Fear of stopping dilantin

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

aman

New
Messages
13
Reaction score
0
Points
0
how do i get over the fear of stopping my Dilantin?
My levels have never been higher than 4.6 and i have been taking it for 16 years. I took 300mg for 14 years then DR upped me to 400mg for compulsive thinking about the seizures.
Every dr has told me to stop but i just cant the fear is so bad.
Im 32 and now my teeth are starting to fall out
Any advice on how to do this.

History

2 seizures we think in early morning during sleep.when i was 16
currently 32 none since then
 
aman

There is always a fear involved in stopping or changing a medication, it is not that straight forward. There is the fear that if you stop taking something that works, what will happen? You and I have no idea about the answer to that question so we have to have faith in what our neurologist think. The fear is normal and I cannot blame you for that but you know the side effects that have affected you so you have to sit down and say I need to do this. Do not forget that after being on a medication for that long it presents its own problems so it might be the best for you but only you and your neurologist will know this.
 
Hi aman,

Phenytoin I was on years back and a psychiatric doctor pulled me off them...not because there was anything up with my teeth and gums but because of what they can do to your mouth but I was replaced on another drug.

The fear your having is through anxiety and proberly wandering if seizures will occur more but if your neuro works with you slowly to come off the drug and replace you, you should be ok but just watch how your body reacts to any new med you may go on and if you don't feel right then the neuro should be told straight away.

I've known other people be on them and have teeth issues but they've kept the seizures under control...I know your 32 as you've stated but it's down to how obsessed you are about your teeth and gums, where i'm concerned I go regular for checkups and cleans.
 
Hi aman,

Phenytoin I was on years back and a psychiatric doctor pulled me off them...not because there was anything up with my teeth and gums but because of what they can do to your mouth but I was replaced on another drug.

The fear your having is through anxiety and proberly wandering if seizures will occur more but if your neuro works with you slowly to come off the drug and replace you, you should be ok but just watch how your body reacts to any new med you may go on and if you don't feel right then the neuro should be told straight away.

I've known other people be on them and have teeth issues but they've kept the seizures under control...I know your 32 as you've stated but it's down to how obsessed you are about your teeth and gums, where i'm concerned I go regular for checkups and cleans.

Yes I was 16 when i had the 2 seizures and 32 now and have had none since. with low dilantin levels.
They dont want me to go on any new meds just to stop these. And really have given me no plan on how.
I have only seen a neurologist three times in my life. I just see a normal family dr.
Epilepsy foundation was no help either
 
Yes I was 16 when i had the 2 seizures and 32 now and have had none since. with low dilantin levels.
They dont want me to go on any new meds just to stop these. And really have given me no plan on how.
I have only seen a neurologist three times in my life. I just see a normal family dr.
Epilepsy foundation was no help either
It sounds to me like the Dilantin (phenytoin) as actually been helping you since you was 16 and you could make changes and disturb things but meds are down to each individual and that's why your most likely see just a GP now because of only having the two seizures.
 
It sounds to me like the Dilantin (phenytoin) as actually been helping you since you was 16 and you could make changes and disturb things but meds are down to each individual and that's why your most likely see just a GP now because of only having the two seizures.

yes thats what i think too. bit the drs say thats bot true because levels are too low to protect me.
Now i am suppose to be taking 300mg but i take 400mg still anyway. I will my body know the difference if i back in down to 300mg after a couple years
 
After just 2 years seizure free, many neurologists will suggest trialing a period of time off medication (depending on your EEGs, MRIs, etc.) - you have gone many, many more years than that without a seizure. The longer you go without a seizure, the more likely that you will continue to be seizure-free off of medication! And since you are feeling the effects of all those years on dilantin, so it sounds like it would really a good idea to give it a try.

Of course, you are free to stay on the dilantin if it makes you feel better! This is a very personal choice. However, at this point, it sounds like anxiety about seizures is a much bigger issue than the seizures have ever been. Do you have anxiety about other issues as well? If so, you may want to explore those issues with a therapist. If your overall anxiety level is reduced, you may find that your anxiety about this issue starts to disappear.

Best of luck to you!
 
After just 2 years seizure free, many neurologists will suggest trialing a period of time off medication (depending on your EEGs, MRIs, etc.) - you have gone many, many more years than that without a seizure. The longer you go without a seizure, the more likely that you will continue to be seizure-free off of medication! And since you are feeling the effects of all those years on dilantin, so it sounds like it would really a good idea to give it a try.

Of course, you are free to stay on the dilantin if it makes you feel better! This is a very personal choice. However, at this point, it sounds like anxiety about seizures is a much bigger issue than the seizures have ever been. Do you have anxiety about other issues as well? If so, you may want to explore those issues with a therapist. If your overall anxiety level is reduced, you may find that your anxiety about this issue starts to disappear.

Best of luck to you!

Thanks for all your support guys.I feel a lot better
I just have anxiety over thinking about seizures.

I'm gonna cut down to 300mg for a few then down to 200mg and so on.

I have stopped in many of times in the past cold turkey and felt great

:hugs:

Thank you guys
 
Thanks for all your support guys.I feel a lot better
I just have anxiety over thinking about seizures.

I'm gonna cut down to 300mg for a few then down to 200mg and so on.

I have stopped in many of times in the past cold turkey and felt great

Aman your welcome but if you are going to pull off them do it slowly at 5omg weekly as 100mg maybe abit to much in one go going without seizures...better to be safe than sorry.

Never do cold turkey where seizure meds are concerned :hugs: to you also and please keep we updated weekly.
 
I've been on Dilantin for decades. It controls my grand mal seizures and I'm coping with the side-effects (no problems with my teeth or gums). My blood levels are within the therapeutic range and I have had seizures when I've dropped below that range.

Based purely on my history, the fact that you can go stop taking Dilantin cold-turkey with no problems indicates to me that the Dilantin isn't helping to control your seizures. If it was, then you would have seized when you went cold-turkey. Never do that - my doctor said it's like jolting your brain, depriving it of the chemical it needs to stay in balance.

I do understand your fear however I seriously question whether or not the Dilantin is actually helping you - seems like you just think it is helping you and, understandably, don't want to have another seizure.

This is a very difficult road we all have to walk but you do have to find a doctor you can trust will walk it with you. Someone you can discuss your fears with and have a plan as to exactly what you are doing/attempting to do.

{{{Hugs}}}
 
I am starting to think i was never epileptic and it was just the sleeping pill i was taking that gave me these 2 episodes within 3 days when i was 16.
My level has never been therapeutic
 
I am starting to think i was never epileptic and it was just the sleeping pill i was taking that gave me these 2 episodes within 3 days when i was 16.
My level has never been therapeutic
aman you have many concerns going on which is quite understandable from having the two seizures when you was younger...if I was in your place i'd speak my issues to my GP and see what he/she says from there or ask to see another neuro because you need to be working with someone.

My GP will not get involved with my epilepsy or any other issues except for general GP assessments and if he did have to get involved which he's stated to me, he likes confirmation by letter from the specialist.
 
aman you have many concerns going on which is quite understandable from having the two seizures when you was younger...if I was in your place i'd speak my issues to my GP and see what he/she says from there or ask to see another neuro because you need to be working with someone.

My GP will not get involved with my epilepsy or any other issues except for general GP assessments and if he did have to get involved which he's stated to me, he likes confirmation by letter from the specialist.


I have no clue why was handled so bad all these years. I never had a neurologist and went 13 years without seeing one from the seizures then i requested to see one, and still really got no answers
 
I have no clue why was handled so bad all these years. I never had a neurologist and went 13 years without seeing one from the seizures then i requested to see one, and still really got no answers
None of this is right, you should be under proper care of a neuro and i'm stating this with how I was treated, which in a way is similar to your position.

Years back wrongly diagnosed with the temporal lobe, then when I was 18 came from top to bottom of the stairs through odd limb jerks, rushed into hospital and kept there for a week where a proper seizure broke out and told I had seizures plus no meds or referal....then I had another at home and fractured my pelvis, while in hospital another accured and I came out the bed I was in a right mess plus the rheumo going mad....he phoned for a neuro to see me on the ward, he took me under his wing and meds was started and been with specialists since besides loads of tests.
 
Last edited:
None of this is right, you should be under proper care of a neuro and i'm stating this with how I was treated, which in a way is similar to your position.

Years back wrongly diagnosed with the temporal lobe, then when I was 18 came from top to bottom of the stairs through odd limb jerks, rushed into hospital and kept there for a week where a proper seizure broke out and told I had seizures plus no meds or referal....then I had another at home and fractured my pelvis, while in hospital another accured and I came out the bed I was in a right mess plus the rheumo going mad....he phoned for a neuro to see me on the ward, he took me under his wing and meds was started and been with specialists since besides loads of tests.


and sadly it just seems that nobody can help.
 
aman i'll say g'night as i'm up hospice tomorrow having bloods took for my chemo med plus i've sent you a friends request.

Speak tomorrow :hugs:
 
and sadly it just seems that nobody can help.
Push furthur with it as I would because the wondering besides meds is stressing you and at the moment seizure wise your carm...you can do without the extra stress.
 
I just want to add a suggestion to the great responses above. If you live near a teaching university, call and see if they have n 'Epilepsy Center'. If so, please consider making an appointment with a neurologist that specializes in epilepsy. My best to you.. MaryK
 
Back
Top Bottom