Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Pat- I just read this response, after replying to your 1st. Wow. That does sound like... they didn't know what they were doing? Seems they should have realized they were cardiac related. Sincerely, M. >From: " P. Pulasky " <PULASKY1@...> >Reply-egroups >egroups >Subject: Dilantin >Date: Wed, 09 Feb 2000 08:05:55 -0800 > ><< text1.html >> ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 In a message dated 6/5/04 4:01:45 AM Central Daylight Time, playpup@... writes: Has anyone used Dilantin? If so, I would like to hear your experience. My Doctor has suggested that I use Dilantin, but I wanted to see if there was any feed back on this. ps I sometimes don't get over to the chat groups. If you could back door me -- that would be great. Thanks is Dear is, my wife, who had Lyme disease, was diagnosed with Alzheimer's disease and began to have seizures. She was placed on Dilantin, and after a short time I told the Doctor that she might as well be dead as to be on this medicine. He advised me there are about 10 different medicines for seizures and then placed her on a medication that I cannot remember the name. I have searched through all my medical bills, but can't find it. It was something like ceroxomiznine or whatever. It seemed to work OK for my wife. She died August 21, 2001, and I am sure she was misdiagnosed as Alzheimer's, but ti was Lyme disease. I found out that I had Lyme disease since 1994 in Sept 2001 and later after performing all kinds of research recognized that my wife had Lyme disease, but it was too late. One thing you can do is try the different medicines as I suppose different people react differently with different medicines. At least you will know there are many medicines available. Dilantin made my wife go into a sleep like state. All my best wishes. Sidney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 I take Neurontin. It is used for seizures, and neuropathy pain which I have due to Lyme. I haven't had any problems with it. I take 600mg 3x a day. The first few days it made me a little tired, but other than that I had no side effects and from what I hear is supposed to be better than Dilantin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 I was on it in the past. The first time I was fine as a child. As an adult I took it again for the second time with phenobarbitol which made my pheno go sky high so high that I could of died from the pheno. I want to leave everyone, my children , husband and I told everyone off. Was sleeping away. I was very mean and nasty. It took 2 months for my levels to get back down again. It was very horrible to go through that. what kind of side effects are you going through??? > Anyone on dilantin? I am on it (this is my third time over the past > 8 years) and am experiencing some side effects. I was wondering if > anyone else who is on it or knows someone on it can tell me more > about the side effects. Thanks. starr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Well, I am only on dilantin. All I want to do is sleep. They've never been able to tell exactly what causes my seizure. Usually the best they can do is " stress " . The very first one I had at age 11 was attributed to " changing hormones " . I had a normal CT scan in October of 2002 as well as a normal EEG. My main thing is all I want to do is sleep. And I have low blood pressure. Headaches, which probably aren't entirely due to the medicine, but..... I'm having some difficulty concentrating. And I'm a receptionist and I've noticed I make A LOT more mistakes while typing than before I was back on this medicine. > > Anyone on dilantin? I am on it (this is my third time over the > past > > 8 years) and am experiencing some side effects. I was wondering > if > > anyone else who is on it or knows someone on it can tell me more > > about the side effects. Thanks. starr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 How old are you? Some of the side effects that you are mentioning sound like some issues I am going through right now with perimenopause. Make sure it is not your hormones right now. check this book Epilepsy: A Natural Approach, Reiter, MD > > > Anyone on dilantin? I am on it (this is my third time over the > > past > > > 8 years) and am experiencing some side effects. I was wondering > > if > > > anyone else who is on it or knows someone on it can tell me more > > > about the side effects. Thanks. starr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I'm 24. But the best guesses theyve had for the cause of my seizures (after normal cat and eeg, waiting on a cat for this last " episode " ) are they are due to stress(combined with lack of sleep and not eating right) and changing hormones (when I was 11). > > > > Anyone on dilantin? I am on it (this is my third time over > the > > > past > > > > 8 years) and am experiencing some side effects. I was > wondering > > > if > > > > anyone else who is on it or knows someone on it can tell me > more > > > > about the side effects. Thanks. starr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Yes sometimes the hormones can interfear with sleep. lisa > > > > > Anyone on dilantin? I am on it (this is my third time over > > the > > > > past > > > > > 8 years) and am experiencing some side effects. I was > > wondering > > > > if > > > > > anyone else who is on it or knows someone on it can tell me > > more > > > > > about the side effects. Thanks. starr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Lenore, Yes, Dilantin is contraindicated for CMT. Go to our Files section, open it, and there is a list of medications that can make CMT worse. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2010 Report Share Posted June 10, 2010 Hi Gretchen, Do you have any info about Dilantin and CMT? Thanks, Lois Caroline, Yes, I mean for CMT, as the news article stated. I don't know the exact month or day when human trials will begin. France seems to get things done quickly. As I stated earlier, Pleodrugs are compounds already on the market that will be repositioned (mixed) to provide new treatment possibilities. There has been a vast amount of fundraising for this, and from what I understand there has already been animal model testing. I do not know what the " compounds " are for, and no one else knows due to the ethics involved. Keep following Pharnex for updates. I'll post them here too. Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Hi Lois, Dilantin (Phenytoin) is a medication for people with CMT to avoid. http://www.charcot-marie-tooth.org/med_alert.php Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2010 Report Share Posted June 11, 2010 Our Dr. won't let us use dilantin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2010 Report Share Posted June 12, 2010 thank you for getting back to me. Lois  Our Dr. won't let us use dilantin. Quote Link to comment Share on other sites More sharing options...
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