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McGill
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Cerindipiti said:
As Meetz pointed out, a focus MAY NOT be found. You may have a lower seizure threshold or tolerance to some stimuli which will provoke seizures in you, but not in others. An example of what I mean is a lack of sleep and its probability of causing you to have seizures. (I learned the hard way when travelling.)
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Cerindipiti
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You guys are all amazing! Thank you so uch for your support and especially your knowledge,including you Mike 
Have any of you had to go thru it. I know RobinN said her daughter went in. Did anyone else go in? What was their experience like? What should I expect? Was it useful? I'm concerned because they want to put me in hospital one week After school has re-started and Im nervous about losing the time. The information I have so far from my doctor is that I will be in for several days (3-7) and I know that I will have the electrodes connected to my head (I'm pretty certain it's for 24 hours a day, hence the hospitalization (even though I know they can do monitoring at home....you know what I mean). My doctor said that under normal circumstances they would stop a patient's seizure medication, or limit it but in my instance because I am having So many seizures he won't be doing that. This is what he told me. I also know from my research that I'll be amongst staff that are trained to watch for specific actions of mine and that I'll be limited to the space I'm in since it has to be video monitored. Thanks for the idea about the computer....not sure I'da thought of that. Okay i have to go get more cigarettes....since they started me on Keppra I am a smoking feign! It's horrible. Um...okay if I can be completely forecoming with you all: my concerns/paranoia is that maybe this doctor wants to do this for the money. I'm on Medicare and I have Medicaid. What if I go in and lose several days and they are like "o hey, guess what...apparently the Dilantin and Keppra you are on is just fine. I'm like thanks....yeah great. Or what if they are like "Dorian, we think you should have brain surgery...what if they want to remove a part of my temporal lobe...what happens...how long is the recovery...will I be the same?...Will I be able to remember stuff afterwards? What if it doesn't work? Okay, apparently I'm panicking....I just wanted to open up and use this wonderful forum as an area of an experienced sounding board....u know what I mean.... I am nervous but I had to speak fast because otherwise I forget. It's so funny... people know that when I get a look a on my face they know to stop speaking and let me say what's come to mind because I can't hold on to my thoughts for long. lol. People are so sweet. Off to get cigarettes. And please, no one tell me that cigarettes are going to kill me....I'm aware of this.....thank you for your concern though.
Have any of you had to go thru it. I know RobinN said her daughter went in. Did anyone else go in? What was their experience like? What should I expect? Was it useful? I'm concerned because they want to put me in hospital one week After school has re-started and Im nervous about losing the time. The information I have so far from my doctor is that I will be in for several days (3-7) and I know that I will have the electrodes connected to my head (I'm pretty certain it's for 24 hours a day, hence the hospitalization (even though I know they can do monitoring at home....you know what I mean). My doctor said that under normal circumstances they would stop a patient's seizure medication, or limit it but in my instance because I am having So many seizures he won't be doing that. This is what he told me. I also know from my research that I'll be amongst staff that are trained to watch for specific actions of mine and that I'll be limited to the space I'm in since it has to be video monitored. Thanks for the idea about the computer....not sure I'da thought of that. Okay i have to go get more cigarettes....since they started me on Keppra I am a smoking feign! It's horrible. Um...okay if I can be completely forecoming with you all: my concerns/paranoia is that maybe this doctor wants to do this for the money. I'm on Medicare and I have Medicaid. What if I go in and lose several days and they are like "o hey, guess what...apparently the Dilantin and Keppra you are on is just fine. I'm like thanks....yeah great. Or what if they are like "Dorian, we think you should have brain surgery...what if they want to remove a part of my temporal lobe...what happens...how long is the recovery...will I be the same?...Will I be able to remember stuff afterwards? What if it doesn't work? Okay, apparently I'm panicking....I just wanted to open up and use this wonderful forum as an area of an experienced sounding board....u know what I mean.... I am nervous but I had to speak fast because otherwise I forget. It's so funny... people know that when I get a look a on my face they know to stop speaking and let me say what's come to mind because I can't hold on to my thoughts for long. lol. People are so sweet. Off to get cigarettes. And please, no one tell me that cigarettes are going to kill me....I'm aware of this.....thank you for your concern though.They dont tell the truth. They tell what you want to here. Its all going to be fine- nothing will change- you will be the same after the surgery or you have a 75% chance of becomming seizure free. All lies! Think about it, wouldnt cutting the brain to remove a scare or focuse make a new scare or focuse? Ive been there and believed all the promises just to be disapointed like most are.
Cerindipiti
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Mike-
I don't know what you mean because I'm not there yet... I haen't studied the surgeries.. no one has told me that I need surgery.... any and all support is appreciated though....
I don't know what you mean because I'm not there yet... I haen't studied the surgeries.. no one has told me that I need surgery.... any and all support is appreciated though....
epileric
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It's a possibility that the doctor is doing this for money but even if he is, going through this type of testing only works in your best interest. Even if the meds you're on right now are what's best for you I see no harm in trying to find out more about your medical situation.
If they do recommend something like surgery remember that you have the final say in what is done with your body/mind. I've had neurologists try to talk me into surgery 3 times, 2 of them were rather pushy but I still have the final say. Remember that. That applies to everything-meds, treatments, diets etc that might help your seizures. Meanwhile, no use worrying about things that haven't become an issue yet. Let them observe you & don't be scared to ask questions. It is your body & your medical issue at hand. Hopefully they'll find something that can benefit you.
McGill
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Cerendipity, I was through the telemetry screening which you are about to undergo. While it's normal for the drs. to decrease your Rx to nil if possible, they do it so that they can get as exact a reading of the continuous EEG for the time the electrodes are attached to your head.
Some people have had this done and have been able to be monitored at home, depending upon the length of time required for obserrvation. From your description, it would appear that the neurologists want to do a thorough test to try and determine the focus of your seizures. Please remember: not all the foci are in operable locations on your brain, so in some cases, surgery isn't possible. One thing IS certain: any time there is any neurosurgery done on your brain, there is always scar tissue from the surgery which will cause seizures. If a person hasn't been diagnosed as having epilepsy, this type of seizure is known as post-traumatic epilepsy b/c there is no prior history of seizures. For someone like you, this would not be the case. Please be as informed as possible if there is any mention of surgery or even the possibility of it.
Some people have had this done and have been able to be monitored at home, depending upon the length of time required for obserrvation. From your description, it would appear that the neurologists want to do a thorough test to try and determine the focus of your seizures. Please remember: not all the foci are in operable locations on your brain, so in some cases, surgery isn't possible. One thing IS certain: any time there is any neurosurgery done on your brain, there is always scar tissue from the surgery which will cause seizures. If a person hasn't been diagnosed as having epilepsy, this type of seizure is known as post-traumatic epilepsy b/c there is no prior history of seizures. For someone like you, this would not be the case. Please be as informed as possible if there is any mention of surgery or even the possibility of it.
McGill
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Cerindipiti said:
Please check with your pharmacist and ask about the side effects of dilantin. Also, if you can, please try and keep a diary of what happens when you have a seizure or what you're doing when one occurs. You may need to be on a "cocktail" of Rx in order to adequately control your seizures. Sometimes, one Rx alone isn't enough. If you can't recall any seizure activity yet it occurs when you're around people who know you, ask them to describe what happened so that you can document it. This kind of information is beneficial to the drs. when prescribing Rx to control your seizures.
Cerindipiti
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Mc Gill I super appreciate your information. I'm sure websites don't immediately come up with that kind of information right off the bat. Now I AM jumping to conclusions when it comes the surgery but someone who is put into the hospital for an expected 4 days to study seiures (which I have dozens of eveyday) they aren't doing it for the good time. In my doctor's words he said "we want to put you in the hospital in order to find the best medication for you that wil most effectively help you with seizure control." He used the word "medication". Okay, granted I'm te one who put it in quotes. So can you tell me specifically about your experience, if you remember. Lik the brought you in, and did this and that and put the seizures electrodes on you...and then u got breakfast....there are people walking around and they ask you this..or they just stare at you like you're a zoo animal.... you know what I mean? Thank you so much for your reply!
Cerindipiti
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I super appreciate your support. I agree with you I think the additional information can't be hurtful. Thanks again!
McGill
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Cerendipity, I had been observed by my neurologist who was keeping track of the Rx effectiveness. Before there was any mention of surgery, I had to be observed in the hospital for nearly 2 wks. in the hospital while I was awaiting my turn in the neurological telemetry unit. During that time, the medical staff gradually reduced my Rx to observe my movements and behavior when I was having seizures. Once this was thoroughly documented, they sent me to the telemetry unit to be hooked up to the remote EEG machines. The medical staff will ask you about your complete medical history - everything -and will ask you about any family members who might also have seizures or any other illnesses. As complete a medical history and family background as possible is necessary for them in assessing your condition. Also, I had a battery of tests done to determine some psychological problems, primarily cognition and my ability at problem solving. A complete visual field exam, including eye examination was also done. (This may or may not be required in your case, especially if you have been in the hospital before to get your seizures under control.) However, I stand to be corrected about this. Things have changed since I went in for my assessment and they might be completely different. Please be perpared for something different other than what I described.
My meals weren't restricted unless I asked for a special diet, I was able to move around the ward where I stayed prior to going into the telemetry unit and play card games, chat with other patients, and live as normal a life as possible.
I travelled from my home via train to the hospital and when the oepning in the hospital was ready, I took the bus and was admitted, showing the Admissions Office personnel my documentation. I was admitted to0 an open ward with about 7 other patients who had various other serious neurological conditions, although the majority of them were for seizure control and/or identification and to determine whether or not I was a candidate for neurosurgery. I wasn't, ultimately.
Once I was in the telemetry unit, the EEG technicians attached the electrodes to my head and wrapped a bandage around my head to try and keep the electrodes in place so that they wouldn't move during the periods when I was asleep. Invariably, there were always several electrodes which had to be re-attached after a night's sleep. While in the telemetry unit, I wasn't allowed to have a shower or a bath b/c the electrodes would get wet and fall off, so sponge baths (or bed baths) were the order of the day. In the telemetry unit, you're monitored constantly on the EEG machines by the Nursing staff which was just outside my room so that they could see if anything serious was happening. I was also accompanied everywhere I went - including to the bathroom b/c my Rx had been decreased deliberately and as a precaution in case I had a seizure so that I wouldn't injure myself.
As for what you stated about having the right Rx to control your seizures, it sounds as if surgery is not an option at this point, since using an invasive technique such as surgery presents a much higher risk for you than does the use of Rx to control your seizures. Surgery MAY be an option later on if the Rx doesn't (and isn't able to) control your seizures. I hope this answers your questions and eases some of your concerns.
My meals weren't restricted unless I asked for a special diet, I was able to move around the ward where I stayed prior to going into the telemetry unit and play card games, chat with other patients, and live as normal a life as possible.
I travelled from my home via train to the hospital and when the oepning in the hospital was ready, I took the bus and was admitted, showing the Admissions Office personnel my documentation. I was admitted to0 an open ward with about 7 other patients who had various other serious neurological conditions, although the majority of them were for seizure control and/or identification and to determine whether or not I was a candidate for neurosurgery. I wasn't, ultimately.
Once I was in the telemetry unit, the EEG technicians attached the electrodes to my head and wrapped a bandage around my head to try and keep the electrodes in place so that they wouldn't move during the periods when I was asleep. Invariably, there were always several electrodes which had to be re-attached after a night's sleep. While in the telemetry unit, I wasn't allowed to have a shower or a bath b/c the electrodes would get wet and fall off, so sponge baths (or bed baths) were the order of the day. In the telemetry unit, you're monitored constantly on the EEG machines by the Nursing staff which was just outside my room so that they could see if anything serious was happening. I was also accompanied everywhere I went - including to the bathroom b/c my Rx had been decreased deliberately and as a precaution in case I had a seizure so that I wouldn't injure myself.
As for what you stated about having the right Rx to control your seizures, it sounds as if surgery is not an option at this point, since using an invasive technique such as surgery presents a much higher risk for you than does the use of Rx to control your seizures. Surgery MAY be an option later on if the Rx doesn't (and isn't able to) control your seizures. I hope this answers your questions and eases some of your concerns.
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Cerindipiti
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Ladies and Gents-
Okay, it's true that doing a 4 day in hospital EEG could be beneficial either way. However, he wants to put me in during my academic semester. Okay, that aside... how many of you are currently medicated and it helps a ton with your seizures but for those of you with Partial complex or Absence, do the mecidine ease your seizures a lot but d you still have some seizures each day and how many? I mean is it rational for us who have dozens of seizures a day to expect that medicine will clear up ALL of them? Or can it and should it be expected that we are still going to have a few?
Okay, it's true that doing a 4 day in hospital EEG could be beneficial either way. However, he wants to put me in during my academic semester. Okay, that aside... how many of you are currently medicated and it helps a ton with your seizures but for those of you with Partial complex or Absence, do the mecidine ease your seizures a lot but d you still have some seizures each day and how many? I mean is it rational for us who have dozens of seizures a day to expect that medicine will clear up ALL of them? Or can it and should it be expected that we are still going to have a few?
Cerindipiti
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McGill-
You are amazing! Thank you for all the information and detail. I am comforted in knowing what to expect. It seems that my new neurologist does a ton of these. He says that he specializes in people with difficult seizure control. I am so nervous. I just got off the phone with them. they won't tell me anything about my hospitalization until "we" get closer to the date. I hate this. I'm scheduled for March 5th at Holy cross here in/near Maryland.
You are amazing! Thank you for all the information and detail. I am comforted in knowing what to expect. It seems that my new neurologist does a ton of these. He says that he specializes in people with difficult seizure control. I am so nervous. I just got off the phone with them. they won't tell me anything about my hospitalization until "we" get closer to the date. I hate this. I'm scheduled for March 5th at Holy cross here in/near Maryland.
With all the latest information EEG Nerofeedback and its ability to help control seizures surgery would be the last thing on my mind. I only wish that I would have knowen about nerofeedback before my surgery(R.T.L). It changed my life in so many ways. I had that choice then but not all the information that I have now.
Elaine H
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Hi Guys
Hope 2010 is going well for you all?! On the subject of memory, and you have all disclosed your craziest experiences of short term memory problems. how about this. I may have already mentioned my recent episode with the hairdryer, but how about this.
When I got to casualty, and told them all what had happened for me to have such horrific first degree burns to the palm, and fingers of my right hand, I realised while explaining it, that I had actually clasped my hand around the blowing part of a red hot hairdryer, and without any warning, I had the seizure, burnt myself, got up, switched it off, gone downstairs, turned the kettle on and made some toast, and it wasn't until I went to put butter on my toast, that I looked down, and kind of stood back in horror when I saw my hand, I still can honestly say, that I still have absolutely no idea what happened, I just burst into tears, and rang Mark, I said, "I think I've burnt my hand, what do I do?" When I text a photo of it to him, he came straight home, but it makes you wonder, how can the human brain go through that, and the pain, and have no memory of it, it fascinates me it really does!
Anyway, I'm on penicillin, as I have an infection in the wounds, I have to get it dressed every day at the hospital, and it's still agony, but I'm still smiling, still trying to type a bit of my book up every day. Just you all take care my friends, and thanks so much for being there, I really mean that!!
Lotsalove
Lainey xxxxxxxxxxxxxxxxx
Hope 2010 is going well for you all?! On the subject of memory, and you have all disclosed your craziest experiences of short term memory problems. how about this. I may have already mentioned my recent episode with the hairdryer, but how about this.
When I got to casualty, and told them all what had happened for me to have such horrific first degree burns to the palm, and fingers of my right hand, I realised while explaining it, that I had actually clasped my hand around the blowing part of a red hot hairdryer, and without any warning, I had the seizure, burnt myself, got up, switched it off, gone downstairs, turned the kettle on and made some toast, and it wasn't until I went to put butter on my toast, that I looked down, and kind of stood back in horror when I saw my hand, I still can honestly say, that I still have absolutely no idea what happened, I just burst into tears, and rang Mark, I said, "I think I've burnt my hand, what do I do?" When I text a photo of it to him, he came straight home, but it makes you wonder, how can the human brain go through that, and the pain, and have no memory of it, it fascinates me it really does!
Anyway, I'm on penicillin, as I have an infection in the wounds, I have to get it dressed every day at the hospital, and it's still agony, but I'm still smiling, still trying to type a bit of my book up every day. Just you all take care my friends, and thanks so much for being there, I really mean that!!
Lotsalove
Lainey xxxxxxxxxxxxxxxxx
Im sure that if you had nerofeedback treatments for six months that your stuff would change. No other promises, just change. Change is good it helps us grow in our own awarness.As far as memory gos, I think that our brain protects us from memorys that are too upsetting for us.
seizingbeauty
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I only wish that were true Mike. Unfortunately sometime the images burn themselves into your mind so deep that you can not hide from them. Again really wish I could have my choice of what went and what stayed, I'm sure hiding in there somewhere are better memories than the ones that haunt my nightmares