childhood medication - Tegretol Retard

[eleniu]

Hi,

I'm trying to come to terms with myself and my life, growing up, eating Tegretol Retard for largely my whole childhood.

(I fell down a stair and was diagnosed with frontal lobe epilepsy.)

I was medicated with Tegretol Retard from the age 3.5 until I were 16.
Now I’m 40 and have put an enormous amount of time and effort trying to deal with my low self-esteem, which of course can happen to anyone, but for me, personally, I tend to address this to the medication and the self image one develop in interaction with other people. Growing up in a blur, I often think that I could have had a better, happier and more self confident life? Now I want to try sort out what was due to medication and what was not. Probably impossible since the only childhood there will be, is the one I had, and all I can do is deal with it. Maybe I just need to hug that child, I don’t know? It’s hard.

I have the fullest respect for those living with seizures, having to choose between medication and having a life and not. I saw this forum today, searching on internet and been thinking about it all day. I’m sorry bringing my problems here, I’m not taking any medication any more, it is also a very long time ago, more than 20 years. I do not know where else to ask. I live in Sweden, and Tegretol Retard (from what I have been told), is not in use here any more other than in elderly psychiatric treatment and some other that I have forgotten.

I read some of the post here and was baffled to the extent I recognized myself. I haven’t dared to read more before writing this, because I didn’t want it to color my post too much. I was especially baffled by others describing out of body experiences, depression, confusion etc.

The thing that has effected me the most up to date is the treatment of others, as if I was dumb, unintelligent, whimsical. In my own mind I was crisp clear. In early age I felt like I was living in a bubble, I had very hard communicating with people, and in a conversation I often tended to get stuck in one topic, unable to switch. But inside myself I had a very strong and imaginative life, and other people often had to compete with this inner world of mine to get my attention. (I even have some drawings from when I was a kid, with a bubble around our house). In the age around 12 -16 I had some periods that perhaps is best describes as psychotic with paranoid thoughts and depressions. I didn’t tell anyone at the time, but that was especially hard. Also I remember doing my homework, crying because I was so tired, realizing I once again had read the same line of text over and over again.
-

I’m wondering if I have some residues of something?

At the age of 19-20, I started to get short memory flashbacks, pared with intense anxiety. It can be any memory from any time in life, often of sad and bad memories, but sometimes good memories, although pared with this strong anxiety. I know they are stress related, since they are more common during stress, but I can’t help connecting this to the epilepsy or the medication. I hope this is not too far fetched so I’m not just describing regular anxiety attacks, I’ve had consulting for this, but never sorted it out. Still don’t know what they are? In worst cases I can have 10-20 a day if it is bad, I often say something too, a short foul word, I'm suspecting this is related to either the medication or some residue of epilepsy, but it is strange, this with the memory. They are very short in time, and I am sucked into them with this intense anxiety. (If there are people around that I do not know, I I am usually able to suppress me say anything). Also, recently, I noticed, helping my parent clearing out some stuff in their house, I saw a small key amongst all this rubble, a lot of rubble, and with a cunning precision I knew exactly where that key fit. My parents had been missing the key for 20 years, so they where very happy. This has lead me to think that there is something with my memory that is not normal. But I don’t know, maybe its just me, with regular anxiety, and not dealing with things. I don’t know. They are getting softer by the years. So that is good.

Also, when I quit with Tegretol at 16, over a period of six months, I started to eat pain killers - paracetamol, it was on my own choice since they made me feel better, still today, if we have paracetamol at home, I’ll eat them up, I don’t know why, it’s not like I’m in pain or anything, but something work. Do anyone know what that could be? why? Maybe they just make me feel better? (I know they are dangerous to eat excessively)


Sorry for a long rant.
I would be grateful for any advice.
Best

 

[epileric]

Welcome eleniu

I've been on medications all my life but on tegretol retard (in Canada it's called Tegretol CR) since I was in my early teens (I'm now 50).

Don't feel bad about venting your emotions here. We even have a "padded room" on this site where you can vent & only members can read it.

Almost all of what you described in yourself I see in myself, especially the low self-esteem, not being able to communicate & how people treat you. I've been getting the anxiety in the last few years too. In my teens I was always anxious but only recently I'll have days where I'm extremely anxious or depressed. I always thought it was the tegretol but if you get that way when you're no longer taking it I have to wonder if it's the seizures causing that.

Well check out the site & make yourself at home. If you're looking to find anything specific, there's a "search" option at the top of the page.

 

[Nakamova]

Hi eleniu, welcome!

It's tough to sort out the seizures from the side effects over the long term, especially disturbances in mood or cognition. Frontal lobe epilepsy can manifest as strong emotional feelings, and fear. If you are experiencing strange symptoms 20 times a day, i would suspect that the epilepsy is playing a role.

Your cravings for paracetamol may be related to the role it plays in the brain -- it blocks sodium channels, and also activates the endogenous cannabinoid system, similar to the way some AEDs work. So you crave it as a substitute for real anti-seizure meds? As you say, you should be careful not to consume too much -- you can damage the liver.

Best,
Nakamova

 

[eleniu]

I've been on medications all my life but on tegretol retard (in Canada it's called Tegretol CR) since I was in my early teens (I'm now 50).

Don't feel bad about venting your emotions here. We even have a "padded room" on this site where you can vent & only members can read it.

Almost all of what you described in yourself I see in myself, especially the low self-esteem, not being able to communicate & how people treat you. I've been getting the anxiety in the last few years too. In my teens I was always anxious but only recently I'll have days where I'm extremely anxious or depressed. I always thought it was the tegretol but if you get that way when you're no longer taking it I have to wonder if it's the seizures causing that.

Well check out the site & make yourself at home. If you're looking to find anything specific, there's a "search" option at the top of the page.

I’m almost certain that was the tegretol causing that. I have had none of those problems after I quit Tegretol. I’ve been fighting so hard since that, I’ve almost broke myself several times. But I've never been so messed up as I was in younger years on Tegretol.

Yesterday I read an article stating this:
“Unlike adults, cognitive*side*effects*in*children*occur against the backdrop of normal cognitive and psychosocial development, and treatment decisions made in childhood may have lifelong implications.”

I guess this medicine has the potential to mess you up own its own. You don’t need seizures to get there.

I’ve noticed for the anxiety that it helps eating fish oil. Don’t know why, doesn’t take it away, but it helps.

Hi eleniu, welcome!

It's tough to sort out the seizures from the side effects over the long term, especially disturbances in mood or cognition. Frontal lobe epilepsy can manifest as strong emotional feelings, and fear. If you are experiencing strange symptoms 20 times a day, i would suspect that the epilepsy is playing a role.

Your cravings for paracetamol may be related to the role it plays in the brain -- it blocks sodium channels, and also activates the endogenous cannabinoid system, similar to the way some AEDs work. So you crave it as a substitute for real anti-seizure meds? As you say, you should be careful not to consume too much -- you can damage the liver.

That makes perfectly sense, I will have no problem quitting with paracetamol now, knowing the cause of my behaviour. Paracetamol doesn't add or remove anything for me. I will very unlikely ever again eat any medicine related to epilepsy, and like I said above, these medicines seem to have the potential to cause these effects on their own. I have a messed up memory handling, that triggers when I’m stressed, there is no explanation to these sensations or flashbacks, no relation to my life, I don’t know any other way to explain them. I’ll try to remove the stress. I’ll try to live a healthy life.

I'm very heartbroken for all of this.

I'll try to read up this weekend on different food and alternative methods that can help.