Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Staring spells with Dilantin? Pls. write back, need to know
Sat, 03/19/2005 - 10:41Topic: Medication Issues
I don't have epilepsy but a movement disorder, for which my doctor has put me on 300 mg of Dilantin a day. Since I started the Dilantin, I have been having regular staring spells. I know there are certain types of epilepsy that consist of staring spells and I was wondering if those who do have them remain aware (like you can hear what's going on around you) while the staring spell is happening?
I do remain aware, but kind of zone out. Last night we were at the circus and it started. One minute I was watching the circus, the next minute I was staring off into space. It seemed like everything was in slow motion, sounds, voices, but I could still hear everything. I felt disconnected from what was going on, but was aware that I was having a spell. I wouldn't blink as often as I normally would and my eyes began to sting and water up.
Please let me know what happens when you are having a staring spell. I hope it's just from the medication...Theresa
Comments
RE: RE: Staring spells with Dilantin? Pls. write back, need to
Submitted by Hope19 on Thu, 2005-03-17 - 22:50
I am on Dilantin I was on 1400 mgs but I am bing takeing off of it..I am on 800 mgs now..I am also on Trileptal and Kolinapin and Adavain.It took me being on 1400 mgs of dilantin to get my leval up now its to high so who knows whats going to happen with that..if anyone knows anything that can help please email [email protected]
RE: RE: RE: Staring spells with Dilantin? Pls. write back, need
Submitted by Gretchen on Fri, 2005-03-18 - 00:05
Oh Hope!I took a sharp breath when I read your post. Did you mean to type you're on **1400 mg Dilantin**!? That is a whale of a lot of Dilantin! I've been reading posts for years plus I'm on Dilantin and the highest I've ever heard anyone take is 700 mg. That doesn't mean people don't take higher than that, I'm sure they do to reach therapeutic blood levels, again that's only my reading posts, but gosh, think about that. The usual starting dose is 300 mg? I don't take even quite that much, and still have to fight to keep my blood levels within normal limits. I am always in the very high normal limits now that I've been dropped below 300 mg but was toxic, then wildly and dangerously toxic on 300 mg for 2 years. The thought now is - that's done some damage to other parts of my body. I have several thoughts I want to share with you. The first one is based upon a seminar I went to once on pharmaceuticals. It was conducted by a pharm manufacturer. This seminar stated that most medications are processed through the liver. We all only have one liver and we can't live without it. Using as an example a medication that is 100 mg? One person's liver might be able to use/process 90% of that drug, be more efficient, meaning get a big bang for their buck on 100 mg while another person's liver might only process 50 mg of the same drug. BUT 100 mg of that drug is still in the body and the potentially bad effects of the drug while not targeting say, your motion disorder, still can be ravaging you with side effects. Ravaging is too strong of a word probably, but in my case? That's exactly what's happened to me on Dilantin so what do I post? I'm not sure if posting that is responsible yet I had never read, didn't know, Dilantin can be very tough on some people's body. It has been on mine. On the other hand I've read one person has been on it for 40 years with no problems. But how does that person, me or you know who is going to be the one with bad consequences?You know what? Normally I'd read a post like yours and after some bad whip lash's from posts I've typed saying, what you just said is concerning for me and why? Would you get a second opinion, or check that mg dosage again or talk to a pharmacist, whatever? I've gotten my hand smacked for being too outspoken, which seems to be a personal problem of mine or I tend to think a personal problem for others, but still? That's mg dose is concerning to me for you. I'm not a pharmacist, not even close. But it's alarming to me in some vague, internal knock knock way, that a doctor is pouring that much into you. I'm having Dilantin do some rather bad things to my body. Right now it's the only thing I can take. I'm intractable. It might be because I've been on many AEDs, and can only tolerate Dilantin, medication intolerant IOW, but now I'm going to have to face the dreaded AED trials again, which I went through for 2 years and it was sheer misery. I got off track but my point is I WONDER, note I don't KNOW, but I'm wondering and worrying that you have to take that much to reach therapeutic blood levels, what does that mean to the rest of your body? If anything? I really don't know. Currently? The nerves in my feet are dying - called peripheral neuropathy suspected from Dilantin. That's not reversible. I've had an inflammation/infection of my pancreas several times and that literally can be lethal. I was on home IV antibiotic therapy for over a month, had to take insulin, felt like heck and that was at the least the second, maybe third time I've had it and it's suspected that's from Dilantin. Yesterday I just got an all clear on my liver, it's not in failure, and the screamingly high liver enzymes I was throwing off, are now much lower, was suspected from Dilantin. My liver problems were determined NOT from Dilantin but Dr. Liver also said, Dilantin is very hard on the liver for many, some, not all, and you're taking 1400 mg? YIKES! I guess my thoughts are, and please please realize these are only thoughts of just a lay person about medicines, but ask a pharmacist please, if that high of a dose could be harming other areas of your body. I'm concerned. Staring spells on Dilantin? I don't know. As I said I'm intractable and have absences. Mexican Fire posted so well on that I won't repeat her good information. I developed many sz types after I was on AEDs, as time has passed, so I doubt I have absences or staring spells from the Dilantin. I'm sure it's just a part of my epilepsy. Mexican Fire's description of absences was right on for me. I'll only add I tend to "cluster" or have one after the other for a period of time but as she said, I rarely know I'm having absences until the clustering goes on for so long my intellect starts sliding down, or my world starts seeming like a slide show, and other little hints, but I am totally unconscious. Now some people post they are not TOTALLY unconscious and I think I've experienced that. I'm not sure where in that short sz though it is where I'm aware of hearing voices or seeing things vaguely. Maybe it's when the absence sz is letting go. I don't know but in general? I'm normally totally out from beginning to end and the onset and let up of the absence for me is abrupt. Kind of a "now I see you, now I don't" effect. Go to the thread that starts out with something like "Are U bothered...". Myself and others there talk about photosensitivity and feeling magnetized, trance like, mesmorized by certain visuals that also could be called "staring spells" I'd think. My husband does not have epilepsy. He's read that thread. Our favorite TV show is "American Idol" where there are strobe lights, twinkly, sparklies, all kind of lights doing all kind of things and he said he can start feelings mesmorized if a strobe effect on that show is occurring. So I think in general a really good light show? Can be really hard on many - not just epileptics. I'd like to form a big movement called something like "Strobing Anonymous" or "Down witih Strobe Effects". IOW do you think your staring spells are concurrent with things that cause a phohtosensitive effect? In simple partial sz's? Frequently I can move, hear, see, talk. Frequently though I'll feel very disconnected from my environment, not feel I'm reacting with it. Become very internalized. My 5 senses can have distortions like hearing can be echoey, vision is tunnel vision for examples but those are sz effects. All that aside my own personal opinion? I think the AEDs are so strong? They can make a person feel any old way they want to. I've had some extremely bizarre side effects from other AEDs. I've been almost afraid to tell my doctor, thinking the guys with the straight jackets will come and yank me to their little place in the deep country! I think when a drug makes you feel crazy, how long do you FEEL crazy before you start GOING crazy? I refuse to take a drug one more time that makes me feel like that. I may have epilepsy, but that doesn't mean the quality of my life has to take a deep plunge because of side effects that can be avoided by taking a different drug. Anyway, go to the PDR (Physician's Desk Reference) and look up Dilantin, then side effects and see if what you're experiencing is listed. You can find a copy in any library, your physician's office, maybe even it's on line now, don't know. Probabl not bcause it's so large. I get a revised PDR every year on a CD. free, because of an organization I serve on on of their boards, and it's so large, it's more than one CD and CD's hold a lot of information. Look up in Google Dilantin, maybe it'll have ALL the side effects ever reported like the PRD does. I doubt it, but I don't know that either, a suggestion to you only. The only problem with using the PDR is that if anyone has reported any side effect on any drug? It goes into the PDR. So if you see a "staring spell" side effect? How many people have experienced that out of how many people are taking this drug? One or one million? The PDR doesn't give that stat yet this reference is the preferred reference for doctors and hospitals.Good luck Hope. Medicines for me? I can't live with them, can't live without them! Gretchen
RE: Staring spells with Dilantin? Pls. write back, need to know
Submitted by mexican_fire on Thu, 2005-03-17 - 15:52
The only type of seizure that people remain aware of their surroundings in like that sort of thing that you described is a Simple Partial seizure.
People who have Petit Mal or Absences, have spells of staring for 5-25 seconds and they are NOT aware of what is going on around them, they aren't even aware that they had the staring spell.
This is something that you really need to talk to your doc about. You may even want to go on this site on the home page and click on epilepsy 101 the basics, and it will come up with a ton of different seizures types. Also the EFA www.efa.org has some good info on seizures in their answer place page. Some other good sites include these: www.epilepsyontario.org , www.seizures.com, www.neurologychannel.com, send your question into my clinic and they will give you an accurate answer. I don't much about Dilantin, since I haven't taken it for more than 6 months in the very begining of my epilepsy mess. The web address to my clinic is www.bni.com. I hope you go there and get the question asked. They are good about helping people.
I do know that Dilantin is NOT for SPS, or ABS, it is mainly used for CPS, SGTC and TCs. In fact, it can make Absences worse, as can Tegretol drugs.
I have been on that and 7 others, before they got to the combination I am taking now. Depakote--1250 mgs, and Neurontin--3600 mgs (max).
I have 2 Sydromes. The first one is TLE and it contains Auras, Simple Partial seizures, and Secondarily Generalized Tonic Clonics.
Then I have Adult Myolconic Epilepsy and it contains Myoclonics as the main type, and Grand Mals. I have Absences some, as well. They have a wave pattern of a 3 per-second spike-and-wave pattern on the EEG. The Myos have a sudden paroxymal burst of activity that is as quick and time-locked with the muscle contractions. Grand Mals have a high voltage pattern of generalized activity from all areas of the brain.
Any of the partial seizures have localized or focal spikes, slow waves, sharp waves, sharp spikes, or spike-wave combos. It can also be a normal reading, as well.
Mine were all abnormal, and my VEEG was even more interesting.
Nancy
The only type of seizure that people remain aware of their surroundings in like that sort of thing that you described is a Simple Partial seizure.
People who have Petit Mal or Absences, have spells of staring for 5-25 seconds and they are NOT aware of what is going on around them, they aren't even aware that they had the staring spell.
This is something that you really need to talk to your doc about. You may even want to go on this site on the home page and click on epilepsy 101 the basics, and it will come up with a ton of different seizures types. Also the EFA www.efa.org has some good info on seizures in their answer place page. Some other good sites include these: www.epilepsyontario.org , www.seizures.com, www.neurologychannel.com, send your question into my clinic and they will give you an accurate answer. I don't much about Dilantin, since I haven't taken it for more than 6 months in the very begining of my epilepsy mess. The web address to my clinic is www.bni.com. I hope you go there and get the question asked. They are good about helping people.
I do know that Dilantin is NOT for SPS, or ABS, it is mainly used for CPS, SGTC and TCs. In fact, it can make Absences worse, as can Tegretol drugs.
I have been on that and 7 others, before they got to the combination I am taking now. Depakote--1250 mgs, and Neurontin--3600 mgs (max).
I have 2 Sydromes. The first one is TLE and it contains Auras, Simple Partial seizures, and Secondarily Generalized Tonic Clonics.
Then I have Adult Myolconic Epilepsy and it contains Myoclonics as the main type, and Grand Mals. I have Absences some, as well. They have a wave pattern of a 3 per-second spike-and-wave pattern on the EEG. The Myos have a sudden paroxymal burst of activity that is as quick and time-locked with the muscle contractions. Grand Mals have a high voltage pattern of generalized activity from all areas of the brain.
Any of the partial seizures have localized or focal spikes, slow waves, sharp waves, sharp spikes, or spike-wave combos. It can also be a normal reading, as well.
Mine were all abnormal, and my VEEG was even more interesting.
Nancy