Epilepsy Community

Hello Mom,

Have the DRS cheked her Hormone levels Yet? This is a Good possibility for seizures. Chek Resources for Info on Catamenial Seizures. Next Start a Daily Journal. More Info under Tips. Next, Start teaching your daughter about EP. It will help. I hope. If not, then sek Counseling. I know a young lady whose Mom did that. at age 14. the girl went on to college & is now a Firm Advocate for Ep.

Worried about sleep seizure? Start searching your yard sales & thrift stores for a baby Monitor w/ Video/sound. It wouldn't hurt to have a spare in the bathroom, also. Consider Removing doors. If she seizes behind closed door she mite crash in front of door & prevent entrance. Go creative hanging something over the door. Or install the new Magnet Screens?

Another solution. Contact the nearest Epilepsy Organization (Link to efa.org in Resources will help you find one in your State. ) Attend if possible a Live Support Group w/ your Daughter. The efa site has a teen support group On-line, too. I believe Facebook, mite have, also.

Hope this helps.

Love Candi

Thank you for the info. They have done blood work,eeg ekg,ctscan,mri and sleep study. I have asked about horemones because she also hasn't started her period and get told that isnt a concern..... We go back to neuro thursday so I will bring it up again. We also go to the cardiologist next week to rule out any heart problems. Her first one in March she was in the bathroom following a migraine so they kinda passed it off as it was caused by the migraine. The one this week she was in the living room and no migraine. She hasn't had a bad headache since the first seizure. She is just worried and affraid to be alone. I know I have to let her live her life but I am affraid also.

again thanks for any info!
I'm just worried and confused
Crystal

Hello Crystal,

I totally understand your worries & confusion is normal, too. Epilepsy is a Leading Disorder & soooo few people, including DRS! know so little. It is, basically, up to those afflicted (hate that word) to do their own 'homework' about All aspects of Epilepsy. From Types to triggers to drugs/treatment & possibly alternative treatments. I just read about an 'old'/'new' alternative. Coconut Oil. Touted to be a 'cure' for Alzeihemers & possibly,. Parkinsons, Epilepsy & other Disorders. My comp has been crashing as mentioned B4, so I haven't been able to save it to my favs yet. So, Do a Google Search ( I believe it was posted on CBS News?? ) & I will try to post the link later on. Definitely will have it added to our Resources. I have already seen several responses to the article on Facebook. 1 Lady has claimed it beneficial for her. But, as w/ all treatments it would be 'trial & error'. In our world "What works for one, may not work for another." But, I do believe coconut oil would be safe enough to Try. Until Drs come to some sort of conclusion.

As for DR who ain't concerned about her Hormones. Tell him to Bug Off & seek another Opinion! That is not Rite at all! Especially, when he has run tests w/ no results. MRI Clear? GOOD! No Cysts, tumors or other abnormalities. EEG's : Very tricky to catch seizures w/ some people. Either seizure activity isn't occurring at time of test or the Focal Point (where seizure originates) is buried to deep in brain to locate. There is a New test that is better An MEG. Visit Epilepsytalk.com (Our resources has link & you don't Have to join to read the articles.

I know you said she hasn't had headache/migraine snce first episode. But, Researchers Did find a Link between seizures & Migraines/headaches. So, discuss this w/ your daughter & keep track of future problems. Use the Search Tis Community Tool Again. I have links posted in previous articles & there may be some in Resources, too. Search mite be easier.

Mom, Let her know She isn't alone! Not w/ what she has or w/ what she is feeling. If she has concerns that she would like answered, please post them for us & we will give her more info. Plus support.


Summer Camp Logo for Epilepsy: It Takes Brains to Have Epilepsy. Another article Phylis has on her site. Famous People w/ Epilepsy. Past & Present. Chek it out. Some say even Joan of Arc had EP.

HUGS Love Candi

ok neuro says.. mynoclonic ep and started her on levetiracetam. She will be going into childrens for 24 hour eeg testing without meds.

Myoclonic seizures AKA as Drop Seizures. Our Friend Nancy, has those, along w/ other Types of Epilepsy.

A 24hr EEG in hospital? Are you sure they didn't say VEEG? Cuz, 24 hr EEG can be run at Home! W/ a portable machine! Maybe she is just going in to be wired up to the machine??? Then sent home. Possibility. :0

Helpful Hint: To remove the gel glue they use to attach wires to scalp, use an olive oil or vegetable oil/conditioner mix. Or just Olive/veg oil. Long hair may require a Fine tooth comb (lice comb works. Just time consuming) Also, leaves hair nice, silky & shiny.

What would you & your daughter think about an Epilepsy Service Dog? Want more Info? Some dogs can even detect seizures B4 they happen. But, they aren't trained to do That. Just how to Respond. Worth considering.

Love Candi

Hi Crystal,

I started having seizures a week before I turned 14. Wow, 37 years ago. All my early tests came back negative for any epileptic activity but the seizures were there. As Candi says, timing is important in regards to tests.

You mention the upcoming EEG. I've had them all. The 24 hour one Candi mentions is quite simple. Hook you up...program computer...leave for home or wherever...go back the next day and be disconnected. The portable EEG is very likely to catch a seizure since your daughter will be in her own enviroment doing her own thing. More relaxed than the standard hospital routine.

Please let your daughter(name?) know that she is not alone. And that it is okay to be scared. I didn't have the common sense to be scared.

Talk with her about everything this might involve. Ask us her questions. BTW, does she recall feeling or seeing anything prior to her seizures? If this is the case, these might be auras of impending seizures.

Keep searching for answers. Ask the doctors everything and don't stop until you have answers that you are satisfied with. And then, continue to ask more.

I have browsed amazon.com and found many books on ep for all ages. Check it out.

a new friend,
angie

Sorry it may be the veeg it will be in the hospital.My head was spinning when we left dr.office yesterday from all of the info. Her name is Heather sorry I didn't say that before. She never remembers anything about them. I just know that she has a blank stare/confusion before one.

She has very long hair and it was hard to get the gel out last time. Thanks for the tips.

Thanks again for all of the help,
Crystal

Hi Crystal,

Next visit, take someone along w/ you. And/or take a Recording device or Pen & Paper. It is sooo Hard to remember What's said or what to Remember. Even for those of us who have had Numerous visits.

That is Rotten that they are only keeping her 24 hrs. She Should be monitored Until a Seizure Occurs. Up to 10 days is the Norm.

Blank stare/confusion: If she does not respond to you or Noises around her, well, This is what is known as an 'absence seizure' &/or Simple Partial Seizure & yes, can be followed by other Types of Seizures. Epilepsy Faqs, Under Resources, has an understandable description/explanation of Standard seizure Types. It is, also, Normal, not to recall these ' Absence episodes'. Although Some people do recall everything during just a 'Drop Seizure'.

A previous member gave me that Tip. She no longer visits WebMD due to a Previous member. But, me & her became Friends on Facebook, last yr & have recently founded a New Group on Facebook. EP Land. She did me the Honor of naming the Group after My Home, here. Has your daughter Thought any more about joining a Teen Group? Plant the seed & watch it Bloom.

Love Candi

I'm on facebook and lloked there for ep pages I will look for ep land. I am checking into support groups for both of us.

<3 Crystal

Hi Crystal and Heather,

I'm sorry it's only 24 hrs. I have had in-patient veeg that has varied from 3-7 days.

In my early days of ep, I was diagnosed with the simple seizures but testing later showed them to be complex partial. Like you, Heather, I never recalled what was going on during my seizures. My brain simply went on pause. I had that blank stare also. As years passed, my siezures were followed by a period of confusion. For a while, I would be aware of this confused state. But as time on, I lost that recall also.

Heather, you're young and capable of handling just about anythin. Don't give in to this situation. Take it day by day, hun.
Any questions you have, DON'T BE AFRAID TO ASK THEM.

When you go in for your veeg, take something with you to keep you relaxed and occupied. Check with the hospital about laptops and such.

Best wishes to the both of you,
angie

Try Epilepsy Warriors (also have an on-line group. epilepsywarriors.org, made for kids w/ Ep & Parents), EpilepsyFoundations (various States & National Organization) Some groups you may find online (separate from FB, but, will have a Facebook Icon Just clik Like. WebMD is on FB, too.

Thanks Candi,

I'll pass this on to the teen and his parents who I emailed about earlier. I'm also sending you a "thank your" from his mom.

love you,
angie

hi my name is NAncy or hula_dancer.

I ha ve Drop attacks, myoclonic sz, COmplex PArtial, T/Cs.

I have to wear a helmet becuase of the drop attacks. That GETS OLD FAST!

Drop attacks(atonic szs) are when the person loses all musle tone and falls to the gromd or can get hurt thus the helmet. Myoclonic szs are small jerks or larget jerks that take place on one side or the otther. HEad drops are also in teh family of Drop at tacks. Complex Partial (temporal lobe szs) can cause many different symptoms from ,ild activity to a impairment in consiousness. THere are many symptomstoms for example smelling things that are not there tasting things that are not threre, de javu .feeling things that are not there non respiveness et c.

I have been in an EMU 2 times, have had a 24 hr Ambulatory EEG, 2 sleep-deprived EEGs, wakefullness EEGs, ALL Abnormal

THE seond VEEG my neuro got an eye full. I had 2 staring szs, and 3 major COmplex PArtials that had to be st opped with IV ativan. SOory about the spelling and mistakes I had a T/C in the pool last night and it has messed me up pretty well.

I have a VNS or Vagus NErve Stimulator whichi is a device impanted in your chest and helps to control szs. If you want to know more about tha I will be happy to answer your questions.

I also take Vimpat, Lamictal and Klonopin.

hula_dancer

VNS rep
O'ahu, Honalulu--Hawi'i