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Old 08-08-2018, 06:56 AM
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Unhappy Carbamazepine (Tegretol) withdrawal


Hi lovey people

I have catamenial epilepsy (Catamenial epilepsy is a subset of epilepsy, which includes women whose seizures are exacerbated by their menstrual cycle. Women with catamenial epilepsy are unusually sensitive to endogenous hormonal changes.)

As we were trying to get these seizures under control for the past 8 years nothing as worked so far. In March I put a birth control implant (I tried depo birth control injection twice it did nothing) the implant is not working 100% if you are taking Tegretol so I spoke to my neurologist and said I would like to come off of Tegretol.

I am weaning off Tegretol every 4 weeks.

So I started on 12/06/18 going down from 400mg twice a day to 600mg

On 10/07/18 I went down to 200mg twice a day on the 11th of July I bit my lip during a seizure.

Today 08/08/18 I am going down to 200mg once a day and yesterday I had a seizure and I really badly bit my lip.

I have never done that before. Does anyone know if this can be part of the weaning off process? I am scared now.

Thank you lovelies

At the moment I am on:

Lamotrigine 200mg twice a day
Folic acid 5mg once a day
Citalopram 30mg once a day
Tegretol 200mg once a day until 06/09/18
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Old 08-08-2018, 07:28 AM
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Hi Anela --

Sorry to hear about the seizure. The lip tends to heal relatively fast, so I hope that's the case for you. Ice can help numb the pain.

Biting the lips or tongue is a fairly common part of tonic-clonic seizures, so even if you've never bitten your lip before it's not unusual that you have the last two times. My seizures have had different features -- sometimes I've bitten my tongue, but other times not. I only peed myself the first time I had a seizure but never again.

Hopefully the lip-biting won't happen again. Actually, hopefully you won't have another seizure! Did your neurologist suggest another med to replace the Tegretol?
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Old 08-08-2018, 07:32 AM
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Thank you Nakamova

The reason I am so shocked and upset is that I have partial and compplex partial seizures I don't have grand-mal. I know that during grand-mal seizures a lot of people bite their tongue or lip. So I am so scared and worried that stopping Tegretol means I'll start having grand-mal seizures. No he did not as we are going to see if birth control can control it mixed with Lamotrigine. I have applied a lot of cold and warm but my lips are huge I can barely speak
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Old 08-08-2018, 07:34 AM
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Ah, sorry I thought the lip-biting was a new thing, not the grand mals.

Yes, unfortunately seizures can evolve/progress over time. It sounds as if the lamotrigine and bc alone might not be enough.
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Old 08-08-2018, 09:50 AM
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Originally Posted by Nakamova View Post:
Ah, sorry I thought the lip-biting was a new thing, not the grand mals.

Yes, unfortunately seizures can evolve/progress over time. It sounds as if the lamotrigine and bc alone might not be enough.
I think I am not making any sense lol forgive me let me try it again I bit my lips really bad during a complex partial seizure and I have done that twice now as I have never done that before I am wondering if that is like a side effect of Tegretol wearing off.
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Old 08-08-2018, 12:00 PM
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It doesn't sound like a Tegretol thing to me, just a seizure thing. Just a new seizure thing for you.
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Old 08-08-2018, 12:08 PM
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Originally Posted by Nakamova View Post:
It doesn't sound like a Tegretol thing to me, just a seizure thing. Just a new seizure thing for you.
Thank you. The only reason I feel like it may be a Tegretol thing is because it has happened exactly on the days I am doing my next decrease. Last month on the day I went down to 200mg twice a day I bit my lip and now day before going down to 200mg once a day that happened again.

As you think it may be a new seizure thing is it common at all when having complex partial seizures to bite upper lip?

Last edited by Anela; 08-08-2018 at 12:10 PM.
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Old 08-08-2018, 05:34 PM
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Hi Anela,

When my Dr. took me off tegretrol I was put on vimpat and I had many seizures while changing the meds but in the long run the vimpat stopped most of my complex partial seizures along with decreasing many absence seizures. I used to have catamenial seizures also then my Dr. put me on Diamox and that was a big help. When I first started it I would only take it for 5 day before my monthly cycle to get rid of the extra fluids in my body. Over the yrs. I found that using natural progesterone was one of the best things that helped stop this type of seizure. It's made up of peanut oil and wild yams so if you are allergic to either of these you can't use it. You can buy the natural progesterone cream in natural food stores if you are interested. You just put it on your skin and it will raise the progesterone level in your body to help calm the nerves and in turn reduce seizures. I wish you the best of luck and May God Bless You!

Sue
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Old 08-08-2018, 05:57 PM
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Originally Posted by Porkette View Post:
Hi Anela,

When my Dr. took me off tegretrol I was put on vimpat and I had many seizures while changing the meds but in the long run the vimpat stopped most of my complex partial seizures along with decreasing many absence seizures. I used to have catamenial seizures also then my Dr. put me on Diamox and that was a big help. When I first started it I would only take it for 5 day before my monthly cycle to get rid of the extra fluids in my body. Over the yrs. I found that using natural progesterone was one of the best things that helped stop this type of seizure. It's made up of peanut oil and wild yams so if you are allergic to either of these you can't use it. You can buy the natural progesterone cream in natural food stores if you are interested. You just put it on your skin and it will raise the progesterone level in your body to help calm the nerves and in turn reduce seizures. I wish you the best of luck and May God Bless You!

Sue
Hi Sue,

Thank you darling. I am concentrating on just stopping Tegretol now I can't do too many things at the same time. I have a month left I will be taking 200mg a day of Tegretol and then I will be seeing my neurologist 2 weeks after I have my last dose. At the moment as I have the birth control implant in my arm I am hoping that once the Tegretol is stopped the implant is going to help with catamenial epilepsy. "Tegretol (carbamazepine) is especially known for causing contraceptive failures among those using birth control pills (oral contraceptives). In addition, for those who do become pregnant while taking Tegretol there is an increased risk of birth defects in the fetus."

I feel like my implant cannot decrease my seizures if Tegretol is known to cause failures. The way I look at my implant is like another form of epilepsy treatment and not as a birth control so I would like it to work 99.9% and not 70 or 80% lol. Hence why I asked my neurologist to stop Tegretol. He was not happy about that. And now that I have bitten my lips really badly twice in a month I am a little scared too. But we had no plans on what to do next. I have not been seizure free for more than 28 days in the last 8 years.

Thank you for your suggestions once I am off Tegretol I am going to start to look into other things. I have tried Lamotrigine (which I am on now), Tegretol
(I am coming off) Clobazam, Pregabalin, Zonegran, Keppra, Depo-Provera for catamenial seizures. I also take Lorazepam when I have 3 or more seizures in a day which is pretty much always.
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Old 08-09-2018, 07:36 AM
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As I understand it, Tegretol doesn't decrease the implant's anti-seizure properties, it only messes with its efficacy as a birth control device. It's the same thing with Lamictal and the Pill.
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Old 08-09-2018, 08:05 AM
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Originally Posted by Nakamova View Post:
As I understand it, Tegretol doesn't decrease the implant's anti-seizure properties, it only messes with its efficacy as a birth control device. It's the same thing with Lamictal and the Pill.
All of my seizures were when I am ovulating and time of the month once I put the implant and I would check my calendar where I would of been ovulating or having my period I was still having seizures even with the implant in.

Every month I have at least 15 or so seizures my last seizure was on 14th of July and then on 7th of August. Normally in 24 days I would of had over 10 seizures. I really don't know what to do anymore
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Old 08-15-2018, 03:26 PM
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tegertol is a solid med.

The sides are sh!tty, ive been on 1200mg for 7yrs. even 1400mg,

being male i was worried about getting my wife pregnant, but i was able.

I was going to address it with my Neruo before she/we found out.

Wish you the best, have you ever looked into a VNS...RNS..??

I have vns and feel it decreased the frequency quite a bit. it kills your voice, which i am in sales and it makes things very tough, but still able to work.

Good luck to you with this and Epilepsy as a whole.
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Old 08-17-2018, 12:47 PM
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Originally Posted by gymrat827 View Post:
tegertol is a solid med.

The sides are sh!tty, ive been on 1200mg for 7yrs. even 1400mg,

being male i was worried about getting my wife pregnant, but i was able.

I was going to address it with my Neruo before she/we found out.

Wish you the best, have you ever looked into a VNS...RNS..??

I have vns and feel it decreased the frequency quite a bit. it kills your voice, which i am in sales and it makes things very tough, but still able to work.

Good luck to you with this and Epilepsy as a whole.
My mum is on Tegretol and it works for her just like it seems to work for you and a lot of people out there. She is been on it over 15 years or so. Thank you for the kind wishes! Neurologist once mentioned it but we didn't look into VNS in detail maybe that's going to be something I do next. Once again thank you very much for your kinds words
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Old 08-17-2018, 02:13 PM
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yea, my mom has taken tegertol for 35 + yrs as well
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