 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / July 2004Getting of Dlantin
I was on Dilantin since 1992. I took 2(200 mg) capsules every night. I never had any "fits" during these years. In 2001, my doctor felt that I should stop taking it and I stopped it. A few days after that I suffered the fits again. It happened on a day when I picked up the phone and received unpleasant news. Though I don't think it was a reason for the attack. I was back on Dilantin this time 3 and then reduced to 2 a day. The reduction was done after checking my blood levels. Ezactly one year (2002) later I suffered again, the same procedures were applied. First 3 then 2 according to blood levels. Since then I have been taking 2 a day, It has been more than 2 years Today I met with the neruologist and he has suggessted to reduce the dosage and then stop taking it. I want to do it too but I am quite hesitant. This dosage have affected my gums for which I take folic acid once every day. Any suggestions or advice would be greatly apprecaited Thanks > I was on Dilantin since 1992. I took 2(200 mg) capsules every night. > [quoted text clipped - 23 lines] > > Thanks It appears that you have been doing this procedures for years now and it seems that it does not really work as the seizures still come back :-( I do not know what kind of seizures you have, but I can imagine that a bad situation can occur which cause you to hurt yourself badly when you are not treated for these seizures anymore. To me it looks like you will never be able to reduce the dosage without getting the seizures back, but it may worth trying still of course -especially when the seizures are not that bad to coop with. I completely agree with you that this is a difficult decision you and your neurologist will have to make. Good luck.  SignatureTake care. Bye, Marco There is one simple old saying that comes to mind when I read your post. It is one I have told my Doctors in the past and they did not listen so now I tell them in a way they usually don't like but they do listen. "IF IT ISN'T BROKE DON'T FIX IT!" I had a Dr come to me once and say she did not like the meds I was on and she was going to change them. I had been seizure free for 20+ years so she started changing, wanna take a guess what happened? I stated having seizures. She tried getting me back on the same dosage I was on before, it would no longer work. So what does she do, reports me to the DMV and causes me to lose my drivers license and my job all in one phone call. Thank you and if anyone reading this is in Daytona Beach Florida her name is DR Derbenewick. She and her husband are both Neuros. So if you do not feel comfortable being taken off your meds tell your doctor that, if he still wants to take you off them simply find another doctor that will work for you not against you. Remember, you hired that doctor so you are the ultimate boss. A doctor cannot make you do anything you do not want to do. I am not going to get started on doctors because I do not have a lot good to say about that profession in general. SignatureI wish you all the best Tim W www.onepest.com > I had a Dr come to me once and say she did not like the meds I was on > and she was going to change them. I had been seizure free for 20+ [quoted text clipped - 5 lines] > Beach Florida her name is DR Derbenewick. She and her husband are both > Neuros. I dont live in Florida so I dont know the laws there. But since your seizure was the direct result of medicine changes made by the doctor, there should be grounds for challenging licence suspension (though I figure you got it back by now anyways). Did your job require driving? > I dont live in Florida so I dont know the laws there. But since your > seizure was the direct result of medicine changes made by the doctor, [quoted text clipped - 3 lines] > > Did your job require driving? She was protected by the same Law that screwed me. She was allowed to report her patients to the DMV for having seizures however she said she was required by law to report them. I could not find a lawyer to take her to court because she was such a prominent Neuro. I did get my license back after a TWO YEAR waiting period. Funny thing is now that I own my own business I no longer drive, I hire a driver to take me where I need to go. He also is a worker as well. It isn't that I am not supposed to be driving it is just with the current changing of my med's to the Topamax I am not sure what to expect so I am not driving. Yes the job I had at the time she reported me required me to drive. I was then a Pest Control Technician, Hell now I own a Company. SignatureI wish you all the best Tim W www.onepest.com > Yes the job I had at the time she reported me required me to drive. I was > then a Pest Control Technician, Hell now I own a Company. Thats very cool. I just got 'the call' today from my relatively new doctor about the same requirement. Not sure what I am going to do yet, but I am unemployed anyways... not that it makes it much better. To be fair to doctors however I know they must be careful. However I was awfully upset the first time I was suspended. If the law says they must do something, and dont, they could lose everything. The last time I was reported the DMV was nice enough and allowed me to work something out since the GM (I guess its shortened to that here) was directly caused by a medicine change that didnt take hold... and so long as it was definately an aberation that was dealt with quickly. In your case it sounds like it eventually worked out very much in your favor. You lost your licence and later became your own boss. Heres to continued success for you :-) >> I dont live in Florida so I dont know the laws there. But since your >> seizure was the direct result of medicine changes made by the doctor, [quoted text clipped - 17 lines] > Yes the job I had at the time she reported me required me to drive. I > was then a Pest Control Technician, Hell now I own a Company. Great to read that you have sorted things out by setting up your own Company. I guess you now drive in a Limo? (hehehe) :-) SignatureTake care. Bye, Marco > Great to read that you have sorted things out by setting up your own > Company. I guess you now drive in a Limo? (hehehe) :-) Yeah a stretched out Hummer.....I can wish can't I? My limo is a Ford Ranger. But wait a minute I am from the redneck armpit of the world West Virginia and a Ford Ranger is a limo here...hahaha I have had my ups and downs and a lot of them have been drug induced. I only wish I could really let you folks know how I feel at this moment in time. I was thinking just yesterday and I have been posting some wrong information here. I suppose I should apologize. What has happened is this. I have not been having seizures and thought it has been a little over a week but I have lost track of time. I have been enjoying the time I have not been seizing that I lost track, today is my two week anniversary. So I have been saying all along that I have been about 7 or 8 days when it is 14 days today. God it is great. I used to get seriously pissed off when people talked about us having fits, or spells, or whatever you call them. I have learned from you folks that it is ok. I always took offense when someone said "you mean you have fits?" I no longer get upset. I would get so upset when they would talk about taking our drivers license, I no longer worry about that because I am settled with the fact that if it happens that I can never drive again then it happens. I have to worry about myself and the safety of others if I choose to drive and have an accident and would hurt myself or someone else. I recently had a traffic accident but the seizures had nothing to do with it. The accident was back before the changing of my meds. I hit some dirt and gravel on the road and totaled one of my company trucks. I have pictures of it on my website if you want to go look. Go to the site and click on the link that says website features and you will see the truck wreck pics. It just is not worth driving if seizures are active. Now even with all that said I still must take a stand and say I do not support the laws the way they are written. They are written to encourage you and me to lie to our DRs and say we are not having any problems, we are seizure free so we can keep our DL. What we need to do is not have to worry about losing our privilege and still get help from the DRs. So to end I will say this If I ever get a real Limo I will post a picture of it here....but I don't see that happening unless I find a damn good deal on eBay. As I always like to say..... I wish you all the best Tim W www.onepest.com > Now even with all that said I still must take a stand and say I do not > support the laws the way they are written. They are written to > encourage you and me to lie to our DRs and say we are not having any > problems, we are seizure free so we can keep our DL. What we need to > do is not have to worry about losing our privilege and still get help > from the DRs. This is true. I understand the rationale. Thing is, if we get hazy, its a medical problem so we should tell our doctors. If a drunk blacks out, its not, and nobody who does so is going to tell a doctor. And drunk driving is a much more serious problem. Thats what bugs me. When its alcohol related, in effect people innocent until proven guilty "while driving" (an important distinction). We dont have that right. While I understand why the law exists, I wont fully agree with it until people who get drunk by choice and black out, no matter where they are, also face suspension. OK thats all done :-) Speaking of Dilantin. At my doctor appointment with my epileptologist this afternoon, I complained again about the pain that develops in my arms & legs at night. This has been going on for well over a year and the pain has been getting unbearable. He finally told me that it could be a side-effect from the Phenobarbital that I take and that effects "2-3%" of the population. Maybe that's it, who knows? So I'm sitting here with the option of switching over to Dilantin and stopping the Phenobarbital. It will take a month for the full switchover. I have the doctor's prescription and can fill it any time I choose and begin the process. Would I be making a mistake? Opinions? Benefits vs. downside? Bob > So I'm sitting here with the option of switching over to Dilantin and > stopping [quoted text clipped - 5 lines] > > Opinions? Benefits vs. downside? Would you be making a mistake? That is something that only you will be able to come back here and tell us at a later time. I can say this however, it took me only a short 32 years to find out it was a mistake for me, and I am ever so glad the mistake is over. Didn't your DR discuss any other options with you in regards to other meds? There are way better in my honest opinion. But like I have said before I am not a DR I am a bug guy. So the ultimate decision is up to you. I could not tolerate the swelling of the gums and the bleeding. Today for the first time in years I ate lunch and ordered a sandwich, Hot Ham and Cheese on a toasted bun. I have not been able to eat anything on a toasted bun because it would always make my gums bleed. I ate this today and not one drop of blood. Benefits of Dilantin.... It is the cheapest of all, or very close to the cheapest of all epi meds. SignatureI wish you all the best Tim W www.onepest.com > > So I'm sitting here with the option of switching over to Dilantin and > stopping [quoted text clipped - 8 lines] > Would you be making a mistake? That is something that only you will be able > to come back here and tell us at a later time. I'm hoping not to be reporting mistakes by being careful about what I do.. > I can say this however, it > took me only a short 32 years to find out it was a mistake for me, and I am > ever so glad the mistake is over. Didn't your DR discuss any other options > with you in regards to other meds? There are way better in my honest > opinion. But like I have said before I am not a DR I am a bug guy. So the > ultimate decision is up to you. I've previously tried Keppra, Tegretol. Lamictal, & Primizone without success. He went through a complete chart of AED's with me and the choices were either ones that I've already had no luck with or not ones that he would prescribe for my type of epilepsy. > I could not tolerate the swelling of the > gums and the bleeding. Today for the first time in years I ate lunch and > ordered a sandwich, Hot Ham and Cheese on a toasted bun. I have not been > able to eat anything on a toasted bun because it would always make my gums > bleed. I ate this today and not one drop of blood. Did the problem with the gums develop immediately or did it take several years? > Benefits of Dilantin.... It is the cheapest of all, or very close to the > cheapest of all epi meds. Phenobarbital is real cheap too. They should all be that way!<g> > I wish you all the best Many thanks, Tim! Your comments are exactly the sort of thing that I'm looking for. > Tim W > > www.onepest.com Bob > Did the problem with the gums develop immediately or did it take several > years? [quoted text clipped - 3 lines] > > Phenobarbital is real cheap too. They should all be that way!<g> I wish they were all as cheap as those two. By chance did he mention Topamax? If he did what was his reasoning for not wanting to put you on it? Could it be that it maybe it does not control your type of seizures, or does he think you may not be able to tolerate it? I know I heard all the horror stories from others that had been on it without any luck and it scared me but my thought was what the hell..... I have to do something and from what I could find out it was the best being offered. I found a doctor to offer it to me and I tried it. Was it easy hell no it was hard at first. It made me sick at times and once I even doubled my script my mistake that was a day that will live in infamy. I am now on my full dosage and have no adverse side effects that I can tell you about except that today I was in a doctors office spraying for ants and decided to step on some scales and to my surprise I have lost 7 pounds. Yeah. I would recommend it to anyone, but I would have to tell them to beware that it is a hard drug to get acclimated to and once you do it is a good drug to control, or at least it has been for me. About the swelling, no it did not take several years to develop it was fairly soon, I really can't say how long because it was 32 years ago when I started taking it so I don't remember exactly. I do know that it was within a year that I noticed the bleeding of the gums and the swelling was soon to follow so I would say easily within a couple of years. It did get worse the older I got. Anymore questions feel free to ask them, if I can't answer them, and I am sure I can't answer them all, someone else here will. SignatureI wish you all the best Tim W www.onepest.com > By chance did he mention > Topamax? If he did what was his reasoning for not wanting to put you on it? > Could it be that it maybe it does not control your type of seizures, or does > he think you may not be able to tolerate it? I can't give you a good answer to that, especially since my short-term memory has been effected by all of this. It was getting towards the end of my 1/2 hr appointment and he had a large chart with all of the AED's with words & pictures that he leaned across the desk and put in front of me. As he rapidly went from top to bottom, he pointed to each drug and made some comment to the effect that (1) "you wouldn't want this one" or (2) "you've already tried this one" or (3) "this one isn't right for you". I think that Topomax might have been a (1), but I'm not certain. I have Simple & Complex Partials from TLE and it was either (1) or (3). > I know I heard all the horror > stories from others that had been on it without any luck and it scared me [quoted text clipped - 9 lines] > to and once you do it is a good drug to control, or at least it has been for > me. That's great! Glad to hear it's worked out well for you! > About the swelling, no it did not take several years to develop it was > fairly soon, I really can't say how long because it was 32 years ago when I > started taking it so I don't remember exactly. I know that memory feeling. :-) > I do know that it was within > a year that I noticed the bleeding of the gums and the swelling was soon to > follow so I would say easily within a couple of years. It did get worse the > older I got. I've already had gum problems in the past and had my gums surgically trimmed, so that's a serious consideration since they bleed some right now when I brush. That dental surgery was before I was diagnosed & treated for E. > Anymore questions feel free to ask them, if I can't answer them, and I am > sure I can't answer them all, someone else here will. Thanks! I appreciate your help. Bob
|
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.