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Old 10-28-2005, 07:58 AM
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Can any body help? are these side effects of medications

Please can you possibly assist me as I suffer from epilepsy & am taking medication, Sodium Valproate(Epilim)2000mg & Phenytoin 300mg daily.
The problem is that I have developed a tremor(shaking) and painfull and tense feeling in my right hand, which makes certain things such as writing and holding a glass difficult & uncomfortable, due to shaking of hand.
I have asked my GP to refer me to a consultant as it is concerning me as I do not know if its related to my medication or another illness.
The problem is that my GP does not know who to refer me to.
Please can you tell me if there is a known side effect such as this tremor in my hand with the medication above, & if any body suffers a similar problem. I also have noticed since increasing my medication approx 8-12 months ago that my memory is bad and I have experienced the problem that when in a conversation etc the particular precise word "seems to be on tip of my tongue" as the saying goes. Does anyone else experience this or similar.[/u]
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Old 10-28-2005, 11:24 AM
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Welcome books,

Here are the links to the info sheets on the meds you are taking' Since Phenytoin has several makers and the generic version may not be as effective.

We are not doctors and cannot diagnose your symptoms, however I can tell you of my own experiance with these medications. The shaking right hand is something I also have. (Itake 400mg Dilantin) It ia a mild and intermiten tremor.
Dilantin effects my speech. Its call aphasia and a real pain. It causes loss of words, slurring.

Do you have an Epiologist(simple partial) or a Neurologist? They are much better in the care of seizure disorders than GP's are.

You really need to be evaluated by a professional to rule out other medical problems vs. drug reaction.

"If you are going through hell, keep going."
(Sir Winston Churchill, 1874-1965)

“You've gotta dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.”

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Old 10-30-2005, 04:36 PM
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Book, IMO

Trembelling is one side effect from phenytoin.
It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.

I also want to say that I've been on this drug since 1979 and now I have my blood monitored weekly and my liver is in good shape.
I see the dentist every 3 months rather than the usual 6 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.

I do however have unwanted hair growth (legs, arms, chest, back,) but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.

I've noticed other side effects such as stigma (simple partial) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile disfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired.

Taking the anti-epileptic drug's for seizure control is a huge trade off.
I have experienced severe memory loss and poor recall, very embarassing when your in a conversation .

My manual dexterity in my hands and fingers is very poor as a result of the long term use of meds.
I had to give up my music teaching 26yrs ago as a result of my poor dexterity and coordination, but my seizures are under control. It's a HUGE tradeoff.

My name is Randy, I'm Canadian. Music runs in my family and starting from age 9, I was playing drums and guitar with proffesional bands. Up until age 21 (1979) I was a singer/songwriter, music teacher and a studio musician. My only dream in life was to make a good living with my music. (I also developed Ulcerative Colitis at the same time, the Docs. say the two are connected)

Well, all that had to come to a stop. I was sitting at my desk at my P/T job when I had my first seizure. All I remember from that point on was waking up in the ambulance on the way to the hosp. After going through several tests and then seeing a neurologist, the tests showed that there was epileptic activity in my lower tempral lobe. He then persribed Dilantin (phenytoin)and Pheonobarb (still on today) and the seizures were under control. I was even able to keep my drivers licence.

One major problem though, the pills were severely messing up my co-ordination. I walked like a drunk, slurred my speech, my own family was embarassed to be seen with me.

Since my co-ordination was so bad, I could no longer play guitar or drums and I had to give up teaching.

I was so depressed, I could no longer fulfill my dream, now what was I going to do.
I had to make a career change. I was putting in job applications all over but I had no other experience.

Finally I got hired on by the Federal Government as a courier and mail clerk. I worked my way up to Administraion Manager for the Unemployment Insurance Office for 21 years and then 9 years with Veterans Affairs.
My condition was getting worse with age, no seizures but the meds were blocking my learning ability so I couldn't take on extra duties.
As a result of this, my employer(The Government of Canada)
put me on medical retirement last year (I'm oly 4 but after my disability insurance runs out.

I had to learn to live with my disability and work around it.


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

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Old 11-05-2005, 05:19 AM
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Hi books, welcome to the forum!

You might try switching from the generic phenytoin to the brand name Dilantin. The cost differential is likely neglible and most insurers will cover it if your doc prescribes it as required.

It is my understanding that many people have experienced greater side effects and more unpredictable blood absorbtion with the generic version than the brand name.
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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Old 01-21-2006, 07:07 PM
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hand tremors

I sometimes get hand tremors myself. Never bad ones, but enough to where it messes up my handwriting sometimes. I've found that if I take time and relax, breathe deeply and slowly and stay focused, it's less frequent. The trick to breathing is that you need to imagine a hair under your nose and breathe so slowly, it won't move. Hard, but doable. It's very relaxing. Stretching also works well, especially when it happens often.
Love, Stace

Woohoo! My childrens book got published!
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Old 10-21-2007, 04:18 PM
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I also have a tremor: I'm currently on Lamictal, Tri-leptal and Tranxene and have been for several years and just developed the tremor on June 1.
I've had 2 docs tell me I had Parkinson's Disease and 2 tell me that I don't. I have many of the symptoms of PD, but my problem is that both Lamictal and Tri-leptal cause tremors. I have appointments with 4 more neurologists/muscular movemement specialists in the near future and I'll post what I learn. (I've had a seizure disorder for 30 years and this combo of drugs seems to be the only thing that works, but at the same time, it seems to be getting too strong to function. I feel that I'm going to have to guess whether I have Parkinson's and then whether I'm taking an appropriate amount of drugs. Been there before. Will let you know (in about 3 - 4 months).
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Old 10-21-2007, 04:39 PM
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I'm sorry to hear about the tremors H4U. All I can do is recommend looking into seizure control diets or EEG neurofeedback in the hopes that they might help alleviate the need for anti-epileptic drugs (in part or in whole).
New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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Old 10-22-2007, 09:07 PM
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I had read this post; but I just could not
remember what medication it was that
caused me to sustain this problem. When
I spoke with my ex briefly, he told me it
was Pheno (Phenobarbital) and Depakote.
When he (neurologist) had me on a high dosage
and in addition caused me to also have
Vertigo (dizziness, balance problems) as
well and it only happened after taking the
meds. He (neurologist) had to take me off and
put me back on Dilantin and Klonopin at

This was years ago before they realized
I was allergic to Phenobarbital. And it's
been ages since I've been on Depakote.
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Old 12-14-2007, 10:14 AM
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Send a message via Yahoo to gizmo036
yes i get shaky from the dilantin and memory is bad and when it kicks in i talk backwards my girlfriend knows when it starts tokick inmakes you feel foolish and i had cowworkers ask why i was shaking i told them meds i think its when the level drops
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Old 05-10-2012, 01:20 PM
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After reading that this is a fairly common thing among dilantin users it is extremely comforting. I am currently 26 and was diagnosed with epilepsy at age 6... its hard to believe its been 20 years. My initial diagnosis was partial complex epilepsy and was placed on tegratol for a couple of years until it was decided that dilantin would be more effective in controlling my seziures. It has definitely been a trade off, but I didn't let it get in the way and finally achieved my dream of being a police officer a few years ago. Now, in the past few years I've noticed both my hands shake more and more frequently and attributed it to being a caffeine junkie and my work schedule but after it continuing with a complete nights sleep and no caffeine in my system I started to wonder if it could be the meds. I have to write nearly everything down and I've walked off with more than a few drivers licences while on traffic stops but overall I'm coping. My biggest worry is my kids, I hope they don't develop symptoms and at 5 and 1 years of age its a little soon to tell. Best wishes everyone and gods speed.
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Old 05-10-2012, 03:19 PM
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Welcome to CWE Steve.
I applaud you for your outlook. Congratulation on your dream job.
This is an old thread. If you want I can start post this as a new thread, so others can find you and welcome you. Someone that is currently taking the same drug might have some suggestions for your side effects.

Let me know if you want to move this or start a new thread yourself.

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Old 09-09-2012, 01:28 AM
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You know what works really well is how do I say it?Physical therapy. Like back rubs/ It gets your meds moveing throughout your body. Dr. Wilensky prescribed that for me and at first and it unpluged what was in my neck. I walked home and had a few myoclonics.We did this for a few weeks but my coverage worked for only so many days. So I do it for other epileptics I know.
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