Weaning off meds- pls help

[Drsmith]

Hi everyone

I'm new here. I started having seizures in my sleep possibly twice a year from age 8 till age 21. When my Dr increased my dose to 200mg carbamazepine AM and 400mg PM the seizures seemed to stop. After a few years we gradually reduced from 600mg to 400mg then 200mg. Fast forward, it's been 11 years seizure free on 200mg carbamazepine. (I've been a practicing dentist for 8years) I've recently married and we'll looking at having children in the next year or so.

My Dr wants to wean me off it by taking 200mg every other night- so skipping a night.

This is daunting to me because what if it's what has been keeping my seizure free. My husband has never witnessed a seizure.

How risky is this? Anyone with similar success stories? Relapsing would be devastating to me after 11 years seizure free.

Thank you

 

[Porkette]

Hi Drsmith,

Welcome to the forum! I've had to wean off many different meds, I've had seizures for 50 yrs. If I were in your
place I would tell my Dr. to leave everything alone. You should ask your Dr. why he/she wants you off the drug, I
know from personal experience some Drs. just want to try you on a different drug to make more money. There
is a chance that you could have a seizure. My best advice to you is to tell your Dr. to do a DNA test on you and
by doing that they can tell what seizure med the best for you with the least side effect would be. I had this done
and I found out I was drug resistant so my Dr. told me to start using the cbd oil (med. marijuana) I buy it online
in a mint mouth spray and it has done me wonders. I wish you the best of luck and May God Bless You!

Sue

 

[Drsmith]

Hi Sue. She wants me to go off medication completely so I can bear children without complications or neural tube defects. Carbamazepine works perfectly for me since childhood. She is not out to make money off anything, she wants me off it because it's been 11 years since my last seizure

 

[Porkette]

I have a cousin who had tonic clonic seizures and she was taking Dilantin and phenobarbital many yrs. ago and she had
a son who is now in his later 60's. I do know the med you are taking can cause problems if you want to bare a child.
With hormones changing a lot while pregnant you should make an appt. to see an Epileptologist these Drs. know
what to do better than any neuro I've ever seen. Wishing you only the Best and May God Bless You!

Sue

 

[Sabbo]

In 1999, had a healthy son while on Dilantin--340mg/day. At that time, I was only having simple partial seizures (to my knowledge). My neurologist also raised my daily of folic acid from 1mg to 4mg during my pregnancy. In 2006, when I gave birth to my younger son, I was on 400mg/day of Topiramate with the 340mg of Dilantin because they realized I was having complex partials as well.

 

[Nakamova]

Hey Drsmith -- one option is having an EEG done as you are tapering down, to see if abnormal brainwaves are starting to occur. That gives you at least some information to work with as consider going off meds altogether. I did that while tapering off of phenytoin. I decided to continue tapering even though such brainwaves were showing up, and unfortunately ended up having a seizure when I was fully off of the med. (I've since been seizure-free on Lamictal for many years now).

There are also meds out there that are less risky for pregnancy and childbirth, perhaps your neuro would consider transitioning you to one of them?

 

[Music36]

In recent years, they have done research on seizure meds and pregnancy. As Nakamova said there are less risky meds and as Porkette mentioned an epileptologist would know best about it. I was on carbamazepine when I was pregnant in 1991. Thankfully, it didn’t harm my daughter. But, I know it has risks to the fetus.

 

[XxBlaqkxX]

Welcome Drsmith to the forums here!

I understand a lot of what you're describing.

To start, if you feel uncomfortable weaning off of your medications - tell your doctor. Many of them won't press it if you're not okay with that. I had neurologists tell me before after being seizure free for two years if I'd like to try to come off of it. I said no at the first offer and then went on until I was 10 years seizure free. I didn't seem to have issues if I missed a dose or anything and my therapeutic dosage was low as it is and I was an adult at this time (diagnosed about 9 years old).

I asked a neurologist if I could. She did an EEG and for once in forever, it was normal. I came off of the medications for 15 months. My body felt balanced, I wasn't having issues around my menstrual cycle like something I did was helping a lot. I got COVID and my seizures came back with a vengeance. Illness gets me. COVID put me down for a good year or so and I struggled. Been back on the medication, no major issues, I hate to take it the rest of my life, but I try to tell myself that at least the dosage is super low (500mg/day of Keppra extended release). I'm not going to fuss too much, I suppose - it could be a lot worse. I just feel it isn't doing my teeth or body any favors at times. I am sure things will continue to get better, but it broke my heart. It was nice having no follow-ups with a neurologist, no need to fuss with pharmacies for 15 months, though. Perhaps God knew I needed the break.

When I came off of my medication with neurologist approval, I had crazy side effects coming off of it. My whole body was hurting so bad, the pain was crippling for a few days. I weaned off of the medication more slowly than the neurologist said and I'm glad I did. At least Keppra could be cut down gradually unlike chalky pills like Lamictal that are near impossible to cut into 1/3's, 1/4's, etc.

I find that when I was off of my seizure medications, I had also been following a low carb, grain free diet. Not necessarily keto, but I cut out wheat because I know it bothers me greatly and I have minor issues with corn and I'm allergic to rice so I can't do that anyway. I have a lot easier time when I stay away from the wheat. It's really hard, but I feel a million times better - it does bother my body. I find that if I come in contact with rice, I feel like I will have a seizure, it's miserable. Big trigger for me.

Sometimes it's worth a try, but it depends how you feel, too. You have a say. Weigh your risk, keep talking with your doctor, etc. etc. do the best you can do for you.

 

[Drsmith]

Hey Drsmith -- one option is having an EEG done as you are tapering down, to see if abnormal brainwaves are starting to occur. That gives you at least some information to work with as consider going off meds altogether. I did that while tapering off of phenytoin. I decided to continue tapering even though such brainwaves were showing up, and unfortunately ended up having a seizure when I was fully off of the med. (I've since been seizure-free on Lamictal for many years now).

There are also meds out there that are less risky for pregnancy and childbirth, perhaps your neuro would consider transitioning you to one of them?

Hi. I unfortunately suffered a seizure over the weekend after tapering down as per my drs suggestion after 10 years seizure free

I went to the ER, they gave me epilim IV, and put me on Lamictin and Rivotril for the next two weeks. The ER dr says Lamictin is safe in pregnancy? But I feel very drowsy. Is this just the initial side effects and does it improve?

Thank you for your kind assistance

 

[Nakamova]

Re: Lamictin and Pregnancy:

Lamictin (also known as Lamictal or Lamotrigine) is considered one of the safest AEDs for pregancy, but there are a few things for both your neurologist and obstetrician to be aware of:

1. As estrogen levels go up during pregnancy that can speed the clearance of Lamictin from your body, so it’s very important to have your blood levels checked before and throughout the pregnancy to make sure they are at a safe level. Assuming your seizures are controlled by Lamictin, your neuro should first do a plasma blood test pre-pregnancy to get a reference level for your therapeutic dose.

2. After you get pregnant, your levels should be tested every four weeks to make sure they aren't dropping below a therapeutic level. If they are, then the dose should be increased by approx, 25%

3. After delivery, estrogen levels will drop (allowing Lamictin levels to rise), so your levels should be tested within the first week. If your Lamictin levels are too low, then they should be gradually reduced until you reach your pre-pregnancy therapeutic level.

It's very important that your neuro and OB-GYN are talking to one another. Pregnancy while on Lamictin is safe, it’s just a matter of monitoring your levels and how you're feeling.

 

[Nakamova]

Re: Lamictin, Rivotril and side effects:

First of all, Rivotril (also known as Clonazepam) is a benzodiazepine, which means it works as a sedative. That will make you sleepy! I think it's likely your neuro will take you off of it once you are at a therapeutic dose of Lamictin.

Lamictin is usually ramped up very slowly. (This is to minimize the chance of an allergic reaction that shows up as a skin rash). Side effects can change over the course of the ramp-up period . As I tapered onto Lamictal, my sleep quality wasn't great -- I would have intense nightmares, and sleep very lightly -- so that made me pretty tired during the day. I also got the occasional mild headache (that responded to Tylenol). But once I was at a stable dose, my sleep normalized and the headaches. It should be noted that everyone has different side effects -- YMMV.

Lamictal can have some long-term side effects -- it can sometimes affect bone density (though much less than other AEDs). I will be getting a scan done soon.

 

[Drsmith]

Wow!! Thank you everyone for this amazing input. I am seeing my neurologist on 6 April. This community really helps me to feel accepted, less ashamed and more "normal". It's always been a secret that not even close friends know about. I now have to be off work for an entire month while I stabilize on lamictin and inform my employers- which is extremely daunting. So thank you everyone for helping me to understand these side effects and emotions. It's overwhelming because I thought this chapter of my life was closed after 12 years seizure free.