keppra and the 'epilepsy personality?'

[kirsten]

Hi. I'm a newby and I'm just going to jump in. I think my last post got trashed in the virtual dustbin, but forgive me if this is indeed a double post.

I got control of my TLE four years ago on tegretol. Before that, I had tonic clonics often, and status more often than not after seizures, but I wrote a lot, and I wrote well. The two books I wrote were published and well reviewed. For the four years on tegretol, I felt happier and calmer, but I stopped writing entirely and my love for art, film and philosophy vanished. I stopped writing and seeing beauty in the world. Tegretol gave me SIADH two months back, so I've been changed to keppra 750mg twice daily. On this drug, I have my personality back, I am writing again and I feel a sense of purpose, although I am not quite as calm or happy as I was on tegretol. I prefer being this way because I would rather have a sense of identity and purpose and be doing what I love than have the bland, generic happiness I had before. In any case, I am happy enough: I think I have a more normal happiness that comes and goes according to circumstance. although I do sometimes feel overstimulated.

The problem is that my neuro prescribed my current keppra dosage with no indication of an intention to increase. My psychiatrist, who did her thesis on TLE related psychiatry, believes my current thought patterns and motivation to write is indicative of a low seizure threshold so she wants to push the keppra dosage up to 1000mg twice daily. She says I'm not on a therapeutic dose and that what I have now is unsustainable because my seizures will eventually ground me and make me treatment resistant.

The thing is that I can see no evidence of seizures. There have certainly been no tonic clonics since I went up to the current dose, and there are no black outs or any recent memory loss. I see no disorder here and am confused as to why I am being pathologised. I am well aware that I don't have a medical doctorate, and that that makes me incapable of forming a competent opinion about this, but I feel strongly enough at the moment to advise my doctor as to where she should shove her extra 500mgs of keppra. I'm not a noncompliant patient, but I feel I deserve to have my personality and talents, and not be stunted by medication because of some theory about an epileptic personality. I would be grateful for any insights, knowledge and experience on this issue from all of you so that I can be more informed about my decision.

 

[Nakamova]

Hi kirsten, welcome to CWE!

My psychiatrist, who did her thesis on temporal lobe epilepsy related psychiatry, believes my current thought patterns and motivation to write is indicative of a low seizure threshold so she wants to push the keppra dosage up to 1000mg twice daily. She says I'm not on a therapeutic dose and that what I have now is unsustainable because my seizures will eventually ground me and make me treatment resistant.

It's great that your psychiatrist has an interest in epilepsy, but she is not a neurologist, and you should consider that while weighing her advice.

I'm not a neurologist either, but here's my two cents: There are all sorts of ways that epilepsy and epilepsy meds can affect our brains. However, this is the first time I've seen "motivation to write" diagnosed as a sign of a low seizure threshold. Even if your psychiatrist has a hunch that you may be vulnerable to future seizures, the fact that you are not having seizures now (and are basically happy) means that there's no pressing reason to make any changes. All of us with epilepsy try to strike a balance between seizures and side effects, with an aim to maintaining a decent quality of life. It seems to be that you are pretty close to that sweet spot now. There's always the possibility that you may need to tweak the meds at some point, but I see no reason to mess with them now. And while some folks do become treatment-resistant, that doesn't appear to be your history with meds, and is not a sufficient reason to push for a higher dose.

I am well aware that I don't have a medical doctorate, and that that makes me incapable of forming a competent opinion about this.

Not true! Treatment decisions should be made in partnership with our doctors, not at their behest. Yes, the docs can help us make wise(r) decisions, but often their advice is as much "guesswork" as ours, and can have limited predictive power, especially where meds are concerned. Therapeutic dosages and responses to anti-seizure meds can vary widely. While there is often a suggested range, many folks fall outside of that range on either side. When I first went on my current med (Lamictal), my neurologist insisted that I needed to be at 300mg/day or higher to have seizure control. I resisted, stopped at 250mg/day and tapered slowly down to 150mg/day. I have been seizure-free for over 4 years. I would also have been called "non-compliant", but I know that I made an informed decision based on what I know of how my brain responds to meds. I was also well aware of the risks and responsibilities if my decision was incorrect.

In that spirit, I think you are wise to trust your instincts and ignore those of your psychiatrist. Continue to pay attention to how you feel, and discuss any medication questions with your neurologist (not your psychiatrist) as needed.

BTW the whole concept of the "epilepsy personality" has been more-or-less discredited. You might be interested in the article at this link http://www.epilepsy.com/articles/ar_1064250059, particularly the concluding statement:
"In the end, it appears that the full range of behavioral features of the interictal personality disorder or "epileptic personality" is very rarely seen in a single individual. The link between this syndrome and epilepsy is strongly questioned."

Best,
Nakamova

 

[Fedup]

kirsten

The one thing I think you should realise is a therapeutic dose is a recommended amount to be prescribed by a doctor but the dose give to each person is different, for the simple reason each and every person is different, so the amount it takes to control my seizures will more than likely be different from yours provided we are on the same medication. I do not believe your psychiatrist is correct only your neurologist and you together can decide this.

I think Nakamova has made very valid points as well and like said you should consider them.

 

[JustAnotherName]

I don't know much on this issue, but I do know that I would trust my neurologist over a psychiatrist, regardless of what he or she did a thesis in. That's just my opinion, though.

 

[Eli]

Good article, Naka, thanks.

Kirsten,
Through my epilepsy experiment I've dealt with and have been prescribed meds by er docs, gps', neurologists and finally an epileptologist. It was pure hell! At that point I was still undiagnosed and uninsured. Andddd they nearly killed me with their cocktail of meds - I didn't meet my maker but I wasn't expected to live!

I love my current neuro; he's the one that listened to me and put me on keppra.

I went out to the west coast for a year and my local neuro there had mri's and other tests run. After telling me I had epilepsy, brain scarring, etc he upped my keppra, tried adding other meds and said my brain was trashed. He then referred me to an epileptologist at the epilepsy center.

She (my epileptologist) and her team were amazing! I started documenting everything - seizure activity, eating, sleeping, menstrual cycles, everything! She let me slowly reduce my meds and what time I take them daily. We added vitamins and I made lifestyle changes.

My point, as others have stressed...it's your body and everyone is different. Document whats going on and track how the doses affect you. I used to have several daytime tc's a week and status often. I've gone into cardiac arrest and been resuscitated too many times.

Granted, I don't drive, can't work, am stuck in the house and have to have someone with me/take me to appointments/shop but it's alot better than it was. Esp given that the other year my family was told by the hospital that if I did live, they expected it to be as a vegetable.

PS - Robin and others have provided good info on how diet can affect epilepsy for some!

 

[kirsten]

Sorry it took me so long to respond to your replies. I read them early but got overloaded with work and distracted, so I've been aiming to respond for quite some time now. What you've all said has helped me to resolve the issue. In response to your replies, I sent an email to my psychiatrist telling her I was suffering no symptoms and wanted to increase the keppra only if problems emerged. I expected her to see me as noncompliant but, to my surprise, she said she agreed! So we are staying where we are with the meds. I never expect the best outcome possible, so this is really surprising. Anyway, if it weren't for the confidence I gained from your messages, I'd probably never have said anything to my doc, and taken unnecessary medication. Goes to show how important it is to speak up with doctors. I have also decided to take what my psychiatrist says about my epilepsy treatment with a grain of salt, and have my neuro control my treatment in the future.

 

[Eli]

...So we are staying where we are with the meds. I never expect the best outcome possible, so this is really surprising. Anyway, if it weren't for the confidence I gained from your messages, I'd probably never have said anything to my doc, and taken unnecessary medication. Goes to show how important it is to speak up with doctors. I have also decided to take what my psychiatrist says about my epilepsy treatment with a grain of salt, and have my neuro control my treatment in the future.

Yeahhhhhhhhhhhhhhhh and graties! So happy it worked out well!

:woot: :woot: