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    EMU again
    hawiian_girl11 posted:

    Hi all,

    I do not know why, but here I am back in the EMU this time in Hawaii, in Honolulu in The Queens Medical Center.

    My neuro in Sun City whom I have had for 7.5 yrs called the one I have in Honolulu for petty neurological stuff that I have locally, and told him to put me back in.

    Don't know why. Everything is still the same. Same sz pattern, same sz frequency, same szs. In fact, the Fycompa is helping a lot. The VNS still has to be replaced. That got checked last week. Next week the current gets shut off and I go in for a few days as the medical clearance is on the 17th. I go in on Sunday and will be there until Wednesday and will be released then. THe medical clearance for the surgery is on Thursday and I have to have that here in Honolulu as the order has been faxed over here so I do not have to waste another day flying to PHX.

    Why would he be putting me back in the EMU again?

    This is stupid.

    Any ideas?

    Any suggestions as to what you may think as to why.

    Mahola, ( thank you) in Hawaiian

    hawiian_girl11 responded:
    I am not in the EMU yet, I just said that. I do not go in until next week I meant t o say hear I go aagain back to the EMU. Aorry for the misunderstanding.
    dancer86442 responded:
    Hi Nancy,

    It's possible that Your 'Sun City' Doc wants to be sure there have been no changes w/in your brain. Even though your seizure status remains the same. In fact, that may be Exactly Why he is insisting on monitoring you again. Hoping to find out Why you continue to Have them.

    Nancy, you are contradicting yourself! Seizure activity remains the Same, but, Fycompa is Helping?? I do believe your 'Sun City' doc is Very Concerned & hopefully, the tests will set his mind at ease. Or Not! You may think it's 'Stupid'. But, I say He is a Smart Man & would not Insist if he didn't have Reasons! The 2 reasons I just mentioned are enough for Any Dr worth his money to be concerned about!

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    hawiian_girl11 responded:

    I go in tomorrow at 7 am Hawaii time.

    I will be released on Wednesday.

    I will take my laptop so I can write to you and stay in touch with you.

    I will let you know things as they happen.

    I have to have 36 electrodes on my head and one on each ear something that I never had in the other 2 times.

    I guess every place is different. I guess that this is how they do it here.

    I am kind of glad it is here in Honolulu where my family is so they can be with me rather than having had to have flown back to the mainland to be alone with just my mom and her hectic schedule.

    I hate this I do not like this and did not want a 3rd time in here.

    04, 07 and 14.

    talk later.

    dancer86442 replied to hawiian_girl11's response:
    Best of Luck, Nancy. I know it's not where you want to be, but, it's is where your Dr needs you. I have never heard of or had an ear attachment. Interesting. Stay Strong. Hugs

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    hawiian_girl11 replied to dancer86442's response:
    I never heard of them either and asked that I not have them because of my glasses and they agreed that that would be a hassle. So they removed them. They had something to do with swallowing. THe movement made by your jaw back there can move your earlobes so they attach electrodes there, so they can monitor that as well.

    but they do put the ones under your eyes to monitor your eye movements like they did back in Phoenix.

    the last places I was in did not allow jewelry, and here, I am allowed my medicalert bracelet, watch and wedding rings. not allowed at the other 2 places for some reason, here I can have them.

    They shut off my current to my VNS and gradually took away my meds.

    My neuro changed the dosages on 2 of my 3 meds on the 9th.

    He took me down from 800 mgs of Lamictal to 600 mgs and went up from 4 mgs of Fycompa to 6 mgs. Topamax remained the same.

    THen they gradually took it all away. Interesting enough because Fycompa is a schedule III controlled substance and will cause withdrawl symptoms. another excuse for them to look at szs.

    My husband and daughter were camped out in here all morning and they just left to go to Waikiki beach to go swimming and eat somewhere downtown Honolulu near this hospital which is about 10 milies from where we live.

    Honolulu is a big city and we live in the city proper not a suburb.

    in a nice section of town not in a run down spot and there are plenty of those around.

    Sorry for babbling on about nothinh, but there is absoulty nothing to do but talk. I have to use the little girl's room and it will be a chore getting there as I am in a cast and it is a non-weight beaing situation.

    Tlak to you later I am sure of that.

    dancer86442 replied to hawiian_girl11's response:
    Well, since you are bed-bound, I can only Hope you give them docs a 'show'. Hope everything is OK w/ you this morn. Hugs! Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
    hawiian_girl11 replied to dancer86442's response:


    I had 2 szs. same thing my regular neuro in Sun City got.

    Complex partials

    why do they keep repeating this stuff and I keep getting the same things. OVer and over.

    Nothing has changed. The same sz type. Different city different state same szs.

    Not as many since the meds have had dosage changes and the Fycompa added.

    I just do not get why they keep repeating this.

    Oh, well,

    bed time.

    Talk later,

    dancer86442 replied to hawiian_girl11's response:

    They repeat tests, as I said b4, cuz, they want to be sure there are no changes in your head/brain. Count it as a blessing, that there Isn't. The only way you could 'escape' these tests is to quit seeing your Drs. Which in your case, is Not Possible! This test isn't the first & it sure as Heck won't be the Last!

    Personally, I bet there are Lots of People w/ Ep who Wish they had a Dr who showed Half as much concern as your Drs Do! I can't count the # of times on this site & FB that I have heard people Complain that their Dr won't listen or just doesn't care! PPL who Want to be tested, but, are refused testing. For whatever reason! If I lived closer to Sun City, I would go see your Dr in a heartbeat! And I wouldn't Care how many times he wanted me tested. I would be relieved that he would want to! When I lived in Dallas * went to Parkland, Drs would do an EEG once a yr. Here I am lucky If I get tested Period. And an EMU has Never been suggested!
    To you it's a 'pain in the arse'. To me & others', it would be Awesome! Be Happy that nothing Has changed! Because that really is Good News! Lots of Hugs.

    Love Candi
    Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.

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