See All
Preferences
My Communities
My Discussions
My Email Digests

NancyView Thread

EPilepsy can not be "cured" at this point in time. Some people can be "sz-free" with Brain surgery, but are not "cured".
when I was in an EMU or an Epilepsy Monitoring Unit back in 04 they treaed me very poorly and said I did not have anytying going on when in fact I did have 2 szs. One on a wednesday 3 days into a 9 day stay and one on a saturaday and went home on Tuesday.
BUt when the current neruologist of 6 years ran his own tests adn put me back into the EMU and he got 2 staring szs the very first night and over the next 3 days I had 3 MASSIVE Complex Partial szs all of which had to be stopped with IV Ativan.
I was accused of "faking" them by the first 2 neurologists I was so mad at the first one I was seething.
We were supposed t o hae an appointment at a sertain time and he never got to us on purpose and did things like take is grown daugter to lunch--made people wait longer for their appts, made me wait 2 jrs to get me back there, meanwhile I would be having szs waiting and would his staff come and help me, nope, they stood in the office and watched but did nothing about it so after a 6 months of that I said pooey to that and left and went to this epileptologist who was too full of himslef and had an ego bigger than his head and thought he knew everything. He did not! When he told me I was faking it, I lost it and left. adn got referred to the one I have now. Very caring, and listens to me, and answeres my questions, spendds time with me and all that.
He is VERY GOOD!!
Took 10 years to find him but maybe the wait was menat.
al my EEGs have come back abnormal exceport for the last 2 that came back normal after 10 years of junk. That was done 6 months ago.
Ansiety attacks can look like szs and vice versa but since you had an EEG that provved positive for epilepsy then he needs to see it or at least that report so that argument stops.
IT is not right.
Trained people like him do not need to be down gradeing you you have enough on your plate.
Good luck on your wuest to find a new couselor
NancyView Thread

SZs that last that LONG are called staus Epilpticus adh need emergency/medical help rite away or it could kill you.
Most szs do not last all day un less they are all broken up with minutes or hrs in between.
Auras are Simple Partial szs and usually are warning szs that something else bigger may/ or may not arrive.
Another thing fit and myoclonic szs do not go together in the smae sentence. "fits" are feferred to Grand Mals or Tonic-Clonics and myoclonics are myoclonics.
Myo means muscle and clonic means jerk. so you get muscle jerk, Tonic means stiffness and clonic means jerk, sio you will get stiff jerking.
YOu need to see a PCP that can/will referr you to a good neuro toget you back on some meds or me that can help with you szs and get them back under control. If that one doesn't then you will haveto ride what Candi referrs to the "med-Merry-go-round" or jsut the neurologist doing the trial and error thing to see what works and what dosent.
Mine is t aking my vimpat away after 2 years becuase of the s/e and putting me back on Topamax after 3 years of being off of it. HE will finish phasing out the Vimpat the next time I see him. Then I will be taking 3 mgs of Klonopin, 600 mgs of Lamictal and 200 mgs of Topamax.
I haveto fly in from Hawi'i to see him becuase I can and the insurance will pay for it and I dont want anyone else to take canre of me and nether does he.
IT takes 6 hrs to fly there but worth becuase I get to see friends and my mom.
They all live in Phoenix.
Anyway that is besides the point, ethe point I am making is get your butt to a neruologist and get on something so you don't have to suffer like you are.
I had a T/C last night that lasted 3 minutes and I have slept most of the day shich is VERY rare for me becuase I have VNS implant in my chest with a magnet that you swipe across it and it either stops or slows down szs. it did nither last night and the sz continued and now I am comepetly exhasted from it.
I wich you the best of lucck finding a neuro and getiing help eith meds.
NAncyView Thread

on the 12th I went to see my neuro ( am back in Hawi'i) and he put me on Topamax and isincreasing it little by little and when the Vimpat hits 100 in the am and 100 in the pm the Topamax will be at 200 mgs to maintain and stay at the dose. 100 in the am and 100 in the pm indefinaltely.
He is killing 3 birds with only one stone.
It will help me lose weight, prophylactic migraine treatment and sz control all rolled into one thing.
I did well on it before, but went from a 14 to a 4 in pants size. But got to wear alot of things that I was not able to wear in a very long time that I wanted to wear that I couldn't,
PRoblem is that the the vimpat is still at 100 in the am and 200 in the pm and the topamax is at 50 in the pm. It is causeing a little bit of trouble that is unecxpeted. Is it the add-on of the new drug? I have taken it before so shouldn;t my system be sued to it even though it has been more than 3 years since I alst took it?
However I had a sz tuesday night the night I saw him. I was already back in HI by that time.
Did the topamax casue that? The VNS was checked but not changed. The Lamictal was also left alone at 600 mgs, so was the Klonopin at 3 mgs.
I do not like being on FOUR AEDs at ONE time along with the VNS, but he told me he has several pts that take more than me and have the VNS. I looked at him funny and he said he wasn't kidding. I just can not imagine that. 4 is bad enough but more than that?!
Then next time I go in in 3 months he will remove the rest of the Vimpat.
I can see why Angie did not like the drug. It was great in the begining but got worse the longer I took it and the s/e picked up too.
Thanks for the heads up about your experinces with it angie, That is what made me s tart talking to my neuro about it months ago.
I took in the book I am reading with very large print and the kind of word search puzzles I have to do that are VERY large print that I have to do in order to see so I do not have to close one eye to see or hold ot really close to my face. The other s/e were also getting to me as well. THe sleep thing was reallybad.
HE had me taking it 4 times a day 4 hrs apart from each other. So before I could recover from the first dose that made me sleep I took the second dose and continued to sleep and so on untill the day was over. Drove Jasyn nuts becuase all I did was sleep mpost of the day or was really groggy from it. It is also a Schedule V controlled Substance and that bothered me becuase I did not want to be hooked on that crap. Doc did not like my thought on that so that is another move to remove me from it.
NancyView Thread

I have had that happen to me where I couldn't keep things down as an adult and had to ahve 12 different meds thru IV. Only 3 of them for szs. They rest were for diffeernt problems.
That is the only way she will get the med even if you have to go every dayuntil she can keep things down.
I read up in my RN drug book and all my meds are injectabel thru IV with the exception of one, and that one can be lived with out.
TRy this and see if they can or are willing to do that. The longer you woat to see what happens with her the morse dehydrated she will be come.
GO back to that ER and if you don't like that one find another one but she has to have them injected if possible.
NancyView Thread

There is NO Mardi Gras in HI but there was when I was in Louisiana until I was 30, then moved to PHX for 7 yrs then to HI for almost 3. it will be 3 years this year in HI. PHX has parades and that but not in the town I am from. You want to do that you haveto go to the East valley to get that type of thing.
So HAPPY MARDI GRAS!!! LAISSE LES BONS TEMPS ROULER!!!
In Cajun-French that transaltes to LET THE GOOD TIMES ROLL!!
I have OVER 100 DIFFERENT beads and about 20 dubloons and other assorted things like masks and that type of thing.
Today I s till celbrate it with our old tradations like eating potato pancakes with sour cream on them. Tastes so good.
Well that is all for now, has notrhing todo wi th EP but I just thought I would say that to you since today is Mardi Gras.
NancyView Thread

it is used as a last ditch effort to shorten szs, their freuqency and severity.
I have one and I am still alive to talk about it. I too have Complex Partial szs. I am also on 3 drugs at high doses BEYOND what the books say about the normal adult dose. I do not know aobut levells for kids, though.
I live in HI and fly in from O'ahu to PHX where I used to live and he takes care of me.
I used to have 10-12 szs a day if not more. The VNS has cut them down to 3-4 a month. I do not know what the drug dosages are for kids is.
good luck on your hunt for a surgeon adn a way to treat his szs.
I have 3 lesions on my left Temporal lobe and can not be operated on becuase they are too close to valuable structures. so they had no choice but to do the VNS.
bring that up at his nest visit and see what his neuro saays.
Good Luck Again,
NancyView Thread

YEs the surgery for wire removal is out there but it is risky becuase i t can cause alot of dmamge and it is only done if needed. Most people will have it turned off left it or taken out with the part of the lead that also gets replaced when the VNS gets replaced.
The VNS has a regitery # and the 6 inch part of teh lead also has a registry# as well. THe model also has a # as well.
I have model # 103.
removal of the lead wiring casues damage to the nerve which is why theiy are reluctand to take it out. Alot of pealing and probing to get it off and uncoiled. So typically they just leave it in there.
I Have only read about 2 or 3 cases in Neurology Now about having the lead removal done. one person had to ahve the ne rve severed to get it off adn now has part of her nerve, nad the other one only was able to have ything out but the anchor.
That is why it is so risky.
HI has great wea ther right now. In the upper 70s to lower 80s.
I am lovin it.
While I wauch my relatives in NC, MI, TN and Canada freeze their butts off.
as for haylen's wuestion from a long time ago about do people in teh tropics drink hot chocloate and I never answered but yes we do. We pretty much do the same things you all do, with the exception of drinks, hx of HI, schools from K-12 adn then there is UH (univeristy of Hawi'i) main brainch on O'ahu on the other side of downrtown, and then branches all over the state alont wi th comm colleges.
Maui has a branch of UH and several comm colleges, Kuaui Has a Branch of UH and 2 comm colleges. College is do en like it is in PHX. and grades K-12 are done ver ydifferently.
High school has 2 short days and 3 longs days. middle school is the opssiate 3 short days and 2 longs days.
K-6 also works on a different schedule as well. K-2 is all short days and 3-6 is also split up with the time as well.
My daugher constantly complains aobut it. IT messes her up but she still keep her grades up. She liked going to school from 8-3. everyday of the week.
NancyView Thread

I was just curious as to headaches being szs in and of themselves?
I get alot of headaches and was wondering.
When the headache is BEYOND Migraine and can not be controlled with anything else can it be a sz.
I do not knwo what else to say about this other than can szs be heachaches or Vice Versa?
I do swipe myself and sometimes they go away and sometimes ir does not.
So that is wy I am wondering this becuase the ones that get swiped tend to go away but not alwasy do get alot of relief and the oens that do not repolsnd to it etc.
Candi,
Inanswer to your questions about the VNS being permant or not depends on the patient with it
THe o ther day I called and asked him in person on the phone rather than play the game called call up and talk to the MA and she talks to him then she calls me. So I wanted to talk to him and asked about wehter or not the VNS is permanetn or not, and he t old me for me it is for me. That the only time it will come out is when it gets replaced. Yes it can be shut down or removed, There is a riskysurgery that can remoce t he wiring but it can do some sefious damamge to the lsft Vagus Nerve. They try not to do that and just take out the implant and part of the lead.
NancyView Thread

I live in HI now, but when I was in PHX my mom was using some latex paint to paint something on the house and I had a Complex Partial sz in the garage wehre she was mixing up the paint. minutes later I had another one.
She can not use tha t ype of paint whenever I am around.
Neither can my husband, Jasyn.
When I went with my mom when I was on the mainland to her hairdreser I could smell the nails being done along with the permanent hair solution and dveloped a NASTY Migraine, which later threw me into a sz, but not in there thank God!
So I guess you can be bothered by strong smells.
I am.
Perfume is another one that does damage.
I ahve broken bones having szs weither they are partial or T/Cs. I have to have Jasyn sitting on the toilet seat while I am in the shower or my 17 year old daughter who has epilepsy herself.
No it is not thta common to have one szs after another or one long one, but I have been known to do that. I will have 3 back-to-back szs with in minutes apart and then to the ER after that. i hate going to the ER and never call the medics unless I need them.
I lost a daughter at 13 to epilepsy. She had a rare form of JME that was totally out of control and no one cold get a grip on it to stop it in anyway. JME is Juvenile Myoclonic Epilepsy. Starts in puberty but hers was early on-set.
My 17 yr old daughter has Full Tonic-Clonics (Grand Mals).
I have TLE in the left Temporal lobe with 3 lesions near vialt places in that lobe so surgery was not an option for me and now i have a VNS.
I am not going to run on about that. That you can google.
www.efa.org has some VERY good material about all the types of szs and syndromes associated with epilepsy. IT also talks about alternative treatments rather than surgery. like certain diets and the VNS.
I wet the bed from a little baby until I was 16. neuro now thinks I have had it all my life but never really showed that much and was never picked up on by any doctor until 2003 when I had 2 EEGs 2 weeks apart that were sleep deprived and aactivity showed up on the EEGs.
I take 3 mgs of Konopin, 600 mgs of Lamictal and 300 mgs of Vimpat (just got the dose cut in two so now I have from 600 mgs to 300 mgs.) When I fly back to the mainland a few days before my appt he will take it away and phase something else in with it called titration and then will try something else.
I wich you luck in getting everything under some control and take care. Keep talking to Candi she had a very lot of knowledge on all this.
Nancy
I live on O'ahu in the Waikiki district of downtown Hoholulu.View Thread
Women's Health Newsletter
Find out what women really need.
Other Epilepsy Information
More Related Communities
The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.
Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
Health Solutions From Our Sponsors
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.



