly another med, but I may be wrong); maybe it is time to try a new med. Her school (IEP) wants to get her on ADHD medicine because she seems to have a hard time focusing in class, but I'm anxious about ANOTHER medicine in the mix, especially while this stuff is going on. Previously, she has been evaluated for sensory processing disorder and saw an occupational therapist (I think that's what it was), but that doesn't seem to be the case, either.

I'm so grateful for everybody's input - truly! Brainwavez - I am so sorry to hear you go through that ... and I am thankful that my daughter doesn't seem to be in any pain (except when she's vomiting). She's just learning to describe what she's feeling, so I don't know if she has any auras or anything preceding this. I think I've provided the important stuff. I'm just at such a loss. I will definitely look up that M&M thing - although I'm with an HMO so who knows if that will work with them. (And I'll see if I can work more protein into her diet, which will be a challenge, but worth it if it helps!) Everyone: Thanks again - so much - for your time!

[RobinN]

Marilee - I know that took you some time to write, but you have explained your situation very well. Sounds kind of like the rollercoaster ride that I have been on with Rebecca.

We are also with an HMO and it is the pits when it comes to chosing a doctor. Luckily ours has taken out of network doctors. We are under an adult neurologist as well at USC.

I must say I would run fast and furious from more meds. I can't even believe that the school is requesting that when you have been going through some many other medical issues. They must know that this would just complicate the situation. What do they want...her to sleep through class? Brother!

I am not sure where you are located in CA, but for your information the neurofeedback that Rebecca has been having is quite well documented to work wonders with ADHD.
Check out this video:

[Marilee]

I don't know much about neurofeedback, but that's something I can look into. I don't actually see a video on your post - it's just a big blank spot. Am I missing something?

Just curious, when talk of nutrition is mentioned, is this a reference to the kenetic diet or just nutrition in general?

I think I'm going to turn this off for the night - I'm drained. I hope everyone has sweet dreams tonight, including my precious one. I'll check back in a few days or so. Thanks again ...

[LivingFruity]

Hi Marilee Welcome to CWE! I can totally relate to some of what you must be going through. My 7 year old son was diagnosed with epilepsy because of complex partial seizures.

What you are describing, sounds to me like it could be related to her medications, but that's just my opinion.

We've currently found great success in treating my son through diet, nutrition, and natural therapies. I couldn't handle the list of side effects that came along with the anti-seizing medications. They seemed worse than his seizures, even as bad as they are.

I'm not referring to the ketogenic diet (neither is Robin). There's several really good discussions about nutrition in relation to Epilepsy in Zoe's Corner. Feel free to check out these discussions and jump in with any questions you may have.

I would also suggest looking into neurofeedback as was suggested by RobinN. It's been proven successful time and time again. I'm sure it would benefit your daughter.

[skillefer]

Hi Marilee! As a special ed. teacher, I'll tell you right now, that the school CANNOT demand that you put your child on meds. They can suggest it, but they cannot force it. If your child is on an IEP, then you can always speak to the case carrier, explain what is going on and that your child does have a doctor's appt. Explain that you do not wish to start any other meds at this time, until you get her current health situation straightened out. Explain that you would hate for the med for ADHD to cause a bad interraction. The case carrier will most likely back you up. I have kids on my case load whose parents refuse to medicate. And that's ok. It means that I have to make other accomodations so the child can be successful, but that's what we're paid to do.

You could always try the old non-med trick for ADHD. On one of your child's days off, to help her focus, give her a half cup of coffee. (with creamer and splenda...but no real sugar..) If it works to calm her down and keep her focused, and you don't notice any interactions with her meds or negative reactions, you can use that instead of meds. Heck, I keep a coffee pot in my classroom for exactly that reason. If it doesn't work, then no worries. I say to do this when she is not at school, because if she is going to have a bad reaction, then you want her to be where you can notice. The coffee trick is an old tool to help kids with ADHD who aren't on meds. It doesn't work with all kids, but for those who either were successfully on ritalin, or who would respond well to ritalin, it tends to work well. Usually, for kids between 11-16 yrs, we suggest a whole cup of coffee. Since your daughters around 9, try a half cup.

[RobinN]

I would be careful with Splenda:

http://articles.mercola.com/sites/ar...timonials.aspx

Personally, I think this might be a better route to go:
http://www.eeginfo.com/addsolution/

[flinnigan]

Be careful of caffeine to. Too much can trigger seizures and migraines.

[skillefer]

Quite true...splenda and caffeine can both cause issues. That's why I suggest that it be tried over a vacation of some sort where you can observe the bodies reaction, as well as saying to start with a half a cup.

[garfieldlea68]

When I was 17 years old I had a Coca-Cola. The next day I Had a Seizure My Doctors thought it was caffeine (at that time and took me off all caffeine) I haven't had another one since just in case

[epileric]

I would be careful with Splenda:

Stevia is a sweetener I use with no known harmful effects (yet)

[Phidippus]

30 minutes after she stands up (not just after she awakens), she gets dizzy (things are moving up), and/or off-balance, and/or double-vision (this usually doesn't happen right away), and sometimes vomiting (only two days out of this five-day episode)

You might want to have her checked for Basilar Type Migraine. This is rare and most often happens in young women. Attacks can happen when a person stands or moves. If symptoms are persisting for up to 6 hours, this is more likely to be migraine than epilepsy.

Aura consisting of at least two of the following fully reversible symptoms, but no motor weakness:

dysarthria (impairments or clumsiness in the speaking of words due to diseases that affect the oral, lingual, or pharyngeal muscles)
vertigo (sense of spinning)
tinnitus
hypacusia (impaired hearing)
diplopia (double vision)
visual symptoms simultaneously in both temporal and nasal fields of both eyes
nystagmus
ataxia (incoordination and unsteadiness)
decreased level of consciousness
simultaneously bilateral paresthesias (abnormal or unpleasant sensation often described as numbness or as a prickly, stinging, or burning feeling)

Followed by headache and/or vomiting.

Basilar Type Migraines can be very scary. They can even cause temporary blindness, but the symptoms are scarier than the actual disorder. Anticonvulsants are not going to treat her symptoms - Verapamil is the drug of choice for this type migraine - triptans and beta blockers are contraindicated.

Does she usually feel better after she vomits?

The only epilepsy that comes close to the same symptomology is Occipital Lobe Epilepsy, but she should be responding to the Trileptal if this were the case.

[RobinN]

That was interesting reading.
When I was having my migraines I always felt better after I got sick to my stomach.
Mine have disappeared when I started taking ionic magnesium.

[Dutch mom]

Stevia is a sweetener I use with no known harmful effects (yet)

Hi Epileric,
We do use the liquid stevia for our son who's on the ketogenic diet.

[epileric]

Hi Epileric,
We do use the liquid stevia for our son who's on the ketogenic diet.

To be honest I"m surprised it's not more popular.

Here it seems you can only find it in health food stores. Most grocery stores don't seem to carry it.