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Old 09-07-2002, 11:29 AM   #1
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Post Changing from Dilantin to Phenytoin...good idea?

I have been taking Dilantin for over 30 years. My doctor recently renewed my prescription and I was given Phenytoin instead. I have been doing a little checking and found that Dilantin is a drug that has a "Narrow Therapeutic Index (NTI)." Has anyone encountered any problems after switching from Dilantin to Phenytoin?

 
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Old 09-07-2002, 05:25 PM   #2
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I was under the impression that the two are essentially the same medication. I know of folks who have had some nasty issues with side effects from the long-term use of Dilantin. Lessened bone density, shrinking of the cerebellum causing gait imbalance, etc. You might want to do some research regarding that.

 
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Old 09-07-2002, 09:57 PM   #3
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I want to let you know that the generic forms of one med are not always produced in the same place. Phenytoin could be made wherever companies happen to choose to produce it, even out of the country. Even though you would think that all of the tabs would be the same purity, that is not necessarily the case. For many years, I have heard that generics were not the same in purity as the brand name drugs, and from the articles I have read recently, that seems to be very possible. Even the purity of different batches from the same plant could differ. You also have to consider the location of the plant where your particular bottle of pills were made. Not all plants are in the US therefore, not necessarily the same standards. There are some meds that not recommended to be taken in generic form. AEDs is one classification that is on that list. Maybe the generics are better now than when that list was printed. Do you know why the doc allowed the generic? I would ask this. Does he have knowledge that generic Phenytoin works just as well as Brand name Dilantin for his patients or was there another reason like the insurance company's policy, etc? If the doc specifies Brand name, the pharmacy is supposed to fill it that way and the insurance comnay chould not have a problem as long as it is specified Brand Only in the script. Dilantin's patent has recently expired, so you will probably be seeing more generic scripts writtem now. You might give it a try and and see how it works for you given the fact that the generic Phenytoin is new since the Dilantin patent recently expired. If you do notice any difference in the effectiveness, you can always go back to brand. I did want to pass on what I learned re generics to you. You use your own judgement given the facts. Some other generic meds work well for the patients, but still we all need to be knowledgable. Tattoo
P.S.- Dilantin was the first drug I was put on back in the 60's, and I was on it more than 10 years. It was not the med to control Complex Partial sz and was not at all helpful for me. Are you concerned about the long term effects of taking Dilantin? Tattoo
[This message has been edited by Tattoo (edited 09-08-2002).]

[This message has been edited by Tattoo (edited 09-08-2002).]

 
Old 09-08-2002, 02:11 PM   #4
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Thank you to both Mommee and Tattoo for your responses to my post. I started taking Dilantin (along with Phenobarbital and Valium) in 1968 to control my grand mal (tonic clonic) seizures. I soon stopped all but the Dilantin which fortunately controlled my epilepsy, once I accepted the fact that I had to take a drug for the rest of my life. I was lucky in that all the tests I had back then were negative and I was told I had idiopathic epilepsy. Has anyone had a pneumo-encephalogram? It was unbelievably painful! Tattoo...thanks for the explanation for why I was probably given Phenytoin. I'm definitely going to check with my doctor about making sure his prescription calls for Dilantin and not the generic equivalent. And yes, I am very concerned about the effects of taking Dilantin for a long time. In fact I am quite P.O.'d that my doctors never mentioned it to me. I haven't had a seizure in over 20 years, but do occasionally have auras, which is why I was told I had to continue with the Dilantin. Any suggestions as to which drug can replace Dilantin so I can remain seizure-free?

 
Old 09-08-2002, 02:57 PM   #5
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The person that I work with that was recently found to have permanent health problems due to long-term dilantin use was recently successfully switched to Neurontin. She, like you, has also been seizure free for quite some time and had been taking Dilantin for over 20 years (she is 65 years old). There are also other newer drugs out there. I have been told that Dilantin is no longer a drug of first choice, but rather an "old" drug of last resort. Many people are left on Dilantin or given dilantin because of insurance cost issues. My person, for instance, was receiving medicaid and only certain drugs were listed in the formulary. Phenytoin is cheap, therefore, insurance companies will approve it.

 
Old 09-08-2002, 04:11 PM   #6
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First, let me say that if you are having auras you are still having seizure activity. An aura really is a simple partial seizure. It reminds me of the pull of a trigger in a since and sets things in motion. Waaay down the road with my epilepsy, I begin to have what I called flashes. they consisted of that same strange Simple Partial feeling but was only a few seconds long. There was no flash as in light or anything. About the same time, I begin to have deja vu and jamais vu which also served as auras. I had not had these short warnings ever before. These can develop into more severe seizures. YOu mentione that your diagnosis was idio[athic epilepsy. The idiopathic only means that thereis no known cause. Man of the cases of epilepsy are idiopathic, but the actual diagnosis is determined by the type of seizures and the location of the focus. Mine would be Complex Partial Eplepsy or Temporal Lobe Epilepsy. What is your diagnosis? Even though I was diagnosed 37 years ago with Complex Partial, Dilantin was the AED handed to me as I said. Dilantin is not for my type of seizures and did it help. the seizures worsened. It sounds like your docs may never have done extensive testing to determine just what it was they were treating. Is that the case? It certainly is not unusual especially if you are seeing a general neuro. Are you seeing n Epilepsy Specialist, Epileptologist, at a Comprehensive Epilpesy Center or are you seeing a general neuro? I enourrage you to find a good patient oriented Comprehensive Center and let them do the necessary testing. A VEEG comes to mind to determine the location of the focus because it would tell the Epileptologist what meds may be best to treat your seizures. I have heard of a pneumoencephalogram, but that was in school MANY years ago. Who is this you are seeing with the old drugs and old tests? Why would your doc suggest that test and not a VEEG? They will introduce air and it can be painful. Persopnally, any doc that recommends that better be able to spit out very detailed rationale as to why he wants that particular test done as opposed to any other and what he hopes to accomplish. Nothing less. I think that a good MRI may show him what he may could get from the test he mentioned. It would possibly show space occupying lesions. So would an MRI. One is invasive and the other is not except for the dye given via the vein in the MRI provided it is even done with contrast/dye.Are you sure you are not haveing Secondarily Generalized seizures given the auras you now are having? he best med for you depends on the type of seizures you have and the locastion. A VEEG is needed to determine that more than likely. at the very least, an EEG that does detect the spikes, but they are not as sensitive and do miss the spikes many times. My first EEG was normal, but I was diagnosed correctly anyway based on the fact I had had more than one seizure and the desription of what happened during them. That's also when the doc gave me the Dilantin, but that was 1965 too. The VEEG is the test I would want to have and only at a Patient oriented Comprehensive Epilepsy Center, not one with Research studies at the top of their agenda. Not at all. By the way, Neurontin seems to be more effective for relief of myopathic pain than for seizures. The company has been searching for other ways to use the med. It is a drug that the pharmaceutical company was and maybe still is strongly 'encouraging' its use by offering lavish gifts etc to the docs. There is an article in the newspaper re this, and it is posted on one of the boards. Possibly this one. Neurontin was a real drink of water for me. You do need to know just what type of seizures and where the focus is located. Tattoo

[This message has been edited by Tattoo (edited 09-08-2002).]

 
Old 09-08-2002, 10:05 PM   #7
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Hey Gang,
Another reason for Doc's being so quick to prescribe Dilantin is because it can be given by IV for a first-time seizure. It will supposedly work for partial AND grand mal seizures. I had a real difficult time with it....mostly cognitive problems, but I know of many people that swear by it. Be well....:smile: Kathy
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Old 09-09-2002, 09:40 AM   #8
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A doc can order a med to be tried for whatever he chooses. His license gives him that authority. That does not in a ny way mean that the med ordered is the appropriate one for the specific problem. I have never in more than 35 years heard that Dilantin wa effctive with Partial seizures. More than likey it is the Secondarily Generalized activity that it may habe some effectiveness, but it still is an old drug and newer ones are out. By the way, Dilantin can be given IV, but you better be sure the med goes in the vein and not the tissues. If there is a chance that the vessel has been blown, a through and through stick, or any leak into the tissues, Dilantin can cause severe tissue damage. Some people have had to be treated in Burn Units due to the tissue damage from IV Dilantin coming in contact with the tissues. There is a reason some meds are not given in the muscle, IM. Dilantin is one of those meds. I do not see the connection between the fact that IV Dilantin is now available and a doc choosing to continue using an old drug if that drug is not stopping all seizure activity and especially given the long term usage. You can easily find info abt Dilantin's effect on the tissues. Tattoo

 
Old 09-09-2002, 03:02 PM   #9
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I accidentally came across this Message Board while I was searching for information about Phenytoin. What an eye-opener it has been for me! In 1968 I had my first grand mal seizure when I was 18 years old. I think my parents were so concerned that I might have a brain tumor or something that the diagnosis of epilepsy was a relief. I remember having several EEGs and the dreaded pneumoencephalogram and the results were all negative. What I mean by that is the doctors found nothing to explain the fact that I had a grand mal seizure. Eventually they decided that I must have some minute scar tissure that doesn't show up on any of their tests. I've probably had about 7 grand mal seizures in my life....all more than 20 years ago. In the 1970s I had a CAT scan which also showed nothing. Tattoo asks if I have had a VEEG or seen an Epileptologist. I am embarrased to admit that I have never heard of either one. I saw a neurosurgeon ( I don't know why it wasn't a neurologist, but hey, I was a kid and that was who my parents took me to see). After about 10 years I was tired of driving over to the University of Minnesota every year and felt that I was wasting his time and mine. Since then my internist has been writing the prescriptions for my Dilantin. I do have my Dilantin levels checked every year. I would have to say that my epilepsy has pretty much been a non-issue in my life. Fortunately my dentist says my gums are fine and show very little inflamation. So all these years I have been dutifully taking 300 mg. per day and NOBODY has ever mentioned to me that long-term use of Dilantin might be bad for me. Sometimes I wonder if I even have epilepsy at all. I have an appointment next week with my internist. Can anyone suggest any sources I can check out to learn about the long-term effects of taking Dilantin? I also have been taking Prempro for four years.(Yikes!) I think my appointment might last longer than usual. Thanks to all for their input. I appreciate it.

 
Old 09-09-2002, 03:52 PM   #10
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A VEEG is a Video EEG. It is done in the hospital and last 5-7 dsys approximately. Comprehensive Epilepsy Centers will order this to determine where the focus is and from the results offer the options available. They admit you to a monitoring unit, hook up the EEG and take away yout meds in order to make you seize. They monitor the EEG tracings for the entire period and video you to see what you do during a seizure. Based on these findings, they hope to locate the focus. They also can better tell what type of seizures you are having. That helps the doc know what med would be best. That also tells the doc if there are other options out there that mat work for you such as the VNS or surgery depending on the individual case, severity, and if meds will not stop them. There are meds that you have not tried, newer meds. First though, the doc needs to know exactly what he is treating. Have you always had the auras you are having now or is this something relatively new? If it is new I would consider the possibility that the illness may be getting worse. Read about Kindling. The misfiring cells can teach the healthy cells how to seize just like a computer can store in memory. That makes the disease process worsen as more cells will be involved in the misfiring. I don't know that you ever got an accurate diagnosis since it has been a very long time since you had an EEG and have been seen only by possibly one neurologist way back when, a neurosurgeon, and your intermist. Since you are having auras still and on meds, you at the very least should be seen by a neurologist, but even with that the general neuro will write you a script probably for the same as yo have now and send you out the door. An Epleptologist is a neurologist who has received advanced training at a Comprehensive Epilepsy Center, a Fellowship, and who treats only epilepsy patients. A general neuro will treat more headache and MS patients than epilepsy and will know not know all there is to know abt epilepsy. he will not know all he needs to know in order to treat you the best way possible for your case. Trust me! I wasted a lot of life having the general neuros practice, play doc, on me with the pills thast did not stop my seizures. My father is a doc, and he too left me on the same dose of Dilantin the neuro put me on when I was diagnosed in 1965. As I said, I have wasted a lot of life with the wrong treatment too. You may be satisfied as things are, but I would want to know exactly what the true diagnosis is and what the best med is. Then once on that, you may be fine without auras even. Another thing, you mentioned Prempro. Read abt CATAMENIAL EPILEPSY. Also read the thread re hormones in Abnormal Period. I was on Premphase and had my Gyn change that to two diferent pills (estrogen tab and a progesterone tab) instead of the one combined pill. I had him lower the estrogen dose so it would not trigger seizures. It did help too. Do you notice that you have nore sz activity near your period? See if you can get an accurate diagnosis based on your EEG tracings and go from there with the med. Start with a neuro who has a lot of Epilepsy patients, not one who has only a couple but has a big Headache or MS practice. Good luck. Tattoo

 
Old 09-12-2002, 10:17 PM   #11
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I was on dilantin for years. It was difficult to keep the 400 mg. strength in my system. I took 2oo mg. every 12 hours. I changed to phenytek and now get the strength needed. If you take them before bedtime the initial drowsiness is gone when I wake up. Basicaly it is a timed released dilantin that will work for 20 - 24 hours. I like the phenytek better than the dilantin. The same rash side effect is still present durring the summer, but it's better than the seizures.

 
Old 09-14-2002, 09:27 PM   #12
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I agree with Tattoo.....going to a doc who specializes in just seizures at an Epilepsy Center made all the difference in my life. I also chose to go to a bigger city hospital, and not mess around with the community Neurologists anymore. The docs in the general community just did not seem to have the current info I needed about medications, testing and diagnoses. I also did my research on the docs there and picked the one who specializes in medications. I just will not accept "Oh, your fine....here's your script...see ya in a year" anymore. I would suggest to women on Dilantin to make sure to talk to your doc about also prescribing a calcium supplement because one of the long-term problems is loss of bone density. Another is possible shrinking of the cerebellum, which can cause balance problems....this damage would show up on an MRI and would be evident in a person's gait. In the case of my woman client, no one attended to these symptoms in time so her damage is now permanent. (Of course her gait problems now lead to falls, and she breaks bones more easily because of the bone density issue....I'm sure you can see how the problems all relate). Her primary physician had been prescribing the Dilantin for years without having a Neurologist on board.....just checked the levels periodically. The woman is mildly mentally retarded and lives independently. When she would complain to the doctor that the medicine "made her feel like crap" and sometimes wouldn't take it, resulting in low levels, she would be told she was being "non-compliant" with her medications and she had to take the medicine. It is a shame no one ever listened and got her a got Neurological work up when they should have. They could have gotten her on a better medication and perhaps alleviated some of the damage that has been done to her body. Not to mention the personal insult of not listening to her when she was trying to tell them that things were not right within her body.

 
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