Can you see the steam coming out of my ears?

By Raz
@razcal2267 (15577)
United States
June 7, 2007 7:20pm CST
I am so angry right now I can not even see straight. I answered a discussion earlier today about brand name verses generic medication and some judgmental(yeah, that is the word I will go with)put in their two cents and basically told me that I am a liar, was given the wrong medication, and that there is no difference at all between any brand name and generic medications. Now I am all for buying the store brand stuff to save myself money but when it comes to me flapping around like a fish out of water I will not compromise. My experience with the generic Dilantin is simple. My doctor forgot to fill in the little box that needs to be filled in order to get the brand name. He also changed my dose so I knew the medication would look differently. I was taking the medication for about a week before I started to have seizures which I had not had in years thanks to this doctor finding the right medication and dose that works for me. I called him right after I called my parents when I had my first seizure and he told me to go get blood work done. I did and he called me two days and five seizures later to tell me that my blood levels dropped from 13.4 (normal for me)to 3.8. He told me to look at the pills and asked if it actually said Dilantin and when I said no he told me to bring him the bottle that day. After that he told me that I had been taking the generic and that he had some other patients that were having the same issue with the non name brand. It is now six years and many combinations of medication tried and failed later and I am just on Dilantin now. I only have a seizure once a month around PMS time. How dare this person, stranger, tell me that I am making it up and much have been taking the wrong medication when they do not know me, my story or my history with the medication. Ugh! I am so angry right now! I just want to scream.
12 people like this
20 responses
@mamacathie (3930)
• United States
8 Jun 07
Well, scream to me! I would think you know your body better than anyone else. Different ingredients in these meds cause our bodies to react in different ways. Just take a deep breath and realize that you know yourself better than anyone else, no matter what anyone else says.
5 people like this
@razcal2267 (15577)
• United States
8 Jun 07
Yes mom. I am trying to calm down. After all it was a stranger that made the ridiculous judgments. I have been through so much with the epilepsy since the generic disaster that it rubs me the wrong when when I am told I am buying into what the pharmacies want me to believe so I will spend more.
4 people like this
@emeraldisle (13158)
• United States
8 Jun 07
I know many people the generic of a med doesn't work as well. What most don't realize is that the active ingredients could be the same but the inactive can be different, and that can really change how the medication works. Also some medications the generic is a different medication, similar or is supposed to treat the same thing but different medication. You had every right to be angry. The person was out of line to put it in such a way. Yes I have seen pharmacies make mistakes but you had pointed out in your post that it was not that type of situation. I went in and added my 2 cents worth. Doubt the poster will care but that is beside the point. I wanted to indicate that he obviously didn't know everything.
@razcal2267 (15577)
• United States
8 Jun 07
Big hugs for that post you made. I was too angry to go back and say what I wanted to but I do not have to now as you stated it all and ion a much better way then I could have. I have seen pharmacies make mistakes also like the time they tried to give me Tegretol (which I am allergic to) instead of Dilantin. I do not think he/she will care either but I thank you for doing so.
2 people like this
@emeraldisle (13158)
• United States
8 Jun 07
You are quite welcome and I'm glad I could help. I've had a lot of problems due to medications and I know how miserable they can mess things up when the inactive ingredient doesn't work well with you. I'm glad I could say it in a way that made sense. Hopefully it will to them as well. Hopefully they never have to find out just how much those inactive ingredients can change a medication.
1 person likes this
• Canada
8 Jun 07
i understand how you feel. but dont let one so called judgemental jerk get you mad.you know what you were talking about and it happens more then people know
3 people like this
@razcal2267 (15577)
• United States
8 Jun 07
I'm good now. After I posted this discussion I came across a discussion about just how stupid people can be and it made me actually laugh out loud.
2 people like this
• United States
8 Jun 07
I think there are some people on the boards that plain and simple like to cause trouble. They are harsh beyond reason with their words and set no limits for themselves. Maybe it makes them feel more important to knock people down. Don't let it get you too upset, everyone intelligent person in the world knows there is a difference between the real deal and generic otherwise there wouldn't be the little box for the doctor to make note of, right?
2 people like this
@razcal2267 (15577)
• United States
12 Jun 07
I agree with you that there are some that do like to stir up trouble but I think that this time the person was just not informed enough.
@winky73 (1396)
• United States
8 Jun 07
Well you have every right to be angry about that....I know I don't like being called a liar either.I don't know why people can't say what they have to say about something without telling you that what you said can't be true.I've never had any problems with generic brand meds....but that doesn't mean it could not happen to someone els. I hope you told them what you thought about their little comment...I know I would have.
2 people like this
@razcal2267 (15577)
• United States
12 Jun 07
I told them a few things but someone else gave them the facts to back it up as I was too angry at the time to even think to do so.
• United States
8 Jun 07
Go ahead and scream. And then go tell the person that called you a liar that you are not and he/she is very wrong. There is a difference in some generic medications. It may be just a subtle difference but it affects people in different ways. And if you get your medications filled at the same pharmacy every month, they should have known to call the doctors office and question the change. And you can tell the person that called you a liar, that you got this information from a nurse.
2 people like this
@razcal2267 (15577)
• United States
12 Jun 07
Yes, the pharmacy should have caught it but they did not.
@Thoroughrob (11771)
• United States
8 Jun 07
Calm down, take a chill pill before you send yourself into another seizure. I definitely would not take that med. again and I am sure that person did not mean to come across as mean and terrible as it sounded. Try not to get too upset. I am sorry that you had to go through all of that.
2 people like this
@razcal2267 (15577)
• United States
8 Jun 07
I am pretty sure that this person did mean to come across as condescending as I read some more of their posts to see if they are always so rude and snippy and it seems that they are. You are right though no need to trigger a seizure due to an anger level from a strangers comments.
1 person likes this
@Dumpertaker (1189)
20 Jun 07
Maybe I'm wrong but we do not have this kind of problem here in the UK, you get the medication you need plain and simple, but I think the peron or persons who were judgemental were out of line, they do not know you and cannot say you are making it up...you know the situation and they do not. It sounds like it may have been a dodgy batch of medication, which could happen with generic or named brands. I also understand why you would want the named brand medication as you know you can rely on it. I hope that is not taken the wrong way, as no offence was meant and it is just a possible explination. I never thought about hormones affecting your siezures (you saying about having a siezure during PMS time) but I guess anything that alters in the body could trigger them.
1 person likes this
@razcal2267 (15577)
• United States
20 Jun 07
When we need a certain medication more times then not we can get it but it takes time to fill out all the paper work that the offices want to prove that we need it. It might have been because of a bad batch but there were other people complaining and not just to my doctor that now there is not all the garbage to fill out if you need the name brand, just a letter from your doctor will do. I have a friend that only has catamenial seizures. http://professionals.epilepsy.com/page/catamenial_patterns.html
20 Jun 07
It amazes me how much paperwork you need to sort out for medcial stuff! Thankyou for the link to the information, it's true that you learn a new thing every day.
1 person likes this
@razcal2267 (15577)
• United States
20 Jun 07
If you think it amazes you just imagine being the one that has to fill out all the paper work saying that you need a certain medication. You are welcome for the link. I hope you find it informative.
@charms88 (7546)
• Philippines
8 Jun 07
Hi razcal. Calm down...I can feel the fire breathing out of your mouth. I'm sorry to hear that you were subjected to close minded poster. I have come across posters like that and I refused to stoop down to their level. We all have our own reason and opinions and I just hope everyone know how to show a little respect. I don't buy generic medications either. I have tried it once before but the effect is not as good as the branded one. I would gladly buy the generic one since its cheaper but we both know the quality is not that good. This stranger shouldn't judged you easily like that. I don't understand why some members needed to resort to nastiness when disagreeing with our response. Don't take this thing too personally. I'm already numbed with it.
@razcal2267 (15577)
• United States
8 Jun 07
I do not mind generic IF if works. I have been on many generic medication both over the counter and prescribed but with this one brand I have had very ill effects when I was given the generic. I may be wrong flapping around like a fish outta water and then getting a headache so bad that all you can do is cry from the pain and throw up might be fun to some but it is not my idea of a good time. I know I should not let the stupid I mean ill informed get to me but sometimes I can not help it.
@charms88 (7546)
• Philippines
8 Jun 07
I can understand what you're feeling. I have my fair share of this nastiness too. I really need to sharpen my fangs more, LOL!
1 person likes this
@razcal2267 (15577)
• United States
8 Jun 07
Oh no sharp fangs. I am going to hide now. :D
@Debs_place (10551)
• United States
20 Jun 07
Wow, I think we had this conversation before, but I went to a neurologist that would not prescribe generic. He felt that they were not of the same quality as the name brand. Now I must admit, I go for generic tylenol etc but when it comes to anti-convulsants...I would go with the name brand.
1 person likes this
@razcal2267 (15577)
• United States
20 Jun 07
I would be happy to take the generic of all medication if I Cord grantee that they would work the same as the name brand. Unfortunately I had to find out the hard way that not all of them do.
@wolfie34 (26881)
• United Kingdom
8 Jun 07
Please feel free to let out a rip roaring SCREAM! I certainly feel this way after the gutful I've had this week. Hopefully by now you've cooled down and realized it's you that in the right and their response is totally unjustified, unwanted and ignored! You're better than that, I use the boxing punch bag at the gym to release my anger!
1 person likes this
@razcal2267 (15577)
• United States
8 Jun 07
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHH! No, really I have cooled down now but it does bother me that someone can be that misinformed and narrow minded.
• United States
8 Jun 07
The person who called you anything is an idiot. Generic is okay in some instances, but it also depends on where the generic came from. The carrier that holds the core med is usually different from the name brand, & has been known in a lot of instances to cause problems. I am glad you got it straightened out. You can't go by a lot of the people on any site, because they may just have their own heads up their own butts. That is what I have seen anyway! If you ever have ANY question about the way a med looks, or what is on the label, CALL THE DOC before you take it! Mistakes happen all the time & you don't want to find out too late. That is good advise for ANY med! I am an expired emt.
1 person likes this
@razcal2267 (15577)
• United States
13 Jun 07
To tell you the truth I did not even notice there was a difference in the medication because I was clueless that the difference I would have seen was that the name brand had the word Dilantin on it while the generic looked the same but did not have the word Dilantin printed on it. I now am very aware of it and will never take anything but that again.
@teleios (738)
• Philippines
8 Jun 07
don't let that person's comments get to you. he may be entitled to his own opinion but you know that its a biased one since he doesn't know you. anyway, you know what happened and its your body. don't let his comments ruin the rest of your day. its not worth it ;)
@razcal2267 (15577)
• United States
9 Jun 07
You are right. It was not worth it.
• United States
8 Jun 07
Thank goodness your doctor knew and cared enough to figure out what was wrong. So sorry to hear about the problems you have been having.
1 person likes this
@razcal2267 (15577)
• United States
9 Jun 07
Yeah I know. I am glad I have a doctor that knows the right questions to ask and how to get things done.
@sunshinecup (7882)
8 Jun 07
Honey, don't worry about the nuts on here. I can tell you what you are saying is the truth cause my brother-n-law ,who has seizures due to a head injury almost 20 years ago, just experienced the same thing. This wasn't the first time either. ANYTIME he has been put on a generic prescription for Dilantin this will happen. Also my brother had the same problem once for the same reason. Just blow this idiot out of your mind and don't give them a second thought. They apparently think they are a know it all and if you let them talk enough, everyone will see they really know very little.
1 person likes this
@razcal2267 (15577)
• United States
8 Jun 07
I do not worry about the nuts but it seems some are able to push my buttons. I am sorry to hear that your brother-in-law and brother have both have similar experiences.
@Rozie37 (15505)
• Turkmenistan
8 Jun 07
Your point at the end was going to be my point. Why let a stranger have your day? This person does not even know you. Don't let them upset you, you are giving this person too much control. Some people are jerks and they don't even realize it. People who are like that, I don't even waste my time on. They are not worth it. The only one that knows you better than you, is God. As long as he does not have a problem with you, disreguard anything anyone else has to say.
@razcal2267 (15577)
• United States
8 Jun 07
That can be easier said then done sometimes.
@GardenGerty (90967)
• Marion, Kansas
8 Jun 07
Okay, you have permission to scream. If your doctor believes you, then a total stranger should not doubt you. Lets see, doctor, who knows you, sees you regularly, and treats other people with epilepsy or total stranger, on a forum, who will probably never meet you in person, and likely is not a doctor. Hum, I think I have to go with what the doctor says, and not try to tell razcal it is all in her head. Besides being rude, it is just not right. I have had good luck with most generic and store brand everything, but, I do not have a serious medical condition. Are you through with that scream yet?
@razcal2267 (15577)
• United States
8 Jun 07
Why thank you. I have taken and will still take many generic medications but with this one kind I had a very bad reaction and do not appreciate someone telling me "oh well you were taking the wrong medication and all generic are exactly the same as the name brand." Yes, I am done with me scream.
@clownfish (3278)
• United States
8 Jun 07
Hi, Razcal! Actually, there is a difference between generics and brand name medications. It's not the ingredients that are patented, it's the way the ingredients are formulated to make the medicine work that's patented. So, a generic may contain the same ingredients but isn't manufactured the same way the brand name medication is, so it very well may not be as effective as the original brand name stuff. You are right to want the brand name meds! People are just so infuriating!
@razcal2267 (15577)
• United States
8 Jun 07
I know that what you said is true I was just too angry at the lack of knowledge this "person" had on the subject yet was spouting off that I could not state any of that . Luckily there are cooler heads that prevail like you, hockeygal and emerald.
@TerryZ (22146)
• United States
8 Jun 07
Wow thats a good thing the doctor figured that out about the generic brand. Listen dont worry about about that person not believing you. You know the truth and thats all that should matter.Im why the heck would lie about something like that. Go ahead and scream. I believe you.
@razcal2267 (15577)
• United States
8 Jun 07
Yeah, my neurologist is a good guy and a great doctor. I have been going to him since I was 21 and do not know what I will do when he retires. No need to scream anymore because you have all pointed out that as long as I know the truth I can not let some ill or non informed fool get to me. I just can't help it sometimes though.
@crazynurse (7510)
• United States
8 Jun 07
hi razcal. While with most medications using the generic is no problem, there are some that it does seem to matter. Some medications require such a fine-tuned blood level that to even switch betwen BRANDS of the REAL medicaiton causes a problem! A classical example is Lithium. Here is a website that confirms that Dilantin is also one of those medicaitons! I didn't see the original discussion or I would have posted in it yesterday http://www.epilepsy.com/medications/b_phenytoin_intro.html
@razcal2267 (15577)
• United States
8 Jun 07
Thank you. I think hat is one of the links that I posted as reference in that discussion but mylot does not like me right now and I can not check. Thank you for adding the link and the information you know.