Are the Docs right?

[Janus]

I met with a new Epilepsy doc yesterday and i asked him about my memory loss, libido loss, and anger in regards to my keppra. He said my memory loss is probably due to me having more partial seizures now than i know. That i must be having partials and not remembering them, maybe in sleep. And that that makes you loose memory more than keppra. he said that libido loss is more caused by other AEDs than keppra so that can't be the problem here. Anger, yes likely keppra. I almost started yelling at him "Who the fuck do you think i am?!!" But he was nice. I am staying with him just because his 'bed-side manor' is so much nicer than my other Epilepsy doc. And i still wonder if hey do not consider my diet being part of my problem because i think it is. It is my body and i have been dealing with this and watching this, closely for years but he does not believe me.? WTF? He said we could try adding Lamectil but we will stay with keppra exactly as it is until my girlfriend moves out here and we sleep together every night and she can tell if there are regular nocturnal seizures. she will not be moving here until Spetember! and my life is going by with me being tired and dumber by the day! what is a poor guy to do?

 

[Cint]

Are the docs right? Not really, IMO. They're just making educated guesses based on what they've learned over the years and from what pharmaceuticals have told them. Plus, if other patients have never had the same problems, then it must be "your imagination" or some other problem, but not from the meds they have prescribed. At least that is the treatment I have received over the years. Memory loss can be from meds and seizures. I take keppra and Topomax. I know Topomax does cause memory loss and Keppra adds to it. Ask the dr. if he's ever tried any of the meds. onder:

 

[Nakamova]

Memory loss: Generally speaking, your doc is right in saying that seizures are more likely to affect memory than the Keppra is. In some studies, Keppra has actually been associated with improved memory. (See http://www.ucsf.edu/news/2012/08/12481/epilepsy-drug-could-help-alzheimers-related-memory-loss). HOWEVER, that doesn't mean that Keppra isn't affecting your memory, only that other scenarios are more likely. One of the best ways to get a sense of what's going on is to have a neuropsych evaluation done. It's basically a series of tests to get a baseline reading on your memory and cognitive processing. It can potentially help identify what functions are affected and what may be affecting them. And the neuropsychiatrist can make recommendations on changes or workarounds to help. Ask your neuro about this possibility.

Libido: While there haven't been a ton of studies linking Keppra to loss of libido, there have been plenty of anecdotal reports and a few medically-documented ones. (See http://www.ncbi.nlm.nih.gov/pubmed/22560189). Your doc shouldn't rule out Keppra as the culprit, because the whole issue is still poorly-studied and poorly-understood at this point.

Diet: Some neurologists are open to dietary treatments. Most are not. My neurologists have never asked a single question about what I eat. I think the tool the docs are most comfortable wielding is medication. Unless they are at Johns Hopkins (see http://www.hopkinsmedicine.org/neur...as/epilepsy/adult/adult-epilepsy-diet-center/) anything else makes them nervous... So you may have to get more proactive: Which aspects of your diet do you think need changing? Are there changes you can make safely on your own, or would you feel more comfortable with your doctor's supervision? One place to start your research would be http://www.atkinsforseizures.com/

Sleep seizures: Any chance you could have an overnight sleep study with EEG? That would be a whole lot more useful than waiting for your girlfriend arrive and start taking notes. Make the doc do his job! Ask him if a sleep study can be scheduled in the next few months so that you and he can make better-informed decisions about your treatment.

 

[arnie]

I've been on pretty much only Lamictal for 15ish years, and only in the past year or two has my memory really been getting worse than normal, and only in the past few months have I really started worrying about that and other, more intangible effects. I am convinced that I am having lots of subclinical seizures, which seems to be what your doc is saying to you. As to the libido issue, on the whole I have no problem with that, BUT if I have even a really small partial it will pretty much instantly take the libido right away. It may only be for an hour or so, but it sure does kill it for a time. My thought is that you might be having subclinical seizures. I also have something I consider "gasp" seizures. (I just had one about 10 seconds ago while I was typing this). I take a sharp breath, feel like I have to swallow, feel a little adrenaline rush and a coldness, and then it fades away. The feelings for this one have just about dissipated, and it started when I began typing the sentence about the gasp seizures. That's why I thought about them.
I can also tell that even the little ones like I just had would cut down on the libido for a bit. Anyhow, best of luck continuing to navigate the labyrinth which is epilepsy!

 

[Cint]

Memory loss: Generally speaking, your doc is right in saying that seizures are more likely to affect memory than the Keppra is. In some studies, Keppra has actually been associated with improved memory. (See http://www.ucsf.edu/news/2012/08/12481/epilepsy-drug-could-help-alzheimers-related-memory-loss). HOWEVER, that doesn't mean that Keppra isn't affecting your memory, only that other scenarios are more likely. One of the best ways to get a sense of what's going on is to have a neuropsych evaluation done. It's basically a series of tests to get a baseline reading on your memory and cognitive processing. It can potentially help identify what functions are affected and what may be affecting them. And the neuropsychiatrist can make recommendations on changes or workarounds to help. Ask your neuro about this possibility.

I did have that done and my memory is bad (of course part of it is due to brain surgery and many seizures), but the neuropsych did say that part of it is due to the meds also. I was taking Keppra and Topomax when I had the test done.

 

[Belinda5000]

I met with a new Epilepsy doc yesterday and i asked him about my memory loss, libido loss, and anger in regards to my keppra. He said my memory loss is probably due to me having more partial seizures now than i know. That i must be having partials and not remembering them, maybe in sleep. And that that makes you loose memory more than keppra. he said that libido loss is more caused by other AEDs than keppra so that can't be the problem here. Anger, yes likely keppra. I almost started yelling at him "Who the fuck do you think i am?!!" But he was nice. I am staying with him just because his 'bed-side manor' is so much nicer than my other Epilepsy doc. And i still wonder if hey do not consider my diet being part of my problem because i think it is. It is my body and i have been dealing with this and watching this, closely for years but he does not believe me.? WTF? He said we could try adding Lamectil but we will stay with keppra exactly as it is until my girlfriend moves out here and we sleep together every night and she can tell if there are regular nocturnal seizures. she will not be moving here until Spetember! and my life is going by with me being tired and dumber by the day! what is a poor guy to do?

Your doc is right about memory being due to your seizures.
with docs a lot of it is educated guesses.
You can always refuse to change a med or increase a med I know I've done it.

 

[valeriedl]

I have pretty bad memory loss and I relate that to my seizures. I don't know if any of the meds that I'm on have anything to do with it too?

After my very first seizure, which was about 10 years ago, I lost around 10 years of memory that happened before it. A little is still up there but not much. For the next few years after a seizure I would lose hours to days of memory. Now when I have a seizure if I black out during it (that's what I call it) I don't know anything that went on during it. I still may loose a little bit of memory of what happened before it.

My short term memory is ok but still not great My long term memory is very bad. After a few months things just start to fade away. People will tell me places we went and things we did and I don't remember any of it happening.

I take Keppra and I have horrible Keprage from it. Sometimes I don't know how I don't punch some people in the face at times because I get so mad at them. I've gone off on people in stores and even family members, I just can't help it. I'm yelling before I even realize it.

My libido is ok, not. I've never had any problems with that. I'm actually surprised because I have heard that some meds can effect it.

As Belinda said you can always refuse a med or ask to be taken off of it because of the side effects.

 

[Penny]

Yes memory loss is due to seizures. How do I know. Well, YEARS ago, before I had my stroke and the seizures started I had several ECT,s because of extreme depression. I lost a lot of memory. Some came back, some not. This was caused by the seizures caused during ECTs.. Its happening again from seizures I have now from having had stroke. Hopefully the meds will keep them under control.

 

[Janus]

Thank you all!! I just love hearing others' experiences. My lover will be coming to visit next week from Wisconsin and i can not wait for her move. shell be moving here in the Fall. the doc did say it is a much better look at my condition if we have someone to ask that is with me most of the time, like sleeps with me. When i talked to her about memory issues I plainly said "I don't remember having any memory problems!"

 

[KaySara]

My memory loss is very bad and I only noticed loss of memory is the past 3 or 4 years. My E, I have it almost 18 yrs., has become increasingly bad over the years. I had to give up my driving in the past 10 yrs., alcohol since the beginning, and I enjoyed a night out with the lady friends!! Now my life, as I write this, is good, the form is good, my relationships with my family is good. But last week it was hell. I was dead, no emotions, just in a deep depression and what is the cause?? Is it the E alone or is the the med? I believe the meds have much to do with it because I have not suffered with depression until recentent years. I have always had a positive happy outlook on life but now at times it frightens me it is so negative. Oh, was reading an article that marijuana can be a real assistance in times like this, in fact it can have a positive effect on E, can reduce seizures. Anyone know anything about this?? No, I have not tried it but at times I am willing to try anything which will offer a relief from the hell I find myself in.

 

[Janus]

KaySara- I am very interested in the cannabis treatments. I heard that they are making medical grade stuff that will not get you 'high' but stop seizures and make you feel better. I KNOW depression and so totally empathize there. I do not feel like getting stoned would help my memory so i do not want that, but i am willing to try anything that may help (in safety). All the best.