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Old 11-14-2004, 09:15 AM   #1
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rocket56 HB User
Angry getting NO help!!

Hello I am the mother of a 27 year old epileptic. She started having seizures when she was 16. They were mostly a spaced out stare kind of seizure. Then she went 6 years without seizures got off of the meds(tegratol) Got off ssi, got a job, had 3 lovely boys then during the last pregnacy she started having grand mal seizures. Some of these lately have been lasting for an hour straight. She is also seing a Dr. for severe panic disorder and depression. Well who would not be depressed if you have to worry about seizing in public. She has seizures every day. There is a shortage of neuroligists in arkansas or they just dont know what to do for her. She has been on all meds possible and none controll them. She is being weaned off keppra, and staying on lamictal.5 days ago she had to go to the hospital,via ambulance she had been seizing for over an hour straight. They said they saw no brain activity that would make this a epileptic seizure. And said it was a psuedo seizure. Has anyone heard of these? They for some reason cant get anyone to do the test (taking her off meds and test while seizing) Im at a loss here, her whole life is turned upside down. She cannot take care of herself, short term memory loss,Weight loss, She holes up at her house and wont go anywhere, Friends? ha they are all to scared and dont understand the problem they are gone. She cant take care of her children, I have one living here now. We have to find someone to stay with her so her husband can work. She was turned down for ssi again, now wait up to 15 months for court date. Why is this so hard to find doctors that want to deal with epilepsy? The hospitles here dont even follow protocal for a seizure.When u go there. I have gotten more help online than anywhere else. The last hour long episode she stopped breathing for over a minute. Has anyone had these problems? I dont know what Im looking for. Maybe just some one to talk to who knows what its like to live with epilepsy, and Psuedo seizures what ever they are.

 
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Old 11-14-2004, 11:42 AM   #2
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guineapig HB User
Re: getting NO help!!

rocket56,

31 year old male, right temporal lobe surgery to remove 'gliome' (age 7), Tegretol age 7-18. Medicine free and SEIZURE free age 18-25. Seizures came back again, ranging from abscence (the kind your daughter has) to occasional gran mal siezures. I work at a place with children with mental retardation/autism, so I'm NEVER left alone and always in the good company of people who I can relate to and THEY can relate to me (about having limitations, of course). Colleages have found me in blank stares, moving my hands around in continuous motions for four minute blocks (sometimes I fear what I might REALLY be doing/saying, for fear of some REAL embarassment, but my trustworthy colleagues have told me otherwise). They are very understanding to my condition, because they work around children, some of who are even WORSE off than I.

I have been renting a room from an understanding person who gratiously gives me a living situation where I can live simply and well within my means, until perchance 'the big one' (status epilepticus) occurs. I lack the benefit of having any substantive ties that others enjoy (support systems through family, etc.), but I keep going, as long as God wills it to be. I believe that, due to this person's age (relative to mine), he might not be around as long as I may, so I stash and save what I can, to hopefully be prepared if/when this support system (living arrangement) might fizzle out (due to my own health, inability to work in the future, or perchance something happens to my 'landlord'). Perhaps I might find another support system via the net (when I need it), who knows.

SSI? PLEEEASE! I forsee using up any reserves to support myself for a year or two (if/when seizure frequency/severity becomes such that work is no longer an option) while I hire an attorney to sue the Fed for SSI denial (then maybe, just MAYBE, I could sue the Fed for court costs, back checks, and damages done by their refusal, and recoup my expenses, right? Maybe, maybe in a PARALLEL UNIVERSE somewhere! ). They promptly TAKE from me, every time that I have a work check sent to ME, and a notice twice yearly telling me that SOMETHING is there, if/when I need it (they call it, 'social security'). But when I need it, they will fight me, tooth and nail, guaranteed! What to do? It might be the only possible avenue of support in the future, just plan and prepare (if you have the chance) for an uphill battle all the way, for it WILL be made difficult for you, despite the promises made! I, personally, have decided that there ARE generous and benevolent INDIVIDUALS willing to help, and internet might make for a good place to find them. The LOCAL Social Security Office OR the AVERAGE local church? FORGET IT, until other avenues have been COMPLETELY exhausted. They can send their 'there, there' words over deeds to the eternal hot , I'm tired of it! Acceptance of notions of 'fate' does not mean giving up! Do not go gentle into that good night, I say!

I don't worry about the 'image' problem w/ my seizures, so much as the safety issue. To that end I own no car and commute 8 miles twice daily to-and-from work by bike, and stay in GREAT shape, as a result. I HAVE had a 'passing out' twice on bicycle, fortunately one occurred by an understanding passerby (medical dog tags help, too!). I understand your daughter's situation of friends, many people would rather not be bothered with persons of our kind, out of misunderstanding or ignorance. Daily I see/hear the same kind of treatment toward students with autism, and if perhaps I can't symp/empathize enough with them, I can most ASSUREDLY relate. I, too, am a 'homebody', a reclusive person with no ties outside of work. Sometimes I think that it came from the 'doping up' on medication in my primary years that psychologically helped lead me into behaviors of a private person (abuse done to me as a child probably helped then, as well), who knows. I just thank God for the chance to add four years of college to broaden my mind enough to rationally manage the lifestyle that both my past and epilepsy has dealt to me, to learn to be a little more understanding to persons in plights. It happened within a relatively narrow span of time when I could think better, when I wasn't doped up on anti-sezure meds. Gee, I miss those days !

You might find better help on internet, better than any stonewalling HMO neuro like I have presently (good for, say, writing up drug scripts and using epileptic patients for DRUG experiments, but say the word, "MRI", or "SPECT", and they promptly tell you how the presence of metal from the previous surgery takes away those options. III say, take the metal out, seek out this elusive 'scar tissue' that he refers to as a cause, and 'zap' it with a gamma knife, and say NO to drugs, if I CAN!)

I, too, have considered pseudoseizures, as well, but if HMO neuros are not willing to investigate with VEEG's, ambulatory EEGs, SPECT scans and the like, then they surely will not consider any thorough investigation into pseudoseizures as a possibility, just the standard 'hit-and-miss' drug dance. My latest trick? When the doctor asks me how I've been, I start out with a sarcastic, rhetorical answer like, "I donno, YOU tell ME, doc! " It's proof in the pudding the fact that many examinations have been refused to RULE OUT differing possibilities! If their idea of 'ruling out' is to ask close-ended questions, then they are NOT being thurough!

Best wishes and blessings for you, your daughter, and your grandkids.

Last edited by guineapig; 11-15-2004 at 02:15 AM.

 
Old 11-14-2004, 03:45 PM   #3
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rocket56 HB User
Re: getting NO help!!

Thankyou for your response I appreciate you taking the time. It is comforting to know and talk to others with the same problems. I thankyou for the info, guineapig, We just feel so helpless. Please keep in touch. God Bless, and we will keep you in our prayers.

 
Old 11-14-2004, 07:55 PM   #4
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tkdmom96 HB User
Re: getting NO help!!

Hi Rocket,

Our daughter had E surgery back in June. She was diagnosed with Complex Partial seizures at the age of 9 months and is 16 now. She has been on 7 different meds and combos of those meds over the last 15 1/2 years.

It sounds as though to me you need to find a seizure specialist, and quickly! Start doing a search, on google, for the following:

Comprehensive Epilepsy Clinic

Comprehensive Epilepsy Program

Epileptologist or Epileptologists (they are neurologists who have extra training and have taken a fellowship in the area of Epilepsy. They are up on new meds and methods of treatment or testing) THIS IS THE TYPE OF doctor your daughter needs!

I know St. Louis has Epi's (short for Epileptologist) for children, don't know for sure about adults.

Check the : Cleveland Clinic in Ohio, University of Texas-Houston, Johns Hopkins in Baltimore, Rush hospital in Chicago, Froedert Hospital in Milwaukee (where we go), Mayo clinic in Rochester, MN. There could be others closer to you, but these are ones I know for sure of, from my research. I would recommend any of them. By the way, there is a comment here from someone who says negative things about Rush Hospital in Chicago and all of the people I spoke with and dealt with were very knowledgable. Can't speak for their situation other than they say they saw a "neurologist" which IS NOT the same as an EPILEPTOLOGIST. Extra training and schooling is involved for the Epi.

Through a year of testing our daughter was found to be a good surgical candidate. I understand not everyone will have that opportunity, but an Epileptologist will use the latest info to help find the best treatment for your daughter.

Will you have to possibly drive or fly to get to one (Epi), it is a definate possibility, but it will be worth your time and effort for the quality of your daughter's life. She has a lot to live for!

Any questions, don't hesitate to post again and again!

All my best,
Vicki
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Last edited by tkdmom96; 11-14-2004 at 08:07 PM.

 
Old 11-15-2004, 01:32 AM   #5
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guineapig HB User
Re: getting NO help!!

Hi Rocket,

If I might add to Vicki's comment, the National Institute for Health (NIH) and trials in particular (often leading into some of the same hospitals mentioned BY Vicki, I believe) is an avenue that I am exploring, mainly because ANY kind of doctor, be they Neuro OR Epileptologist, has blinders on if they operate within ANY circle of HMOs. They will most ALWAYS be short changing you (limiting your options, making you run through hoops before getting to where you might really need to be, in hopes that you DIE before they have to spend ANYTHING on you), by hook or crook !

Best wishes, and 'do not go gentle into that good night' !

 
Old 11-15-2004, 02:44 PM   #6
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tkdmom96 HB User
Re: getting NO help!!

And yes, find a Comprehensive E clinic that puts you right into the thick of things, one that doesn't beat around the bush or put you through "clinical trials" to pad their numbers before sending you off to where you should have been in the first place. You want a clinic/program that is patient oriented and not research driven. Our program was definately patient driven.

Keep us posted if you need more info Rocket,

Vicki
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 11-15-2004, 04:08 PM   #7
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guineapig HB User
Re: getting NO help!!

Quote:
Originally Posted by tkdmom96
And yes, find a Comprehensive E clinic that puts you right into the thick of things...

Vicki
I'm intrigued here, Vicki. I WAS under the impression that allowing myself to be used as an experiment would be the ONLY possible way to go SOMEWHERE beyond HMO stonewalling... Unless, of course, I won the lottery or was born into money ! Please, tell me MORE about what I might have overlooked !
PATIENT ORIENTED? ALL AVENUES SOUGHT? Heaven???

Last edited by guineapig; 11-15-2004 at 04:10 PM.

 
Old 11-16-2004, 04:19 PM   #8
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rocket56 HB User
Re: getting NO help!!

Thankyou all for your time and input, I am learning more online than anywhere else. They have done an eeg?? in the emergency room but they say it shows no epileptic activity. do they always show it? I dont know. What are these other tests you all are talking about? Should they have already done these. Many Many thanks to you all!!!

 
Old 11-17-2004, 07:19 PM   #9
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tkdmom96 HB User
Re: getting NO help!!

Hi Rocket,

I think your daughter would be much better suited to a 24-48 hour EEG, which she would have to stay in the hospital for. Many EEGs come back "clear" or "clean" when they are the one hour type. I would ask the doc for a longer one, in fact, insist on it.

Some of the other tests that I was talking about above would be for looking into the possibilty of surgery. They would be a PET scan, SPECT scan, fMRI, WADA, and VEEG.

She could possibly benefit from the SPECT scan though. That is a test where the patient is injected with a radioactive isotope during the start (very important) of a seizure. The patient is sent down to a special scanner and the brain is scanned in color. Reds, yellows, blues, greens, etc. The different colors show how glucose is being metabolized in the brain. If the scan shows a "slow uptake" (usually blues) in a certain area of the brain, it can be an indication of a damaged area, where seizures could possibly be starting or coming from. That was definately our daughter's case.

How is she doing these days?

Take care,
Vicki
__________________
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 08-13-2005, 10:28 PM   #10
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Re: getting NO help!!

I have a 4 month who has had seizures ever since he was born.Since the second day of life.He was sent to Arkansas Childrens Hospital in Little Rock Arkanas.They did MRI's....CT Scan....Head Ultrasound....X-Rays....Blood culutures.....Spinal Tap....EEGs.....and they told us everything came back normal but the EEG....and they said it didnt show seizure activity...but it did show abnormal electrical brain activity.He is currently on 1ml of Phenobarbital...1ml of Keppra.....25mg of Topamx....300mg of Perodoxine....and he is still haveing seizures.This isnt the first time he has been at ACH.He has been there in and out 4 times.We just got home Thursday from ACH for him having them again.He went a month free...then started having them again.We took him back to ACH{Fourth time now}and all they did was draw blood to rule out any kind of infection.The culutures came back fine{so they said}they found out he had a chest cold and was congested....didnt give him anything for that.....they gave him atibiotics cause one of the MANY DOCTORS that has seen him came back and said he had a slight infection....that explains the antibiotics.After we finally got out of the ER{after bieng in there four 7 1/2 hours they admitted him and he went all day and night with out one...then the next day they were going to send us home and he had one....one of the docs came in and told me that he was going to keep him til morning and if he didnt seize any more by morning then we would go home...if he did continue to seize....he would keep him longer and do anther EEG....well he didnt seize anymore and the doctor came in and said that we were going home and that there was nothing else they could do four him.We have been basically told this since the first time he was in ACH up until now.We are at the end of our rope.They have never been able to find out what is causing the seizures...what part of the brain they are coming from or what kind of seizures he is having.This is what he does when he has a seizure.....


IF he is asleep he will all of a sudden wake up and have this blank stare on his face like hes in a transe.His eyes will be big as golf balls....his pupils will be dilated and with in a couple of second to a few minutes his eyes deviate to the left his head turns to the left sometimes his head will go down like he is putting his chin to his chest...his arms and legs curl in toward his body like in a fetus position....he lets out a big scream or cry holds his breath....turns beat red....pale white...sometimes beat purple or blue.....then his whole body begins to jerk and twitch....including his eyebrows and lips....most of the time after its over he usually has either a wet or dirty diaper or both....they last anywhere from 5-10 seconds up to 10minutes long.He has turned blue and purple on me several time.After its over he is extremely tired and goes right to sleep....in return he cant/wont eat or take his meds.We have him on a Pulse Ox monitor cause his Stats drop extremely low...and we also have Oxygen at home to use to...and it is used and needed everytime...Post-Ictal stage is what i was looking for...{the stage after the seizure is over}When he was in childrens the second time...we asked for an APNEA MONITOR they would give us one...they said he didnt need it.I found out that APNEA means a pause in breathing and thats what he does.He is on Medicaid{ARk Kids First}and they wont pay for the monitor which is 125.00 bucks a month and....they wont pay for the Oxygen which is 40.00 buck a pop.We are at then end of our rope here.We dont know what elsed to do.My sweet son is having to go through this crap and doctors dont know what else to do for him.Try him on some different seizure medication.There are other things that can be tried and done.They just dont want to to do.Dont get me wrong...i love his Neurologist at ACH....he has been the best and the only good doctor since hes been in and out of ACH.Hes getting to the point like we are.He doesnt know what else to do.We dont know either.So if anyone has any advice or suggetions on or about anything please let me know.We are doing some research but dont know the specific things to research about and what to look for in an Epi doctor...ao any advice or suggestions just throw them our way.If need be feel free to email with anything at [ please read and follow the posting rules - no emails ]

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Old 08-14-2005, 02:28 PM   #11
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Last edited by IMNRVUS; 02-21-2006 at 09:06 PM.

 
Old 08-18-2005, 05:43 AM   #12
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jnjdav HB User
Re: getting NO help!!

Rocket,

I am very sorry to hear that she is dealing with this all over again. I wish that she would visit this site. She will find friends here that understand what she is going through. Something most of us can't find otherwise. I feel that this site will give her a sense of hope. Good doctors are few and far between. Try them all until you find the one that is right.

I can relate. I have three children and the seizures or fear of them has taken over my everyday activity. It is so hard, to raise children with this disability.

I worry about the seizures starting again during pregnancy. I have Catamenial Epilepsy. This is when the seizures occur on or before a period. They are all hormone induced. This makes me think, she might suffer from something along these lines. Does she take birth control or has she had her tubes tied? Sorry to be so personal but it all could mean something.

Nikki

 
Old 09-19-2005, 08:54 AM   #13
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ScorpionArt HB User
Re: getting NO help!!

Hi to all I am a 43yr man that is going threw the same in west Tennessee. I'm haveing seizures that I have to be taken to the hospital for. But now a dumb S.O.B tills me that they are Psuedo seizures ( Psuedo means fake seizures ) so do not let a doctor put this on you.
Scorpion

 
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