Discontinuing anti-convulsant drug??? What to look for?

[Carolina]

Hi angels,

Well, since the anti-convulsant I take may be causing my weirdly low numbers for all of my immune factors (IgG), I'm discontinuing it.

I didn't call my Primary Care, because although she prescribes it, she only does so because I was on it when I started with her.

I take oxcarbezapine (brand name Trileptal) at 300mg a day, which isn't all that much, I guess.

Anyway, I wound up consulting with my son, and he suggested cutting the dosage in half for a month, and then if I don't notice any problems, discontinuing it.

He kept asking me WHY the psychiatrist prescribed it in the first place, and what difference it was making.

I have never noticed it doing anything FOR me.  It is supposed to be treating borderline borderline bipolar, but I've never really had a problem with that.  And the one brief incident of hypomania was situational and occurred 3 YEARS after I started on the drug, while I was taking it.

So I'm on my way off.  Will be interesting.

I've always assume it was helping with the pain of neuropathy, but who knows?

I guess I'll find out about that.

What have other people experienced in coming off anti seizure drugs?

Inquiring minds want to know.

Hugs

Elaine

[Joe S.]

Gradual reduction is often recommended.

[buddybelle]

If you have any kind of neuralgia pain, Neurontin might be a good choice. It works for me.
Buddybelle

[Jozee]

Neurontin works for me too with Savella added too. Although I do notice weight gain with Neurontin but it could also be that I am unable to do anything anymore too. Who knows at this point!

[irish]

Elaine, I guess I would advise calling the doctor and asking how to go about this. It is your right to quit the drug, but I would think that it might pay to to find out if there is a tried and true method that they recommend.

If it was me that was doing the taper I would do a 25% reduction and do it for at least4 weeks and then drop another 25%. It is much easier on a person and safer to cut down by the 25% on all psychotropic drugs because it is less traumatic. Also, by the time you drop to the last 25% of the med it is often recommended to include an every other day dosage, etc.

Many times the last half of the med is harder to taper off than the first half. If this is the case then stay on it for 2 months. Like I said, ask first and then see what you can come up with. You want to make it a safe reduction also. By the way, I would also ask the nurse or doc if there are any unusual symptoms that you should watch for during this taper. I am referring to tics, muscle spasms, or any other stuff. Good luck. Irish

[Carolina]

Thanks for the support, dearest Angels!

I didn't make it clear that my son is a practicing psychiatrist, age 41.  He determined a discontinuance regimen for me based on my dosage, which is low, and the fact that he can monitor me easily (in fact he has trouble avoiding tales of my health, poor baby). He lives 10 minutes away and we care for our grandchildren regularly (and our grand puppy as well).

My big concern is what is has been like stopping any anticonvulsant, for others in our group.    I've read the Googled stuff, but appreciate actual accounts.

Since all anticonvulsants can depress IgG levels, cause UTI's, and ataxia, and vertigo, and fatigue (the last three are common, not the first two) I'm not trying to change at this point to another one.  I have ALL of the above, and only started any of them AFTER beginning anticonvulsant therapy.

Pain is my big concern, tho' I didn't have neuropathy (that I knew of ) when I started Trileptal, nor did I have chronic UTI's, for that matter, ataxia, vertigo or fatigue.

It looks like the Trileptal may have caused the UTI's which led to the constant doses of the antibiotic which may have caused my neuropathy.

Lots of 'mays' there.

But now that things are slowing down vis a vis new problems, I'm exploring the meds side of the equation.

I value your input and read every word with great attention and gratitude.

Hugs

Elaine

[Patze]

Hi Carolina,

Good luck Carolina, and I'll keep the fingers crossed that everything turns out well.



Patze

[Still in the hunt]

slow but steady winss the race elaine

[irish]

Elaine, I am sorry, I forgot that your son is a psychiatrist. I bet he can be the butt of a few jokes when the family gets together.lol

You are lucky to have him so close and lucky to get to babysit. Those grandkids are the light of our lives, aren't they. Good luck on the taper dose. You have a direct line to your private doc if you need input. Boy, are you lucky. Irish

[Carolina]

Lol, Irish

They say the doctor's family is like the cobbler's children, no medical care/no shoes.

A doctor who cares for himself (or his family) has a fool for a patient, is another one.

But he will be on hand to give advice and take care.

He's also a sweetie.

IMHO

But then, he is my 'baby'.

Sigh

Hugs

Elaine

[Patze]

Aw Elaine, he sounds like a wonderful son!


Patze

[Carolina]

oh Patze!

well, yes and no.

I mean he makes me crazy, like any kids do.



Even grandkids start making you crazy when they get old enough!

It's never dull, tho'.

Mostly I just try to 'let 'em whirl' as the guy living next to the whirling dervishes said.

Also, I found out a long time ago that we're all about as happy as we want to be (per Honest Abe) and that everyone has his or her share of joys and sorrows no matter what life's circumstances seem to be.

I have found it doesn't make any difference what people's education or income or jobs or whatever may be........and I find that truly wonderful and amazing.

But as my first therapist said.  "Take the credit for things you have no control over when they go well, cause you'll surely get the blame if they go wrong!"





Hugs

Elaine

[Joe S.]

Elaine, How is it going getting of the drug? Did I miss your response?

[Carolina]

Well, Joe,

I cut the dosage in half early in the week.

Now you KNOW that sometimes it is very hard to tell 'how are you feeling' as a result of a change in anything.

I think maybe I have a bit more of a headache?

And maybe feel a bit more achy?

But who knows.

Nothing dramatic, nor did starting the anticonvulsant reduce any headache or achyness.  Soooooo, at this point I would say I don't notice much.

HOWEVER, I think it takes about a week for the drug to clear the system, and so I'm still running on the full dosage in some ways.

Next week will tell the tale.

Just so I don't have a seizure.  Tho' since I don't know what that's like, I have no idea what might happen.

Thanks for asking.

I also changed one of my anti hypertensives, stopping Lisinopril and starting Losartain.  The cough is still with me, so the improvement, if there is one, isn't dramatic yet.

One web site says:
On average, it can take up to 14 days for the cough to completely go away. In some studies, however, it has been reported to take months.

Having all the fun there is!

Hugs

Elaine

[Joe S.]

Most drugs take about three weeks.