Tegretol, alcohol and seizures

Brain and nerves
1

Hi everyone

I've been taking Tegretol for over 2 years - varying doses according to the pain and periods of remission. I've always been careful to change my doses slowly and monitor things intelligently, as advised.

Last Thursday, I took a 100mg tablet at 6pm and drank 2 glasses of wine at 7pm before eating dinner - it was a birthday celebration.

Half way through the meal I passed out, coming round to find myself covered in sick and surrounded by horrified observers.

I had fitted - clinched fist and bitten tongue - and vomited.

I looked around and promptly had a repeat experience, finally waking to find I had urinated over the floor and been violently sick again!

My wife called an ambulance and I was taken to hospital.

After blood tests and the usual monitoring of blood pressure etc., I had a CT scan of my brain and it revealed mild damage to some blood vessels - either something that was previously there or due to  the fitting I'd experienced. I was discharged next day with an MRI scan being arranged to verify the extent, if any, of the brain 'damage'. The consultant was at odds with the initial diagnosis of the CT scan, believing that it might have been over- interpreted, hence the MRI to clarify things.

On the leaflet that accompanies Tegretol, it remarks that alcohol may enhance the effects of alcohol but nothing more urgent is recorded. My pharmacist, who I have great respect for, feels that this is a gross understatement and that alcohol should never be taken when Carbamazapine is being used - never!

I visited my GP yesterday, to arrange some follow-up tests, and he felt that this wasn't a serious issue, ie. taking alcohol was not the cause!

i have made my own decision to completely remove alcohol from my diet. After all, I can do without it, but not without Tegretol!

I wanted to share my experience and ask if anyone else has had anything similar. Perhaps we all need to monitor Tegretol carefully - a drug used to help with epilepsy is not to be treated lightly, it would seem.

2

Hi Colin

 I’m so sorry to hear of your events.  It must have been very traumatic for you and your wife. I hope you feeling better now?

I am also on Tegretol, have been for 10mths now (200 – 400mg) I limit myself like you do and keep the dosage low.  I have drunk on it several times. Sometimes you just need to let your hair down and enjoy yourself when the occasion presents itself, after all we coping with a lot, so don’t beat yourself up about it.

I’m a bit confused by what you did. Were you taking the tablets every day and if so how much were you taking? Or did you just decide to take one before going out? If they were already in your blood stream and you just took an additional one for whatever reason, I can’t see why they had that effect on you. Does anyone in your family have Epilepsy? I must admit I don’t feel very good the day/s after I drink. Bad headaches (presumably hang over, but slightly worse it lasts a few days).  I was told that alcohol reduces/eliminates the effect of the tablet.  

If I know I’m going to be drinking. I.e. going to a party, I take 2 instead of one before I go to bed so it can hopefully work its magic whist I’m asleep.  Your story has really alarmed me, and your right, we don’t know how our bodies really tolerate the drug or the effects of alcohol.  It will be really interesting to hear what your MRI presents.

Actually thinking back, (apologies my memory isn’t too good) I had a similar experience to this, but not quite as drastic on Boxing Day 2014. I was diagnosed in Nov 2014 and before I knew it the Xmas season was upon us. So I would have been on Tegretol for about a month and a half by then.  I was still feeling very fragile (face pains) but I tried to integrate and have some fun.  I was in pain so I took my usual x1 Tegretol and I had 2 co codemol’s 1000mg an hour before I drunk. I only sipped a few sips of champagne and ate my lunch. Within 30 minutes I was violently ill.  I was told it was the co codemol, you never mix pain killers with alcohol. Lesson learnt! As a result I spent the rest of the day in bed crying into a pillow. The next day I felt better and continued with my medication and have not had a problem since.

Looking back, I do think stress has a lot to do with this condition. I was very stressed after cooking Xmas dinner for 12 people and hosting an all-day event. Obviously the build up to Xmas day took its toll on me. I have also tried as best I can to eliminate stress from my life, i.e. doing yoga.  I know I can’t be stress free all the time but I do feel worse if something stresses me out.

 When I first got diagnosed I researched Tegretol a lot, and asked if you can drink on it before I attempted it and I found forums that people said they did, so that kind of gave me the green light.

Thank you for sharing your story and it would be great if others who have had any similar experiences on Tegretol please share them so we can get a better picture.

 Best wishes Colin and pls stay in touch too and let us know how you getting on.

3

Hi Colin,

Sorry to hear of your bad experience. I was always informed by my Dr not to take alcohol with any medication but I always checked the leaflets anyway. Whenever I took tegretol I found I had to take it after food as I couldn't take it otherwise due to feeling nauseous. But I also found when I did have wine at first I felt my face and head tighten a bit but after finishing my meal and carrying on with drinking the wine I felt fine. I still carried on having wine whenever I was on Tegretol but it usually turned out to only be one glass anyway.

When I could no longer take Tegretol and was put on other medication I still had wine with no problems. I think it is a case, for me anyway, to eat first, take the medication and let that settle before having the wine. But I agree it is all about being careful and perhaps taking a drop at a time and then if any sign of feeling unwell to stop. 

I hope your tests are all clear, but do let us know how you get on.

Take care.

kind regards

Gloriana

4

Many thanks for sharing your experience Gloriana.

Seems like “Wine” is the common denominator here. I don’t drink it much, I drink Vodka as my preferred drink. Perhaps the ingredients in wine doesn’t mix well with the Tegretol? I don’t take meds during the day just in the morning and at night before bed, so perhaps it has something to do with not having been digested before you start drinking.  The time I did take it before I drank, I got ill.  That was when I was taking it 3 times a day.  Its just a thought and perhaps worth considering…?!

5

Hi Tanz,

 For your reply. I find on this forum there is a lot of good advice and some remedies too. 

I agree I think it should be considered first, especially for people who have been diagnosed with TN for the first time.

I used to take Tegretol four times a day and I put on weight lol. That was because I could only take them after food, so three meals a day and Snack at night would do that. I guess that is why my system got used to the wine, not that I had wine often back then.

Im ok at the moment as I presently in remission. But I guess if my TN returns  I will wait until the medication is in my system first and then only after food. Also I think it affects different people different ways. 

I used to to love Vodka and orange, in my younger days lol. But I'm partial to Baileys now 😬.

kind regards

Gloriana

 

6

Hi G

You lucky fish being in Remission.  I long for the day :o(

I just want to wake up “normal” again and not every morning open my eyes and think what will today bring (pain or not). I must admit mine is behaving reasonably at the moment. I know I’m not out the woods yet with a flicker in my cheek every now and then or a throb in my tooth to say “I’m still here”!

Lucky for me I lost a lot of weight, (2stone) as mine started as a gum infection.  I couldn’t eat for a month whilst I had that, so I drank heavily to take the pain away. Then a month later I got diagnosed and put on medication, but I felt terrified to eat due to tooth pain. I must admit I don’t have a problem with when I take it before or after food. I haven’t really given it any thought I just take it.

I do love a Bailey’s too!

Take care and I hope your remission lasts forever ;o)

7

Sorry to hear your sad news Colin, I lasted only 3 weeks on tegretol it made me violently ill just in general I couldnt take it so i tried several other tablets and now i take Oxcarbazepine, i can drink alcohol on it it just heightens some of side effects so eyesight can get a bit smudgy and you may feel a little bit dizzy. I choose that over never being able to drink a drop. T

8

Hi Tanz,

When I was first diagnosed with TN over twenty years ago it was really bad. I didn't want to eat or talk as it really hurt. I was so happy when I discovered it had gone after nine months. But then it returned none months later and that had been my regular pattern. Then after a six yr gap it returned with a vengeance. Automatically I was put back on Tegretol. But I hated taking 200mg straight off as I felt so sick and always ended up lying on the floor. If I hadn't eaten I would heave something chronic. I would not wish this on anyone. So I started breaking up the tablet into 4 x 50mg pieces 4 x a day. I decided it was worth the discomfort rather than the nausea. Once I reached my 1200mg I was fine. 

Unfortunately this his time around Tegretol didn't work for me and I ended up with Pregabalin. Apparently it's supposed to be the 2nd or 3rd best on the list for TN. I take cod liver oil capsules daily now so we will see what happens inMarch 2016 whether or not my TN returns. I too still get tingles in my cheek and tooth but not enough to warrant going back on the low dosage Pregablin.

Still I can always have some Baileys to deaden that much lol.

How long have you had TN for now?

Kind regards

Gloriana