Bohumil Carbamazepine since 21 years now

[Bohumil]

At first I want to introduce me as German, so my English perhaps is not perfect.

I am 56 now, and I want to withdraw the Carbamazepine that is my medic since 21 years now.

Why now? It seems not to help a lot.

I did withdraw from Quetiapine that came into my life last year on behalf of a hypomanic phase that lasted the whole summer, with alcohol drinking. I felt that Quetiapine should not belong to me. I wanted to get it out after it did its job. My psychiatrist was not convinced but finally she permitted me to do so and told me how to do it. You can see in my signature the steps. Pretty fast compared to what I read here. I have taken Quetiapine in smaller doses in other years as well but never felt it would anything for me despite of making me tired. In this last hypomania it seemed to help me come down without falling to depression. The latter only followed after I was on 0 mg of Quetiapine. 

After this me and my psychiatrist remembered that I asked her for substituting Carbamazepine with Lithium. There is a man in my self-help-group who is fully satisfied with Lithium. But she is not a fan of Lithium. So she asked me to do some own research on this matter and advised me also to look at Olanzapine, Risperidone and Quetiapine again as mood stabilizers. She mentioned Lamotrogine as well but said it would not be her favorite. 

So I started research. "Unfortunately" I found some interesting sites with authors like David Healy, Roger Whitaker, Joanna Moncrieff, I found mad in america and madness radio. Of course for a while i kept myself pretty skeptical about all this. But it's on my mind now. It does not leave the scene. So now I'm ere. 

I read some of the stories here but I do mot find my own with this long and nearly mono-medic life with Carbamazepine. 

 

Perhaps I shall give a short look into my biography. So I'm 56 years old meanwhile. I was diagnosed when I was really young and my main problems up to there were inabilty to drink alcohol in a normal manner. I wanted to get drunk when I was drinking. That was very often but very "complete". My father was alcohol addicted, in his elder years He became sober with the help of AA. My mother did not seem to be ill when I was child and teenager. But when my father stopped drinking she started with depressions, later some short manic episodes. She died in suicide some weeks after she was in psychiatric hospital. I brought her there. She was psychotic after dropping her medication at once with no more contact to her psychiatrist. That of course underlined my believe in my medication. And it underlined my idea of never going to a psychiatric hospital if avoidable. This latter is already an idea of my first days with my diagnosis, footing on that movie with Jack Nicholson - One Flew Over The Cuckoo’s Nest. So in those weeks in 1987 with my diagnosis I mainly wanted to get clear about what that diagnosis meant. And after that I left that doctor for 13 years. Here and there I tried to find some help with my depressions but never found anything acceptable or in a timely fashion. Oh, forgot - my first psychiatrist let me out with a super nice prognosis: you will be down on welfare at the age of 30. That is what I fulfilled. What did I do in those yeras between 20 and 30? All and nothing. Studying some kinds of artist, teacher - with now success. Jobs in restaurants, delivery, mover. Again and again unemployed or status student without studying. Finally giving up the study attempts and finding with help of jobless administration a kind of school/academy that made me a low-level data worker. After becoming jobless again they added a course that made me a network administrator (MCSE). From there on and with a wife at my side, later two children, I started a job that I'm still on. What had happened? Now, my first child and my ongoing alcohol abuses did not fit. I wanted to become a sober dad for her. So I stopped drinking. I revisited my old psychiatrist and told him that I want to start with that Lithium therapy now. He said, ok, but meanwhile we have something else: Carbamazepine. So we started that. My family, my job, my sober life - it worked. 

Why now giving it up? Why now asking for help here? Well, it all stopped working smooth when my first child was raised and left us parents in order to start her own life. It began with some small attempts with drinking alcohol. Each was a total catastrophe. The last in last year was so bad that I went to psychiatric hospital on my own. I was unable to stop drinking. I was unable to stop my hypomania. 

For now this is it. I don't know if someone here will understand what I'm in now. I had a quite ok childhood. My father was a nice drinker - never loud,never in a bad mood, of course not beating his kids. He mainly suffered from it on his own. And of course my mother suffered from it. My elder sister said, not daddy was the problem, mother was. They all say, my wife, my sister, her husband, that my relationship with her was very tight, perhaps too tight. But I cannot remember something that would fit to abusion. It was just tight, yes.

And the relationship with my wife was never easy. She has diabetes and we never really fitted. I remember I told her when we met that possibly I'll never be able to run a family. But I learned from her illness that you need to take your medicine if you are ill. I learned it on my own, just by being with her.

 

Ok, I have to stop this for the moment. I have to leave for an appointment with my elder daughter 🙂

 

Regards, B.

[Altostrata]

Welcome, @Bohumil

 

As I understand it, you want to go off carbamazepine because it does not control your drinking?

 

In general, we recommend a very slow taper, see Why taper by 10% of my dosage?

 

But we cannot offer any peer support particularly to going off carbamazepine, and we cannot help someone taper who's drinking. We have found that alcohol ingestion in combination with psychiatric drugs and tapering causes odd symptoms -- as you have found.

[Bohumil]

Hello Altostrata,

 

thank you for welcome. And thank you for reading my post.

Maybe I told my story wrongly. Yes, I did have trouble with alcohol in hypomania phases. But my Carbamazepine was not meant as help concerning alcohol abuse. It was my mood stabilizer. And I think it did not really help me from  not coming into hypomania and depressions. My biography since year 2000 was no alcohol, family start, good job start plus intake of Carbamazepine. All running "fine" up to now. But only I made some attempts to drink alcohol since the year of 2017. Short failing attempts. But in each hypomania I tried it again - round about once in a year. Until last year when my trouble with alcohol became too big that I put myself into a psychiatric hospital for 2 weeks in order to get out of drinking and in order to stop that hypomania with bigger intakes of Quetiapine. Quetiapine is tapered off since some weeks - not slow but as my psychiatrist told me: I was already down to 150 mg and from there on she said 50 off each 10 days. 

So now I want to taper off Carbamazepine via slow taper. And I plan not to try alcohol again. I am quite hopeful about this because I did it already 17 years. Only the last 4 years were losses.

Yesterday I was at my psychiatrist and told her that I will do so. She was unhappy about it but agreed to accompany me on that way. We will keep tight contact and in case of new hypomania or even worse hypo+alcohol I will accept Quetiapine or hospital.

 

Best regards, B.

[Altostrata]

We recommend tapering all psychiatric drugs the same way: 10% exponential taper per month, the amount of the decrease keeps getting smaller. Using the liquid form, at first in combination with lower-dose tablets, is the best way to taper. Carbamazepine liquid may be available by prescription, or you may need to get a prescription for custom-compounded liquid.

 

Or, you might be able to get prescription tapering strips from the Netherlands.

 

Please let us know how you're doing.

 

[Bohumil]

Hello Altostrata,

 

I had already asked myself why it seems so difficult to find information about tapering Carbamazepine. But your link to the Netherlands looks interesting. I will ask my psychiatrist about this possibility. 

I hope she is interested. Because of when I tapered Quetiapine she simply told me to go down 50mg every 10 days. And I knew nothing about your site and all the info I found meanwhile. I just thought to come away with it because I was fearing that it might destroy my ability to sleep pretty normal at least most of the time. I do even sleep pretty good in hypomanian phases. Of course less but not as it is described in the literature where you find this one hour or no sleep and so on pretty often. So I tapered off as she said. And as a result I found myself in a depression for weeks. I even had first little thoughts about suicide that I never had before.

You know my mother died in suicide after cold turkey her meds - I don't know what she had at that time. She was off hospital - first time in psych hospital in her life - then left alone with her meds. She missed one or two appointments with her psych outside the hospital. And that was it. Only now, years after that happened I slowly start to understand what might have happened to her.

I will keep you updated ...

 

Best regards, B.

[Bohumil]

Hi, for quite an amount of time I was off here. But I'd like to update my story now. So, what has happened since May? I contacted my psychiatrist and after her "Go" my insurance. At first they did not understand what I wanted. I explained. They made their decision: No, they did not accept. Reason: I have asked for tapering strips for my usual Carbamazepine retard. And they explained to me that they do not understand how a retard medication can be made in those small doses. 

My psychiatrist said that is nothing to worry about. Since then I am going down in steps of 50 mg. Meanwhile I am at 100 mg in the morning and 100 mg in the evening. I had no other choice I thought. But of course it somehow bothers me. I am a little bit anxious about the steps down from 100 to 50 to 0. At least there I would like to have some more safety in the process. Perhaps I will try to ask my insurance if they admit if I ask for unretarded Carbamazepine.

I am slight depressive all the time. It is no good time. I even felt nothing during a pretty holiday trip to Italy. Nice weather, all fine. Me taking photos of all the nice landscapes and old cities like Firenze or Bologna or Venezia. But inside me was no feelings for it. It was a mechanical thing I did. OK, it was a journey I made alone. And when I showed these photos to my family they could not remark how I felt during those two weeks. 

I don't know if this has to do with my tapering down the Carbamazepine in too big steps. Or if it has to do with tapering down the Quetiapine earlier this year in too big steps. Or if it has do with summer 2020 when I was up in a long phase of hypomania as described in my first statement here and in my signature.

 

By the way, I meanwhile found out that my mothers med was Lithium.

 

Alcohol was no problem for me since I stopped it last September in those two weeks in psychiatry hospital.

 

Best regards, B.