Patty Posted August 9, 2003 Share Posted August 9, 2003 After I met my new nearulogist he wanted me to try "Neurontin" which I'm afraid to try cause of what I read on the paper inside the trial box.It said unexplained deaths occur with this med so thats why I'm not taking it.When I see him I'll just tell him I was afraid to take it.It could help control my body jerking at night.But I feel unsafe taking it cause of what I read.If I had not read it,I probably would of tried it. Patty Link to post Share on other sites
clia Posted August 9, 2003 Share Posted August 9, 2003 Patty, Call your neurologist tomorrow and explain your fears to him. He (or the pharmacist, not sure whose duty it is) should have explained to you the possible side effects and risks of the drug. Unexplained deaths are probably very rare, but if they've happened, they have to include them in the risks in your instructions. All drugs have some degree of risk. I think people can even die from taking aspirin. Just call your neurologist. He can explain the odds and all that much better than anyone on here can. I would think that if he thought you were at risk he would not have prescribed it. Link to post Share on other sites
moimeme Posted August 9, 2003 Share Posted August 9, 2003 Patty - there are risks with almost every single drug, and often the risks include death. People can definitely die from taking ASA, too - if they are allergic. I imagine that the chance of dying from that drug is very much less than the chance of being hit by a car but your doctor will explain what it means. Link to post Share on other sites
Author Patty Posted August 9, 2003 Author Share Posted August 9, 2003 Yea,I will tell him the fears I have about it, on my next appointment.Thanks. Patty Link to post Share on other sites
ThisGirlNameKD Posted August 9, 2003 Share Posted August 9, 2003 I'm surprise he didn't tell you what the side effects were. That's kind of careless on his part. All medications have side effects, but if it's that extreme where unexplain deaths can occur, then you were good not to take it if you weren't comfortable with that. I believe there are other medications available for your condition that you can talk to him about that would have less severe side effects. Link to post Share on other sites
moimeme Posted August 9, 2003 Share Posted August 9, 2003 ThisGirl - pharmaceutical companies are required to report any deaths, no matter how rare. People have very odd conceptions of risk. A lot of research exists to show that heart attacks and strokes are the most common causes of death, but people who have no trouble eating real fatty diets will fear a pill which has a much, much smaller chance of killing them. Link to post Share on other sites
ThisGirlNameKD Posted August 9, 2003 Share Posted August 9, 2003 To moimeme: I agree with you that the pharmaceutical companies are required to report any deaths. In fact, it was through the insert in the medication package that she learned about it causing death. My issue wasn't with the pharmaceutical company. It was with her doctor. Her doctor should have told her what the side effects we before he even prescribed the medication for her. That's required of doctors. Link to post Share on other sites
Tony T Posted August 9, 2003 Share Posted August 9, 2003 Patty: I'm sure this medication is very important for you to take if your doctor prescribed it for you. Almost anything you can do in life has a very tiny, remote possibility of causing a fatality...but the chances are miniscule (very, very small). If it will make you feel better, cut up or score the first pill in smaller pieces and take it piece by piece every five minutes. Certainly a very small part of it can't hurt you. After a period of time, you will have taken the entire pill and you will know it can't hurt you. Not that it matters, but death is the most perfectly safe thing that can ever happen to you. But these new pills will not do that to you, I promise. People who died when the took pills during trial periods were going to do so anyway, most likely. Otherwise, the pills would have killed many more people. Link to post Share on other sites
moimeme Posted August 9, 2003 Share Posted August 9, 2003 ThisGirl I have yet to have a physician who read off the entire list of potential side-effects of every drug to me. I thought the point was not to tell the patient ALL the side-effects but to make them aware of the most common ones, which my doctors usually do. I have just located online copies of two different patient information pamphlets for Neurontin and neither suggests death as a side-effect of Neurontin. One says that deaths took place which were associated with other anticonvulsants; no link with Neurontin was proved. Link to post Share on other sites
cindy0039 Posted August 9, 2003 Share Posted August 9, 2003 I agree with moimeme. I think that's the point of the pharmacy giving the patient the information sheet that goes with the medication; so they can read it and ask any questions they may have to the pharmacist or their physician. Doctors don't have the time to go over every single possible side effect of every single drug they prescribe. I take a few drugs for a couple of conditions that I have and I read the information and discussed the drugs with my doctor when I first started taking them. But if I took every word of the drug information literally and obsessed over every POSSIBLE (that's the key word) side effect, I would never take anything. But then I would be a very sick person because the drugs have a purpose and most of the time the alternative to not taking the drugs is worse than any possible side effect. Link to post Share on other sites
ThisGirlNameKD Posted August 9, 2003 Share Posted August 9, 2003 To Cindy and Moimeme: Points well taken. Link to post Share on other sites
Author Patty Posted September 10, 2003 Author Share Posted September 10, 2003 Im scared to take these new med called "neurontin"cause the paper said it causes death in some people thats why I havent taken it. I sometimes fall off the bed cause of my shaking gets worse.If I didnt read what I read I would try my new med.But I dont know how it will affect me.All my other meds make me real tired and Im also afraid to take it cause it will make me more drowsy. Patty Link to post Share on other sites
moimeme Posted September 10, 2003 Share Posted September 10, 2003 Patty - the chance of your dying from this med is very, very, very small. You are more likely to be hit by lightning. Try it one day when you are at home with people around you. Tell them you are scared and to keep an eye on you and take you to the hospital if anything happens. I'm sure you will be fine. They would not sell the drug if it killed lots and lots of people. Do you know, Patty, that people can die from taking Aspirin? Do you know that people can die from eating shrimp or peanuts? In a country with a few hundred million people there will always be things like that happening but they are very rare. Link to post Share on other sites
IRULE Posted September 10, 2003 Share Posted September 10, 2003 have you looked on the net to see if there is a natural drug equivalent to it?thats what i would do also tell your doctor maybe he knows of something else, tell him you don't feel comfortable taking it. Link to post Share on other sites
Yeti Posted September 11, 2003 Share Posted September 11, 2003 Originally posted by Patty Im scared to take these new med called "neurontin"cause the paper said it causes death in some people thats why I havent taken it. I sometimes fall off the bed cause of my shaking gets worse.If I didnt read what I read I would try my new med.But I dont know how it will affect me.All my other meds make me real tired and Im also afraid to take it cause it will make me more drowsy. first i have a few quick questions... these shakings you get, tell me a bit about them. how often do they occur? are you awake when they happen, or do you happen to just sometimes find yourself waking up on the floor sometimes? how long does one last for? also, how bad do you shake... is it just a tremble or a nasty convulsion? also, has anyone witnessed you shake, if so are your eyes kept open or closed? lastly, how high of a dosage of medication was perscribed to you? if your can answer these questions for me, i might be able to help clear a few things up for you... - Yeti the shaking king... Link to post Share on other sites
Author Patty Posted September 11, 2003 Author Share Posted September 11, 2003 first i have a few quick questions... these shakings you get, tell me a bit about them. how often do they occur? are you awake when they happen, or do you happen to just sometimes find yourself waking up on the floor sometimes? how long does one last for? also, how bad do you shake... is it just a tremble or a nasty convulsion? also, has anyone witnessed you shake, if so are your eyes kept open or closed? lastly, how high of a dosage of medication was perscribed to you? if your can answer these questions for me, i might be able to help clear a few things up for you... These attacks I get happen when Im starting to fall asleep.One I had last week was the first time I almost fell off the bed.But they are scary and they are about 10 seconds long.My mother has not witnessed me having one.They happen when Im in bed so no one really sees me having one.My eyes are always closed.The dosage Im suppose to take is 100 mg 3 times a day.In all it would be 300 mg.Im going to try my new med called Neurontin,on the weekend when I dont have to work. Thanks. Patty Link to post Share on other sites
Yeti Posted September 11, 2003 Share Posted September 11, 2003 ok, here's the most important part... the fact that you can describe this to me kinda give me the feeling that you are consious during the shaking. is this the fact? are you able to tell what's going on around you, or is the 10 seconds as if you blacked out? - Yeti Link to post Share on other sites
Author Patty Posted September 11, 2003 Author Share Posted September 11, 2003 Your right.Im quite aware of it, cause it happens before I fall asleep.Yes,I know that it is happening, cause it scares me. Patty Link to post Share on other sites
Yeti Posted September 11, 2003 Share Posted September 11, 2003 ok, do me a favor Patty... for the next couple of nights, until it happens again... i know it scares you, but don't take the medication yet... have someone sit in you room with you until you fall asleep and see if they can watch one of these occur. once this happens start on the medication, also start to get on a good sleep schedule, and watch drinking and alcohol with the medication for it reduces it's effects. don't worry about death, 300 mg won't kill you... it will probably get your stomach upset though... once you go back to the neurologist, take whoever witnessed this shaking with you to describe it, also if the medication doesn't cool it down there are plenty of other meds out there to try... i recommend staying away from Depakote though, you'll blow up like a blimp... it isn't cool... also you may want to talk to the neurologist about testing to see why this started, an MRI or EEG... truthfully an ambulatory EEG is the best bet, but you need to stay in the hospital for about a week... take care of yourself, and feel free to ask me any questions... - Yeti Link to post Share on other sites
Author Patty Posted September 11, 2003 Author Share Posted September 11, 2003 Thanks so much for you help.I do feel nausea alot lately and dont know why.If I took Neurontin,it might make it worse.But I think my best bet is to talk with my nearologist. Patty Link to post Share on other sites
Yeti Posted September 11, 2003 Share Posted September 11, 2003 the reason being is you are probably going to have to have an episode while during a test, that is why the abulatory EEG is probably the best option... if you don't mind me asking, what was it that the neurologist diagnosed you with? it almost almost sounds as if you have developed simple partial seizures. that's why i feel that you really need to find out what are causing these with a test... - Yeti Link to post Share on other sites
Author Patty Posted September 11, 2003 Author Share Posted September 11, 2003 Well,my nearologist has had me have several tests done.The tests that I had done all came back borderline for Lyme Disease,Lupus and Rhaumatoid Arthritis.Unfortunaly the doctors cant really treat me yet cause Im only borderline.I had tests done like MRI's awhile back and that came out normal. So they havent really made a diagnosis yet.But most of the time when I see my nearologist,he has me get more tests done.Hopefully soon,something will show up. I do think too,Im having partial seizures but still dont know. Thanks. Patty Link to post Share on other sites
Yeti Posted September 11, 2003 Share Posted September 11, 2003 i myself suffer from epilepsy, i developed it towards the end of my junior year of highschool. i found out while driving home from a friend's house, and kinda had a bit of a car accident... i drove into a creek. i've been all over PA seeing neurologists, some of the best in the state... it took awhile for them to isolate where in my brain they were coming from. they still don't know what's causing them. since then though, i've been on all kinds of medication, seen all kinds of side effects. so if there's any questions about anything, feel free to ask me... i'm willing to share my information. - Yeti Link to post Share on other sites
Heidi2 Posted September 11, 2003 Share Posted September 11, 2003 [color=darkred][/color] Doctors & nurses.... in my opinion get paid too much $$ to sit back & watch individuals' such as yourself ponder on whether or not something (medicine), is relevant for you to take or not.. I just hope for your well being that all works out for you.. Even if you have to do all the research yourself.... in knowing that you'll be just fine!!! Link to post Share on other sites
Author Patty Posted September 11, 2003 Author Share Posted September 11, 2003 Thanks so much everyone.What scares me is, I dont know what is wrong.I just hope I will be ok. Patty Link to post Share on other sites
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