Side effects of Epilepsy (not medication)

[EpiInternational]

Hey,
I am interested in what kind of other problems you face due to your epilepsy.

While I am primarily interested in problems related to your body/mind, and not the ones which might be caused by your environment (Co-Workers, Family...) feel free to discuss the latter here as well.

Ive been diagnosed with epilepsy more than 10 years ago, at the young age of 10 and my tonic-clonic seizures are very rare incidents. So rare actually that they dont bother me at all, especially since I am able to fully prevent them from happening even without medication, as long as I follow some simple rules ("Sleep enough" being the most important).

Much more inconvenient however are sideeffects like having trouble memorizing things and fatigue. I would even go so far as to say that those two symptoms are (in my case) the main problem of my disorder, as they truly have a large negative impact on my everyday life.

Anyone out there who is experiencing something similar?

 

[flesz]

mine is fatigue number one. And second i can't trust my mind with little things like turning the burners off the stove,shutting off the coffee pot, shutting the door so it locks. So i can't trust any thing for certain right now, one and a half years into it because of a stroke.

 

[Nakamova]

It's hard to separate out medication side effects from those of the seizures themselves, or from aging in general. In my case, as far as I know, I'm not experiencing cognitive issues, though I did when I was on a prior medication. It probably helps that I've only had epilepsy for 15 years or so, and that for the most part my seizures have been controlled.

You might interested in the article at the link below -- "Total Impact of Epilepsy: Biological, Psychological, Social, and Economic Aspects"
http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/204913

 

[flesz]

Thanks interesting read. Not sure if I'm screwed up from stroke or epilepsy. I'll tell you my hole story another time. Family suffers from mental illness. So I feel like mine I should be able to control. Ha

 

[Belinda5000]

I've had epilepsy more 50 years and it's caused quite a lot of problems with me.

I wasn't able to a lot of things because of side effects froma medicine that wiped my memory clean and becaus eof that I couldn't go to college and support myself and had to rely on others because of my seizures.I had so many different types of seizures I was ready to give up plenty of times. It took almost 25 years to get some control in my life for my seizures, but not under control and my seizures never have been I've been refractory since I was two.I just want a normal life is all and I've never had one.

 

[Garbo]

As mentioned above, I think it's hard to differentiate between the epilepsy itself and the medications. I do think the epilepsy has the potential to make a person tired (as mentioned above; I also experience this), but otherwise I am not certain.

 

[SlimBlue]

I'm not taking the P, but how often do you have seizures? If they're infrequent enough as to not bother you, and can be controlled easily by just maintaining a decent sleep cycle, have you considered the possibility that there's something else causing both your cognitive problems and E?

Have you had a CAT scan or MRI?

 

[Mr.21T]

It's hard to separate out medication side effects from those of the seizures themselves, or from aging in general. In my case, as far as I know, I'm not experiencing cognitive issues, though I did when I was on a prior medication. It probably helps that I've only had epilepsy for 15 years or so, and that for the most part my seizures have been controlled.

You might interested in the article at the link below -- "Total Impact of Epilepsy: Biological, Psychological, Social, and Economic Aspects"
http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/204913

Those first two pages brought me to tears. I'm looking at my computer right now with this face

I'm got into journalism within weeks of being diagnosed with epilepsy. I remember thinking about suicide as a child when I would be unable to stay awake in church. I remember being lost in religious dogma at age 8, 9 years old. The first award-winning short story (Thanks to years of hypergrafia)I wrote dealt with the psychosis that occurs when religious idealization becomes consciously absorbed by a troubled mind.

The stuff about stickiness, the social isolation, memory function is spot on. You don't keep many friends because you fixate on things like you're forced to fixate on e.

The depression and psychosis....don't get me started. The worst part is not being able to trust yourself. It's gets into everything you do


As far as meds, it's been medically proven that seizure meds make you dumber. The first time I actually followed a doctor's medical plan, I failed out of college due to the mental fatigue and loss of cognitive functioning. I developed a stutter and became completely uninterested in life. I knew there was a problem when I spent three straight weekend nights watching Law & Order reruns. The meds have a serious effect on your sex drive. I lost the ability to give my college girlfriend an orgasm when I started Depakote. Over the course of four weeks I witnessed the transition from genuine to replica, and I've heard that it's the same for women.

Let me just say that I don't believe that's an accident. The social stigma of epilepsy is still real to this day, and there are many people who would think we would be better off if we didn't reproduce.

 

[SlimBlue]

^ post edited, no need for this

 

[SlimBlue]

As far as meds, it's been medically proven that seizure meds make you dumber

Citation please.

 

[EpiInternational]

Thank you everyone for your replies so far. It made me realize (once again) how relatively small the impact of Epilepsy is on my life.

Thus far, Ive never experienced any social stigma (though I usually dont let people know about my disorder until I know them well enough. Which again is only an option because obvious symptoms like seizures or absences are of rare occurrence in my case),

Side effects of medication have been a rare thing for me as well, with increased fatigue being the worst and thus leading to a medication change from valproic acid to Levetiracetam.

All in all I can consider myself lucky and yet thats not really a thing to feel happy about. Sometimes I even feel bad about complaining about these comparatively minor issues but the memory issue in particular is dragging me down quite a bit.

It's hard to separate out medication side effects from those of the seizures themselves, or from aging in general.

That is true. However, as anticonvulsants should (as far as I am informed) not cause longterm problems (ones which would persist long after you have stopped taking the medication) one should be able to identify the side effects caused solely by the medication. But then again that probably depends on the kind of anticonvulsant you take.

You might interested in the article at the link below -- "Total Impact of Epilepsy: Biological, Psychological, Social, and Economic Aspects"

Thank you very much, that was an interesting read.

I'm not taking the P, but how often do you have seizures? If they're infrequent enough as to not bother you, and can be controlled easily by just maintaining a decent sleep cycle, have you considered the possibility that there's something else causing both your cognitive problems and E?

Have you had a CAT scan or MRI?

Ive had seizures roughly once or twice a year in the past. However, being responsible (/smart) concerning my disorder really wasnt one of my strengths in my teens so I am confident that even that small number can be decreased in the future with some adjustments to my behaviour.

That there might be another reason for my cognitive problems is something I thought of as well. I always suspected that something might be wrong with my sleep. However, the common reasons for the symptoms i am experiencing were quickly ruled out by the doctors.

The fact that my epilepsy is idiopathic is also something that always bothered me. "It might be genetic." is the phrase I got to hear time and time again.
Whats the cause of my epilepsy? The doctors dont know and therefore I dont know either :/

I did have two MRIs: One after my first seizure more than 10 years ago and one roughly a year ago .I asked to do the second one because I wanted to know if there was anything to see now that wasnt visible 10 years ago. Apparently there wasnt. There was nothing wrong nor was there anything to see that might be a clue to the cause of my epilepsy.

Thank you again for your posts. This has been an interesting read so far. Since I dont know anybody else who is suffering from epilepsy I rarely get to exchange words about it with anyone except my neurologist and sometimes just talking/chatting can be a help.

 

[SlimBlue]

I did have two MRIs: One after my first seizure more than 10 years ago and one roughly a year ago .I asked to do the second one because I wanted to know if there was anything to see now that wasnt visible 10 years ago. Apparently there wasnt. There was nothing wrong nor was there anything to see that might be a clue to the cause of my epilepsy.

I think a lot of us have no real idea what causes our E- it's quite unique from other conditions in this way

I rarely get to exchange words about it with anyone except my neurologist and sometimes just talking/chatting can be a help.

That's one of the best things about CWE - finally some real empathy from people that just get it. Being able to talk about it definitely helps.

 

[skyfire322]

For me, fatigue and memory loss are the two biggies.

 

[Nakamova]

As far as meds, it's been medically proven that seizure meds make you dumber.

I think maybe worth clarifying: Not all meds, not all people. There's a wide variety of individualized response. I didn't have problems on Dilantin (the first med I was put on) and I don't have problems on Lamictal (which I'm on now). When I was briefly on Zonegran, it did affect my moods and cognitive ability, in part because I was starving on it.

I recommend that folks with epilepsy who are concerned about cognitive and emotional issues -- whether from meds or from the seizures or from social pressures -- ask their neuro about having a neuropsych evaluation. It's a series of tests (memory, pattern recognition, etc.) that essentially take a snapshot of how your brain is functioning at a given point in time. The evaluator can often draw specific conclusions about what may be causing any issues, and make specific recommendations about ways to address them. And if you feel that significant changes have occurred over time, follow-up neuropsych evals can help gauge the degree and kind of change -- positive or negative -- that may have occurred.

Don't hesitate to ask your neuro for a referral to a counselor, therapist, or support group. The challenges of epilepsy can take many forms, and finding empathy and coping tools can make a huge difference in quality of life.

I do think that there remains a fair amount of stigma and misunderstanding out there. Many people still believe that you need to tightly restrain someone who is in the middle of a tonic-clonic seizure and put something in their mouth to keep them from choking. Most people have never even heard of partial seizures, and are completely unaware of how seizures can have lasting effects beyond the actual episodes. So... wherever/whenever possible it helps to educate and advocate.

 

[Mr.21T]

Citation please.

http://doublecheckmd.com/EffectsDetail.do?dname=lorazepam&sid=12084&eid=3057

Lorazepam may cause decreased mental clarity.
This drug may also cause the following symptoms that are related to decreased mental clarity:

Confusion/disorientation (common)
Reduced thinking ability/mental clarity (common)
Brain dysfunction

Medical Source Information
Yellow highlights indicate symptoms related to decreased mental clarity.

Nervous system side effects have been common and have included drowsiness, fatigue, confusion, impaired cognition, daytime anxiety, asthenia, amnesia, headache, dizziness, and ataxia. Orofacial dyskinesias have been observed rarely.

http://www.nytimes.com/health/guides/disease/bipolar-disorder/medications.html

Standard Antiseizure Drugs.
Valproate (Depakote, Stavzor), also called valproic acid or divalproex, is now a first option for many bipolar disorder patients.
Lamotrigine (Lamictal) may be used for maintenance treatment of adults with bipolar I disorder, for patients with rapid cycling, and for bipolar II disorder, in whom depression remains problematic after taking other mood stabilizer.
Carbamazepine (Epitol, Tegretol), a standard alternative antiseizure drug used for mood stabilizing, is usually the second anti-seizure medication of choice.
Other anti-seizure drugs used or investigated for bipolar include gabapentin (Neurontin), zonisamide (Zonegran) and topiramate (Topamax). To date, it is not clear if any of these newer drugs are useful for the treatment of acute mania.
General Side Effects. The side effects given here are associated with valproate. Other antiseizure drugs have similar effects and some specific ones of their own. Most are usually minor, occurring early in therapy and then subsiding. Valproate side effects include:
Gastrointestinal problems such as nausea, vomiting, and heartburn
Headaches
Visual disturbances
Ringing in the ear
Hair loss
Weight gain (a significant problem with valproate)
Agitation
Odd movements
Menstrual irregularities and a higher risk for polycystic ovary syndrome (PCOS)
Birth defects when taken by pregnant women during the first trimester (valproate has the most evidence for causing birth defects)
Cognitive impairment and symptoms of Parkinson's disease
Very serious side effects are possible. Antiseizure drugs can increase the risk for suicidal thoughts and behavior as soon as 1 week after starting drug therapy. The risk for suicidality can continue for at least 6 months. All patients who take these drugs should be monitored for worsening depression or unusual changes in behavior.

 

[Nakamova]

The meds can potentially have both subtle and serious emotional and cognitive side effects (as well as physical/physiological ones too). But not everyone has the same response. Meds can also reduce the number of seizures or control them altogether and in that way significantly improve quality of life.

Anti-depressants carry the same black box warning about suicidal thoughts -- it's a very, very important warning -- but there are also folks whose lives have been saved by them.

Believe me, I'm very resistant to meds. I find them to be a blunt instrument as a treatment tool, and I hope more personalized and sensitive treatments are developed ASAP. But I've also tried -- twice -- to go off meds with no luck.

 

[SlimBlue]

I'm not going to bother reposting those 2 quotes with all the 'can' 'may' 'might indicate' highlighted.

That's not fact mate- it's hypothesis at best, and opinion at worst- and you shouldn't post it here as such.

As Nak posted- not all meds, not all people. We react differently to our E and our meds.

Just to even it out, this is a link to the library about research that shows levatiracetem increases brain function..

I've been on Tegertol, Lamictil, and Keppra 17-18 years now- and my IQ has increased.

Yes, some meds can impair cognitive abilities in some people- but even if that were true for all, it still doesn't mean it reduces !Q or makes them 'dumber' as you put it. The brain is a wonderful machine and is able to cope with a lot of bad stuff- meds, lobectomys etc

It learns to cope, and so do we...

 

[SlimBlue]

So, instead of a newspaper article, and a website page devoted to lorezepam- which is very rarely used as a daily AED- please provide a citation of the medical research paper that proves all AEDs have that effect in everyone.

Thank you.

 

[MAB]

It's hard to separate out medication side effects from those of the seizures themselves, or from aging in general. In my case, as far as I know, I'm not experiencing cognitive issues, though I did when I was on a prior medication. It probably helps that I've only had epilepsy for 15 years or so, and that for the most part my seizures have been controlled.

You might interested in the article at the link below -- "Total Impact of Epilepsy: Biological, Psychological, Social, and Economic Aspects"
http://www.thebarrow.org/Education_And_Resources/Barrow_Quarterly/204913

I have no way of what is causing my issues. I easily forget thinks, mix up numbers and take wrong exits or turn the wrong direction while driving but I'm not sure if it's seizures, meds or aging.

 

[Mr.21T]

So, instead of a newspaper article, and a website page devoted to lorezepam- which is very rarely used as a daily AED- please provide a citation of the medical research paper that proves all AEDs have that effect in everyone.

Thank you.

We're speaking from personal experience in an attempt to help the thread starter understand symptoms that MAY be occurring. Both my neurologist and general practitioner have confirmed that decreased cognitive functioning are possible side effects, and I have experienced them while being treated.

I also went off meds for three years and experienced many of the side effects that were stated in the article that Nakavora posted. I don't think there's anything wrong with stating that those things happened. It obvious that you can't define all symptoms of e for all people. This is simply my experience. Links below.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229254/

Abstract.


Effective treatment of epilepsy depends on medication compliance across a lifetime, and studies indicate that drug tolerability is a significant limiting factor in medication maintenance. Available antiepileptic drugs (AEDs) have the potential to exert detrimental effects on cognitive function and therefore compromise patient wellbeing. On the other hand, some agents may serve to enhance cognitive function. In this review paper, we highlight the range of effects on cognition linked to a variety of newer and older AEDs, encompassing key alterations in both specific executive abilities and broader neuropsychological functions.


Carbamazepine

A number of cognitive and psychomotor effects have been linked to carbamazepine [Gillham et al. 1988]. A double-blind trial reported deterioration in measures of information processing speed and attention [Wesnes et al. 2009]. Other studies report poorer verbal fluency in adults with partial seizures than in control subjects [Aikiä et al. 2006], detrimental effects on memory [Shehata et al. 2009; Forsythe et al. 1991], worse arithmetic performance [Kang et al. 2007] and faster motor skills after discontinuation [Duncan et al. 1990]. Impaired movement time, reaction time, finger tapping rate and number cancellation were seen in one study, but these effects remitted by 1 month after treatment commencement [Larkin et al. 1992].

A randomized, double-blind, placebo-controlled study [Hessen et al. 2006] involving 150 epilepsy patients on AED monotherapy (mainly carbamazepine or valproate) found that drug discontinuation significantly improved performance in tests that required complex cognitive processing under time pressure, but not in more simple tasks of attention and reaction time. A later study reported similar findings, whereby performance improved in a verbal fluency task, a Stroop task, a language task and a reaction time task after discontinuation of carbamazepine [Hessen et al. 2009].

Sodium valproate and ethosuximide [Depakote]

Studies are listed in Table 1. A number of studies have indicated that valproate exerts little detrimental impact on cognitive function [Sun et al. 2008; Donati et al. 2007; McKee et al. 1992; Gillham et al. 1991]. However, a small minority of patients (5 of 364 adults in one study) can develop parkinsonism with associated memory problems and psychomotor slowing [Ristic et al. 2006]. One study reported no decline in tasks assessing coordination, memory, concentration or mental flexibility, although no practice effects were seen that were evident in controls, perhaps indicating very subtle changes in cognitive function

A few other relevant articles. Especially for young women who hope to raise children.

-2011 article on American Depakote settlements
http://www.lawyersandsettlements.com/articles/depakote/depakote-side-effects-birth-32-16881.html

According to a recent release by States News Service, the FDA has become concerned with regard to a number of epidemiological studies that suggest infants exposed to Depakote (among other related products) in the womb present with lower cognitive test scores than children exposed to other antiepileptic drugs, or none at all.....The FDA signaled its intention to update label warnings for Depakote to reflect increased risk for cognitive impairment, together with stronger language to reflect existing warnings for other Depakote side defects such as neural tube defects, cleft palate and lip, and various Depakote birth defects related to the heart.

http://www.fda.gov/Drugs/DrugSafety/ucm350684.htm

Safety Announcement

[05-06-2013] The U.S. Food and Drug Administration (FDA) is advising health care professionals and women that the anti-seizure medication valproate sodium and related products, valproic acid and divalproex sodium, are contraindicated and should not be taken by pregnant women for the prevention of migraine headaches. Based on information from a recent study, there is evidence that these medications can cause decreased IQ scores in children whose mothers took them while pregnant.1 Stronger warnings about use during pregnancy will be added to the drug labels, and valproate’s pregnancy category for migraine use will be changed from "D" (the potential benefit of the drug in pregnant women may be acceptable despite its potential risks) to "X" (the risk of use in pregnant women clearly outweighs any possible benefit of the drug)......this alert is based on the final results of the Neurodevelopmental Effects of Antiepileptic Drugs (NEAD) study showing that children exposed to valproate products while their mothers were pregnant had decreased IQs at age 6 compared to children exposed to other anti-epileptic drugs (see Data Summary).1 The difference in average IQ between the children who had been exposed to valproate and the children who had been exposed to other antiepileptic drugs varied between 8 and 11 points depending on the drug to which valproate was compared.