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    Take-home Portable EEG
    marydallas posted:
    Has anyone had experience with these portable EEG systems that you wear at home for several days? What did you think?
    dancer86442 responded:
    Hi marydallas,

    I had one done a few yrs ago. I was Impressed! Why? All my regular EEG's were Normal over the past 30 yrs. The Portable Detected seizure activity. But, different then what I expected. Seems I have Another Seizure Type in my sleep. Seizures that have no Physical activity. My Doc called it 'Wavy Line syndrome' , but, neglected to tell me it was a seizure. I learned, like I learned almost everything about EP, here on the Net.
    Unfortunately, it did not pick up my gran mal/convulsions or simple partials. But, I was still n my meds & those seizures have been controlled by meds for over 25 yrs,

    I put a nice scarf over mine. Put the wires inside my shirt. Even went to stores & no one took note. To remove Gel: Use olive oil or veggie oil mixed half & half w/ Conditioner. Leave it on for a few minutes. Comb w/ fine tooth comb if you note flakes. Hugs!

    Love Candi
    saxofone1 responded:
    Hi Mary,

    I had about five years ago. As usua for mel, the results showed no seizure activity. That didn't surprise or disappoint me. I think frustrated is more my feeling. My seizures love to hid from those tests.

    Carrying the pack around and looking like an experiment wasn't a bother to me. I simply did my own thing. Took the stares, looks of concern, etc. If people had questions, I answered them. My problem was finding a comfortable postition to sleep.

    I like Candi's idea of the gel. Never thought of it. I simply washed my hair until I was satisfied. I wear my hair a cut above bald.

    Good luck with it. Let us know how things go.


    I took pictures and sent copies to a few past students in Mpls.
    They loved them!!!!
    saxofone1 replied to saxofone1's response:
    Hi, Mary,

    I hope you understood all my typos. Please ask questions whenever you have one.

    hula_dancer73 responded:
    nothing much just didn't go in public with it so I could be stared at.

    Was a pain to sleep wtih other than tha it was not a baother. I have had htem mpre than one time.

    I live on O'ahu in West Honolulu-GO UH Warriors!
    ktexas1026 replied to hula_dancer73's response:
    I'm so glad to see this conversation/thread, I just hadn't had an opportunity to ask about this. The doc wanted ME to do the ambulatory EEG (although it supposedly will include a video camera too...very weird), but neither the in-patient version OR the at-home version sounded do-able to me at the moment. But I keep thinking that I WOULD like to know for sure if mine are actual seizures or not. But from what everyone here has said, & my doc too, that even a negative EEG doesn't prove you're NOT having in the end, the reason I opted NOT to do the VEEG for now was b/c if it's negative, it still doesn't prove anything. I need ANSWERS! LOL But I'm glad to hear of other people's experience with it, since I was curious how difficult it was to deal with.
    ktdid70 responded:
    I can say I have had 4 since last october and another next week. They are a little uncomfortable to wear all day for 4days, but not really much more than wearing a few barretts iin your hair continuously. I wear a bandana over it when out of the house mostly to just keep the wires out of the way and when I sleep because I have a cpap mchine and find it more comfortable, otherwise I just wear it w/o to get air as the bandana makes me hot.
    You get used to the wires and bag esp if you put it around your waist like a belt. it also worked for me to sleep(the one I aways get has a cover over the wires so they dont gettoo tangled which is nice.

    I dont mind having that many by now, it is more of an inconvenienc for me now, but they have shown seizure activity that the short ones they did yrs ago when I first had seizures did not so the neuros back then thought I was faking them even when had to go to the ER. It has even shown one or two thatI had when I was asleep. That helped me feel that something really was wrong not just in my head like the other drs thought I had.

    The neuro I have now is really concerned that I keep having them(more than other neuros) and that the eeg shows them more now as well as the MRIs I have had show some kind of shadows that we dont kow if are related, but were not there yrs ago either. Now that I am having hand tremors he is doing another to see if my seizures are getting worse or causing the tremors..
    If this is your first dont worry it doesnt hurt like I said any more than having barretts in all the time.
    Just relax and dont worry yourself too much about it, it will be over before you know it. And may settle some fears over what might b happeniing.
    msreif replied to dancer86442's response:
    Hi, marydallas,
    I don't know why I haven't heard of the portable seizure detector! No one has suggested it to me. What I am afraid of is that it would show I am having seizures and I won't be able to drive again! I know it's not a good way to think, but my family is so controlling when I have a seizure.
    dancer86442 replied to msreif's response:
    Hi msreif,

    Thank You for your response. I had no clue about portables either. I'm sure Glad my New Neuro (assistant neuro) suggested it.

    Personally, I Would want to know if seizure activity of Any Kind was present so I would know Not to Drive! DRS never told me Not to. I just Quit due to Common Sense. I sure as Heck didn't want to be responsible for involving others' in a wreck. I would also want to Know so DRS could assess the situation & increase my meds if needed.

    When was the Last time you had a seizure? What Kind of seizure activity do you have?

    Love Candi
    hula_dancer73 replied to dancer86442's response:

    IHave had several ambulatory EEGs and only one brought up bad sz activity.

    The last ambulaotry EEG I ahd was about 9 months ago and it showed NO sz activity. My neuro said that it either meant my meds, at that point, were working, or the EEG did not pick it up. THen he did another one 6 monhs ago and more sz activity showed.

    I live in HI so I fly in to to the mainland see him every 3 months. He does NOT want anyone else taking care of me adn the same with me. it is a 6 hr flight. Sometimes a lay-over, sometimes jsut a switch.

    I live on O'ahu in West Honolulu-GO UH Warriors!

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