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Joanne · #1 11-11-2008, 08:39 PM

Hi everyone

I'm new here but not to Epilepsy.
I've been seizure free since 1985 while taking 500mg of Dilantin and 80mg of Phenobarbital. My doctore tried to lower my dosage to 400mg in 1982 and 1984 only to have a seizure soon afterwards.

I don't want to change my meds but last week my dilantin level was 44.
I've been high before but never over 33.
Last week while I was menstruating I noticed my limbs would move or jerk very slightly. Now that it's over it has subsided alot.

I'm afraid to lower the dosage, never mind changing it!
I agreed to lower it by 100mg every other day until my next blood test.

I also lost 40 pounds since March which may have effected the levels too.
Also note that all my seizures were when I was menstruating.

stilldancing_98 · #2 11-11-2008, 11:49 PM

Hi Joanne, I'm glad you are here. I to have seizures durring my period. Jerking is one of them. Mine are called myoclonic seizures. Hormones and all can change that.I have had epilepsy for 33years now and my son has it to. If you don't want to lower it yet. Call your doc and talk to him and see what he or she says. I say call your doc before you do anything. Teresa

**Bernard** · #3 11-12-2008, 06:01 AM

Hi Joanne, welcome to the forum.

Well, you can't maintain a toxic level of Dilantin, that's for sure.

My wife has had severe seizure problems when she lost too much weight (she is also on Dilantin and currently experiencing seizure activity around her menstruation cycle).

Have you talked to your doctors about using natural progesterone cream to control the catamenial seizures?

**skillefer** · #4 11-12-2008, 11:52 AM

hi Joanne! Welcome to CWE. I have to agree with Bernard. Talk to your doc. It could be that your seizures are being triggered by shifting hormone levels. Also, your doc may bring your med levels down a little. My doc always told me that the heavier I was, the more meds I'd have to take. Anyway, take Bernards advice and go talk to your doc.

**BuckeyeFan** · #5 11-12-2008, 01:44 PM

I have been on dilantin for 27 years and don't believe I have ever tested any higher than mid-20s. Usually anything over 20 and I start to feel the effects.

It sounds like the doc is correct in trying to lower your dosage. You need to get that level down. Dilantin is nasty enough at normal levels. I myself am pretty sensitive and need to alternate between 500 + 600 mg every other day to maintain my level.

A few years back I lost 50 pounds over a year. This did not impact my dilantin level at all. BUT EVERYONE CAN BE DIFFERENT.

Joanne · #6 11-12-2008, 10:12 PM

Thanks everyone for your replies.

My dilantin level has always been on the high side, usually around 25-30.
This is the first time I felt the effects. I'm alternating between 400mg and 500mg every other day and going for another blood test Wednesday.

stilldancing_98 · #7 11-12-2008, 10:22 PM

Rooten for ya Jo! lol

alivenwell · #8 11-13-2008, 12:44 AM

Measurements are always a good idea. There are so many variables with this. A seizure can also be triggered by a low sugar level. You might want to invest in one of those glucose monitors when you go to the drug store for your next script(s). That time of the month is one of my factors as well.

I was on a combo of dilantin and phenobarbital which worked quite well for me for many years. I recall only taking 300 mg of dilantin, though. I honestly don't recall the phenobarbital level or amount that I took in one day. I was taken off dilantin immediately after I became pregnant due to the cleft palate birth defects associated with it.

Dilantin can have a major impact on dental health. It's probably best to give it a trial period since you've already had some seizures. Maybe you've built up a tolerance to the medication?

Purely out of curiosity, have you recently switched from brand to generic, generic to another generic, or generic to brand? That can have an impact on seizure control.

ashmstng · #9 11-13-2008, 02:15 AM

Hello Joanne~
Welcome to the CWE Board. I hope you find what you are looking for. Nice to meet you.

**BuckeyeFan** · #10 11-13-2008, 08:53 AM

Originally Posted by alivenwell

:

Purely out of curiosity, have you recently switched from brand to generic, generic to another generic, or generic to brand? That can have an impact on seizure control.

Dilantin is one of the worst drugs for inconsistent generics. I actually switched to the brand name Phenytek about 5 years ago because it is time released and my doc said it helps flatten the peaks and valleys of your blood level.

**drarvindr** · #11 11-13-2008, 05:19 PM

Quote :

I also lost 40 pounds since March which may have effected the levels too.

I think that's probably the cause of your raised levels. The drug dosages are titrated per kilogram body weight and response provided by your body. The recent weight loss would have shifted this balance. I think you need a dosage reduction especially considering the nastier side effects of dilantin.How long have you been seizure free on this current dosage? If you've been seizure free for a while then dose reduction is a risk benefit equation. Whether the side effects worth the seizure free period or not is a question you will have to raise with your neurologist. Hope you get better soon.

Sandee · #12 11-13-2008, 05:33 PM

Hi Joanne,

Welcome! I was on Dilantin and it was the generic brand. Suffered a seizure while taking the recommended dose. Found out the generic was not as good as the name brand. My doctor would only allow the name brand after that. This year I switched from Dilantin to a variety of different meds to finally end up with Keppra and Phenobarbital. Every one reacts differently. It is your health and you have every right to question, question, question and question the doctor till you are satisfied with the answers.

Not sure if you are from the commonwealth of Pennsylvania but if you have a seizure while on medication you lose your license for six months. I speak from experience!

Sure will keep you in my prayers. Keep us posted as to how you are doing.

Joanne · #13 11-13-2008, 06:25 PM

Thanks everyone! You've all been so nice and helpful.

I've been on the generic for as long as I can remember. I am going to look into the brand name.

**Stacy** · #14 11-13-2008, 06:29 PM

Hi Joanne,

I too have seizures during the first and second day of my menstural cycle. I am headed into "perimenopause" which I found out via the book, "The Venus Week"... Great read for all you guys (gals) with problem periods.

From the research I've done, my hormone levels plummet on the first day of my period, and then stay low until it's over. My periods are nasty too, but have gotten better since I started on Progesterone Cream for 10 days during my period. I was taking Pregnenolone, but I read somewhere that if you have seizure disorders, don't take.

Something I've noticed is that everytime I get to the hospital, they say, "Oh, her Dilantin levels have gone down, just up her dosage." This is a bunch of C.R.A.P. if you ask me, and they never do right after I've had a seizure. First of all, the hormone levels affect the Dilantin levels, not the other way around. Second, when you start losing hormones, and you have no replacements, and no meds, seizures start happening. DUhh. So finally, I think I've gotten it straight ... pretty much. I'll keep you posted... Please keep me posted also.

Joanne · #15 11-13-2008, 06:32 PM

Originally Posted by drarvindr

:

I think that's probably the cause of your raised levels. The drug dosages are titrated per kilogram body weight and response provided by your body. The recent weight loss would have shifted this balance. I think you need a dosage reduction especially considering the nastier side effects of dilantin.How long have you been seizure free on this current dosage? If you've been seizure free for a while then dose reduction is a risk benefit equation. Whether the side effects worth the seizure free period or not is a question you will have to raise with your neurologist. Hope you get better soon.

That is my major concern. I've been seizure free for 23 years and I am afraid of what could happen. Aside from hair growth I haven't felt other side effects (until now)that would what me to change the medecine or reduce the dose.

Joanne · #16 11-13-2008, 07:02 PM

Originally Posted by Stacy

:

Hi Joanne,

I too have seizures during the first and second day of my menstural cycle. I am headed into "perimenopause" which I found out via the book, "The Venus Week"... Great read for all you guys (gals) with problem periods.

From the research I've done, my hormone levels plummet on the first day of my period, and then stay low until it's over. My periods are nasty too, but have gotten better since I started on Progesterone Cream for 10 days during my period. I was taking Pregnenolone, but I read somewhere that if you have seizure disorders, don't take.

Something I've noticed is that everytime I get to the hospital, they say, "Oh, her Dilantin levels have gone down, just up her dosage." This is a bunch of C.R.A.P. if you ask me, and they never do right after I've had a seizure. First of all, the hormone levels affect the Dilantin levels, not the other way around. Second, when you start losing hormones, and you have no replacements, and no meds, seizures start happening. DUhh. So finally, I think I've gotten it straight ... pretty much. I'll keep you posted... Please keep me posted also.

Thanks Stace Best of luck to you too!
I'm going to ask the doctor about Progesterone cream.

Joanne · #17 11-14-2008, 11:41 AM

I have to thank you all again.

I called the pharmacist to find out about my generic pills.
They changed to a new company in July. They do have the other generic type I was on for years where I had with no problems. I just have to order my prescription a few days earlier.

The new ones were all white while the other were white with the red stripe in the middle.

I Can't thank you all enough for our help and support.

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Dilantin level - WOW!