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Should I try Dilantin?

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Posted 8/23/2006 6:07 PM (GMT 0)
I ended up in the ER for most of yesterday - AGAIN!  mad

Usually when I go, they pump me full of dilantin, along with giving valium and ativan to stop the seizures I'm having when I go in.  The ER doc wrote me a presciption for dilantin, but I'm not sure if I should try it.  I've been on lamictal for the last 2 1/2 years, but it's never really gotten the seizures under control, just helped ease the frequency.  I couldn't tolerate the side effects of depakote or gabitril, and I just recently tried keppra, but it made me lose a lot of weight (which I still haven't been able to gain back, so I'm still 5'5 and 110 lb which is ew skinny gross), and I couldn't sleep.  I'm willing to try it again, and just drink a ton of protein shakes or something.  I'm just worried about the dilantin, b/c I've heard some negative things about the side effects.  It seems to help a lot when they give me the mega dose in the ER, aside from it tearing up my stomach, so they have to give me other meds with it.  Can you guys give me some feed-back on it?  I haven't gotten a new neuro yet, b/c I just moved back, and the state disability hasn't kicked in yet.  I feel like it's up to me what to do, but I'm just worried dilantin will make things worse instead of better, and I'm already going through a lot right now. sad

Posted 8/24/2006 4:54 PM (GMT 0)
Well, I officially lost my job yesterday. I had to call in, b/c I was really unsteady on my feet, and throwing up most of the am b/c of the dilantin they gave me at the ER. I called to talk to my boss, and she said that maybe I started working too soon, and that I was hired on as a seasonal employee for back to school, and the job would have ended in a few weeks anyway. She said I could reapply later, after the meds get leveled out and the seizures under control. The only problem is, I WAS NOT hired on as seasonal, and if I hadn't had a seizure at work and freaked them all out, then I would probably still have my job. And even though it's not exactly the job I wanted to have, it was at least money coming in, and something to do that I'm good at! I don't know what to do right now. Can they do this? Is this the time of thing that the American's with Disabilities Act is supposed to prevent? B/c I seriously feel like I got screwed over.
Posted 8/24/2006 6:09 PM (GMT 0)

Hello Rogue,

Just to let you know I got fired from my job a few months ago from having a episode at work. I had a few in the past few years but we had a new HR & Manager and they said it was to much liability for them. I was a computer IT tech. I got a lawyer after this and nothing happened. They told me California where I live is pretty good to the employers and not the employees. He said we can sue them but most likely it would just be a fine to them and not a thing for me.

I did apply for SSI Disability because I cant drive or work. This was a few months ago and havent heard anything yet. I hope it goes ok.

I did take Dilantin a while back and it didnt help me at all. But everyone is diferent. They still are not sure if its 100% seizures, heart issues, or anxiety problems. The only thing I took so far that helps a little is Ativan a few times a day. I have taken Tegretol, Topomax, and a few others and none seemed to help alot.

Good Luck to you,
FEN

Posted 8/28/2006 2:43 PM (GMT 0)
Yeah, dilantin's not going so well.  It's making me lose coordination, so I'm walking around like I'm drunk again, and nauseaus and light-headed all the time.  State disability went through, so I can get into see a neurologist hopefully soon.  Right now my problems are mixed pretty evenly between seizures, heart problems and anxiety as well.

Posted 8/28/2006 5:43 PM (GMT 0)
I hope they find something for you !! I know how you feel. I just got my SSI app in hte mail on SAT and they turned me down!! They said I should still be able to work. Well why dont they tell that to the company that fired me for having a attack at work. And the doctor reports they got were from a Gen doc, ENT, and a hospital. The main doctors seeing me is a Neurologist and a Cardiologist. Why didnt they get a report from the ones that are treating me. Seems this SSI ONLY wants to help criminals and people that dont have problems. But us people that cant work or drive they just sweep under the rug, YES I am kinda mad and I did file a appeal. I am on State Disability till 12/31/2006 from the Cardiologist because he did a surgurey on me last month that he wants to monitor for at least 12 months he says. I guess that means nothing to SSI. What ashame that other countries treat their citizens better than USA. Im ashamed to live here now.

I hope everything works well with you :)  And me too of course :)

Robert (FEN)

Posted 8/28/2006 10:44 PM (GMT 0)
Side effects? Really? I been taking dilantin 100mg a three a day for the pass 6-8 months and I have not seen or been through any side effects yet. It controls seizures pretty good, but I do still have auras or partial seizures. I did not know that dilantin has side effects at all, so can anyone list up the side effects of taking dilantin? If for some reason I find something abnormal I could go get it checked up.
Posted 8/29/2006 11:38 AM (GMT 0)
Hi , I have been on dilantin for 45 years . So you can see it is a very old drug,and is effective with most patients, however, it does have side effects,which you should watch.

 1. Dilantin can affect your gums and cause them to swell,after a period of time, this happened to me and I take 1,000mg of vitamin c daily to help counteract this. My gums are still slightly swollen but not as bad as they would be without the vitamin c.

 2. You have to get the exact blood levels with dilantin, as to much can make you feel extremly dizzy,which I have found a couple of times. You need a nuerologist to help you work out the correct dosages.

 3. You should also have a liver test every 18months or so, Via a blood test, as dilantin also affects your liver.

  I have had surgery, and am hoping that dilantin will be one of the first drugs I start to reduce in 2007, if all is still ok.

  Dilantin is a very old drug , speak to a nuerologist and ask thier opinion-there are newer drugs which are equally as effective without the effects of dilantin.

  It is a good idea to establish a regular nuerologist so they get to understand your history and problem better, and what drugs  are effective for you and which ones are not.  Good Luck

               Aussie2006

Posted 8/30/2006 3:26 PM (GMT 0)
I stopped taking it two days ago. I'm much more like my own self. I usually don't tolerate any meds well, even if it's Nyquil, so I wasn't too surprised I was miserable for the week. It's been a better week seizure wise.
Posted 8/30/2006 6:25 PM (GMT 0)
Rogue & Fen.

 

Re employment, you guys got "screwed over".

 

I have 27 yrs of experience to draw from and was on Dilantin the whole time and there are side effects :

 ( different for everybody) but it's better than having constant seizures.

It does tend to slow you down or make you slurr your speech and look like you're drunk.

 

It is against the law for an employer to "FIRE" an employee due to a seizure condition.

It is a form of descrimination and against the Human Rights code and the federal constitution.

It is the responsibility of the employer to provide an adequate work area and supply special needs if required.

 

"By law the employer must provide adequate working conditions or supply special needs as/if required to effectively do the job, even if that means restructuring the work area".

However, if a case like that ever went to court, it would be awfully hard for anybody to prove that they were denied a job for THAT reason, therefore cases like that usually go unreported.

 

Although I'm from Canada and have worked for the federal Gov't for 30 yrs., this law is almost exactly the same.

  

Here is what happened to me:

 

My bosses thought that I was putting it on so I wouldn't have to do certain things. Through my employer (Government of Canada) they finally sent me to a "neuro/psyc" to examine me and DOCUMENT what I can/can't do. We have the right to request this type of exam, in MY case it was my employer that requested it. As a result of it being documented, my employer sent the results to "Health Canada" and since the job was being illiminated, the report showed that "as a result of the long term use of the meds, I could not learn new tasks "and requested that I go on DISABILITY and then medical retirement. That proved to my employer that I was telling the truth all along and NOT FAKING IT.

 

BTW ~ I had no trouble at all claiming Disability Insurance (or in the USA it's SSI I think)

That was 2 yrs. ago, now I'm on medical retirement with 2/3 of my pension and DI to top it up to my full pension.

My Neorologist just had to send in a medical for me and I got benefits the next week.

 

Randy

 

 

Posted 8/30/2006 8:42 PM (GMT 0)

RanMan,

Yeah it is SSI here in USA for disability, they take care of that. it took them 4 months to decide im not unhealthy enough to NOT work. Its not that I dont want to at all. I just lost my license and got fired from work. My job told me its to much liability to have me there. All I was is an IT tech, and do computer & Network stuff for the company. I went to two lawyers after this and they told me in California (Where I live) the laws are stronger for the company than the employee. So basicaly I am screwed. But I watch the news here in California and see they give SSI to BUMS, CHILD MOLESTORS, and free medical care to other people like this. But I've been working for over 20 years and have had this problem for a long time and I do qualify for SSI due to the amount of work I have done. But they dont think I am a sick enough person, so I guess I will comit crimes or something to feel like I fit in their screwed up society. Im sorry for sounding that way but it makes me mad when I have a honest condition and they dont care at all in USA. But USA says their a rich and powerfull country. LOLOLOL

And by the way I was on Dilantin for a long time and all it did was swell my gums a little. Dentists would know right off hand that I was on Dilatin when I was seen.

I appealed the SSI decision and will wait till I can write back to them. 1st I will tell them to GET ME A JOB being they are so dang smart. And being im so healthy they say I should be able to drive and do pretty much anything I want, at least I assume.

Funny part about my work is - When I have a seizure it lasts for a short time and I do have a arua before. I dont smoke or take breaks so I told the management that me having a seizure once a week is less time than the smokers or LONG break takers use up. And they didnt want to hear it at all. Oh well, my luck.

But if I had a 2nd chance I wish I was born in another country and not this Mickey Mouse of a country they call USA.

Thanks for reading,

FEN

Posted 8/31/2006 4:18 AM (GMT 0)

Fen,

I definately can relate, it's too bad that there is a "STIGMA" or certain "STEREOTYPING" that goes with this condition.

There seems to be a lack of public knowledge about epilepsy. When co-workers or superiors hear the word "epilepsy" they sort of get scared and don't know how they should react.

I agree that there are a lot of ppl out there collecting benefits that don't deserve them and I don't want to be painted with the same brush.

There still is a stigma attached to this condition but if you think about it it's no different than an employee having diabetes or a heart condition.

When I would have an aura, I would just freeze physically but was totally aware of what was going on aroud me but I couldn't respond.

My employer of 30 yrs was downsizing and my job was being eliminated, I fought for 4 years to stay employed ~ even at a lower level but I lost the fight, and since my medical report stated that due to long term use of meds (Dilantin) I did not have the learning ability to learn another job so they terminated my employment ~ 17 months short of 30 years which affected my pension but I was able to collect DI.

I felt I was still healthy enough to keep woking. Going on DI was not my choice ~ I WANTED to work.

Randy

Posted 8/31/2006 6:11 AM (GMT 0)
Rogue ...

I've taking Dilantin since 1971 for juvenile myoclonic epilepsy. I can't remember the original dosage, but now I'm on 300 mg a day and 500 mg of Lamictal a day. I know of the side effects ( gum stuff, staggering gait, slurring speech, and so on), I've had the staggering gait and slurred speech, but I figure if it keeps me off the floor, anything short of growing a third eye is worth it. Then again, if that third eye weren't nearsighted or need bifocals, then that might be a good thing. hahaha

Anyway, about 6 weeks ago, my dr increased the dilantin to 400 mg a day.Got dizzy beyond belief. went back to 300, arms started jerking in the middle of the day, went back to 400 and the dizziness returned. The upshot is I've gone back to 300 and now will spend a glorious day to three days in the local monitoring unit.

Dilantin has it goods and bads, just like any medicine. I hope things work out for you.
Posted 8/31/2006 6:12 AM (GMT 0)
Rogue ...

I've taking Dilantin since 1971 for juvenile myoclonic epilepsy. I can't remember the original dosage, but now I'm on 300 mg a day and 500 mg of Lamictal a day. I know of the side effects ( gum stuff, staggering gait, slurring speech, and so on), I've had the staggering gait and slurred speech, but I figure if it keeps me off the floor, anything short of growing a third eye is worth it. Then again, if that third eye weren't nearsighted or need bifocals, then that might be a good thing. hahaha

Anyway, about 6 weeks ago, my dr increased the dilantin to 400 mg a day.Got dizzy beyond belief. went back to 300, arms started jerking in the middle of the day, went back to 400 and the dizziness returned. The upshot is I've gone back to 300 and now will spend a glorious day to three days in the local monitoring unit.

Dilantin has it goods and bads, just like any medicine. I hope things work out for you.
Posted 8/31/2006 4:14 PM (GMT 0)

When I was on Dilantin the only issue I had was the gums, so not to bad. But it didnt control the seizures to well. I was also on at times. Tegretol, Topomax, Neuorontin, and a few others. And the funny part is now Im taking Ativan which does help for seizures and that doesnt control it 100% but at least 80%. I have not yet found a medicine that will give me 100% control. I pray and wish that one day I will.

But to RanMan,

I totally understand the word Seizure/Epilepsy freaks out people. I dont know why that here in USA they take your license away for seizures but NOT for heart attacks, strokes, and many other ailments. I lost my license a total of 4 times and got it back those times, but I NEVER had a accident due to a seizure. In studies there are more accidents due to cell phone talking, Heart attacks, Strokes, and even smoking. Pretty funny if you ask me.

But I will never understand why people freak out at the "Hearing of the word Seizure/Epilepsy" when trying to get a job. I have a degree in computers and can work better than the next man but Im cursed I guess. Maybe one day I will get good luck. I was lucky once and had a job for 9 years at one place. When I had a episode there they acted like they cared and took good care of me and really made sure I was fine before I started working again. That was the only job I had like that. To bad they are not around anymore. I was a Computer Admin there.

Good luck all and have a great day,
Robert (FEN)

Posted 9/8/2006 12:22 AM (GMT 0)
I was on Dilantin and it did effect my gums some. I would make sure that the doctor knows all the problems it is causing you. It is a very old drug and there are alot of news one out there. I hope everything works out for you.

Ken
Posted 9/10/2006 4:21 AM (GMT 0)
I'm glad I've stopped taking it.
I feel the same way about seizures being like diabetes. I very much dislike being treated differently. You don't lose a job b/c you have a problem with your sugar levels one day at work, and yet you have a seizure and you're considered a liablity. I did get the state disability, and am considered 'unable' to work until february, when they'll review the case. In the meantime, I've been looking into taking some classes online.
Posted 9/14/2006 2:20 AM (GMT 0)
I too, WAS on Dilantin! I was o 320mg/day(160mg x 2/day) as well as Epilim(valporate) 2000mg/day(500 x 4/day) & Tegretol 1200mg (400mg x 2/day). Now I am on Tegretol only(400mg x 1/day)!! I had brain surgery last year (July) & everything went well!! I am here to tell you there is hope!! Don't give up, keep looking-is surgery an option? maggie28
Posted 9/14/2006 6:19 PM (GMT 0)
I'm back on dilantin for another go around. I ended up in the ER again Sunday (good grief, it seems like I type 'I ended up in the ER again' an awful lot). I hate it, and I think I really would rather end up having the seizures, but I promised to at least try it until October 4th, when I have my next neurology appt. I've been so out of it; sleeping all day, passing out really easily, can't think straight, no coordination so I'm walking around drunk. I'm suppossed to be filling out apps for school, and I can't even sit up straight for more than about an hour and a half. UUUGGGHHH!!! Just 2 1/2 weeks - that's all I have to make it. Maybe it'll get a lot better, and this will be the last med I have to try. If that's the case, then it's worth it.
Posted 9/16/2006 4:08 PM (GMT 0)
Yes give it some time. It may take a little time before you drungs starte to help you. I just hope everthing works you for you.

A freind
Ken
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