Side effects of Epilepsy (not medication)

[SlimBlue]

Both my neurologist and general practitioner have confirmed that decreased cognitive functioning are possible side effects, and I have experienced them while being treated.

Possible doesn't mean definite though, and the statement "it's been medically proven that seizure meds make you dumber" without any caveat, implies that all seizure meds will affect everyone in that way.

That's the problem here, because it's clearly not true. I'm fully aware that they can cause problems- as we all are- but nobody says that because of their personal experience it means something is now medically proven for all.

Because that experience doesn't mean it's medically proven as stated- all it means is it's a possible side effect that you experienced.

Please don't be offended that you were asked for the medical proof you talked about. If it were true, then it would be extremely important and indeed, extremely worrying to everyone on here taking AEDs, and all the people in the future that read your post- so I think it's only fair that you're asked to backup such a wide-ranging statement of fact on a public medical support forum.

Cheers.

 

[SlimBlue]

All the quotes you're posting are just mentioning the possible side effects of AEDs which are well known.

None of them say it's a proven fact for all- as you stated- because it's simply not true.

How would a research group poll every person with E on the planet, taking every drug, over years to measure their IQs ? It couldn't be done, and has never been done, and is therefore not a proven medical fact for all.

 

[Cint]

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.

Plus, Lorazepam (ativan) is one that is usually used in the ER. I've had to take it on several visits to the ER because of status. It can be a lifesaver as well.

I've taken 13 different AEDs for control of my E. What has worked for others has not worked for me. What has caused bad side effects for me, didn't effect others the same. Most people will get control after trying several meds. Not me.

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.

I'm one of those, too. Depression and E go hand in hand. So some anti-depressants may make some go over the edge, they may save another person's life. It is all individual.

 

[Mr.21T]

All the quotes you're posting are just mentioning the possible side effects of AEDs which are well known.

None of them say it's a proven fact for all- as you stated- because it's simply not true.

How would a research group poll every person with E on the planet, taking every drug, over years to measure their IQs ? It couldn't be done, and has never been done, and is therefore not a proven medical fact for all.

True, I would have edited the post if it didn't lead to such great responses from you and other posters. I was eager to express how the cognitive impairment affected my life because many people with e have been medicated for years and are unable to distinguish the symptoms of e with the side effects of the medication. In my case the cognitive impairment I got when taking Depakote was significantly greater than the effects of the absence and partial seizures. I also noted that my depression was worse OFF meds than ON meds, it's a conditional thing but was my experience.

But there were a lot of other birth defects in those FDA articles....and they weren't well-known to me until recenty. If I was a woman I'd like to be up on that

That being said, I really do see where you're coming from, but I for one would like to know possible side effects and measure the potential of them with the severity of my untreated e. Better to have too much info that can apply than not enough info to make an informed decision

 

[Cint]

That being said, I really do see where you're coming from, but I for one would like to know possible side effects and measure the potential of them with the severity of my untreated e. Better to have too much info that can apply

Untreated E can lead to a multitude of problems. Years ago when I fisrt started having CPs, I went to the dr. not knowing what I was experiencing. That ignorant dr. said I was hypoglycemic, without doing any testing. Two months later, I had my first full blown TC seizure and fell into the tub, hitting the hot water on the way down. I ended up with 1st and 2nd degree burns, so was in the hospital for 2 1/2 months and numerous surgeries. Plus, I've gone status several times while taking meds. So untreated E is NOTHING to mess with. Sure, there are side effects with ALL meds for ALL disorders. Have you read about SUDEP? Even patients taking meds have died of SUDEP. I know a mother here whose daughter died of it. So I do hope you have ALL the info on E and meds!

http://www.epilepsy.com/learn/impact/injuries-and-illnesses
http://www.epilepsy.com/learn/impact/mortality

 

[SlimBlue]

I understand that you're worried about the possible cognitive effects of AEDs - I think we all are for many reasons, and many of us do experience terrible memory/processing side effects

And I realise that's probably what you actually wanted to say. Which is totally cool. It's just on a forum such as this, we have to be careful when we bandy such words around like 'proven facts'. It's very easy to back up any given view point using any cherry-picked info, as well misinterpreting info in the first place- eg reading things as being definitive when they're presented as possible- which leads to an increase in our anxieties about the things we're researching, and of course nobody wants that..

Relating experiences is fine, A ok- we all want to share our experiences on here- but we have to be careful when 'facts' come into play. Because so many people use this board for not only reading experiences, but looking for solid info to help them with their E, we have to be double sure of what we say as fact.

As I said yesterday when we were chatting, if 1 med doesn't work for you- or indeed, makes it worse- you don't have to continue with it.

The 'game' of trying to find the right meds for us is all part and parcel of E, and you have to remember that not only will you react differently to other meds, but others will possibly have completely opposite experiences with them.

Anyway, I think I've made my point here, and we should un-hijack this thread and get it back on the topic of 'non-med side effects' - as it's extremely interesting, and most of us know that those are the ones which can affect us the most..

Cheers

 

[Fedup]

Mr.21T

I had no intention of replying to this thread until I read this

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

I am sorry to hear that whatever mental or cognitive issues which you find have been pushed upon you and become such a burden that it need to be pointed out to you about your seizure medication making you dumber however I must on my part and solely myself emphasise my regret for you. Please do not include others especially myself in your totally inaccurate and unproven statement which has no foundation and is very misleading with no place on a forum like this for anybody who may wish to further their insight into this subject.

 

[AlohaBird]

It bears pointing out again that there are a lot of different medications which each effect different people in different ways. I know some people who think Tegretol is a godsend. For me it was torture, way worse than the seizures themselves. That med really did, "make me stupid".
Then, with a change to Phenobarbitol, I went back for an M.A. and a PhD and did just fine.
So even if one med in one instance with one person causes problems, that doesn't need to be the end of the road. Get a good neurologist and tinker until you find something that works with your unique brain chemistry.

 

[Nakamova]

:hj:

Okay, I think we are all on the same page as far as meds are concerned. (Summary: meds can cause side effects; however, not all people, not all meds, not all the time. Proceed with caution, get informed. Be sure to research any medication to be aware of possible side effects and interactions).

Let's get back to the original thread question about possible non-medication side effects of epilepsy.

 

[SlimBlue]

Well said. Lets get back with an oldy but a goody: loss of independence.

Always having to have your support net somewhere near, always having to scrounge lifts- which takes away the joi de vivre of just deciding to go somewhere, randomly, for the hell of it- as trips always have to be planned in advance, and double checked at the last minute to see if it's still available etc.

I don't mind not being able to drive so much, what has an affect on me is worrying that I'm just 'using' my friends- and that hurts, especially given the huge amount of love and support they give me already

 

[EpiInternational]

By the way: The people who are struggling with fatigue and/or memory issues might consider undergoing a Polysomnography.

As the link between epilepsy and sleep is so evident in my case (all of my seizures happened in the first 30 minutes after waking up from a short night) I always suspected that the whole fatigue/memory-situation could have a relation to that as well, which is why I participated in a Polysomnography test.

And while a mild form of obstructive sleep apnea was diagnosed the doctor in charge ruled out any connection between that, my epilepsy and my symptoms. (Im sceptical about his opinion for various reasons, but that is not really relevant to this topic)

However, there seems to be a rather high percentage of epilepsy patients who also suffer from obstructive sleep apnea, which might be causing (or increasing the effect of) fatigue or memory issues. For anybody interested, this was an interesting read:

http ://columbiasleep.org/researchdocs/Epilepsy%20and%20sleep%20disturbance.pdf

Im neither a doctor nor an expert on this subject, so this is less of an advice from me but more of a hint. None of my Neurologists so far have mentioned that i should have my sleep checked by someone, although apparently there are reasons to do it.

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

Unique and frustrating, at least for me. We can only hope for science to become even better at identifying the root of the problem.

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.

:agree:

 

[SlimBlue]

And while a mild form of obstructive sleep apnea was diagnosed the doctor in charge ruled out any connection between that, my epilepsy and my symptoms. (Im sceptical about his opinion for various reasons, but that is not really relevant to this topic)

I would also be very sceptical, and would at least ask for a second opinion..

You might want to have a search on here for some of the apnea threads as there definitely seems to be a big correlation, and as usual with all things E, judging by the amount of people posting in them, it seems to be a slightly bigger correlation than shown by various studies..

Here's one of many to start you off..

The search box.

 

[Belinda5000]

I talked with my neuro about cognitive functions , and I ask him if he thought mine were affected and he said I remembered things he didn't remember. IOnce I came off Dilantin that affected my memory and I was on it36 years, I had know problem with my memory it improved 90%.

I've been on Tegretol since 1975 when it came out. I'm lucky to have a neuro who cares.I have a good memory. I just can't drive and I take public transit.:twocents::e:

 

[masterjen]

For me the biggest side effect of this affliction has been the loss of self-confidence - in part due how others started to treat me, but also due to how I felt about myself. I still live independently but I guess you could say I am less adventurous and at times overly cautious. I'm not as bad as I was in the first couple of years I was diagnosed, and I think I'm continuing to slowly get back to my old self.

 

[George__]

- Fatigue
- Lack of self confidence
- Drivers license woes
- Commercial certification woes
- Memory issues (probably related to the medication)
- Unstable life style (medication isn't 100% - break through seizures could happen anywhere anytime!!!)

I'm pretty sure epilepsy isn't my only issue since I've always been weird / odd .

I call BS to anyone who claims to have zero side effects from their medication! I think medication side effects do make you "dumber"

 

[Nakamova]

I call BS to anyone who claims to have zero side effects from their medication! I think medication side effects do make you "dumber"

Hey George -- we're off that topic now. Feel free to start a different thread discussing it though.

 

[SlimBlue]

 

[Belinda5000]

I disagree with you on this one here except for Dilantin that affected all through school.It depends on the drug your on because I've had problems with one drug dragging me down.:twocents::soap::e:

 

[valeriedl]

My memory is very bad. I had my first seizure when I was 26 and forgot over 10 years of things that happened before then. I knew I graduated high school but I didn't remember I did it. There were so many other things in those 10 years that are gone forever.

When I was in the hospital after having my first seizure I found out that I had a tattoo. I was so excited because I didn't even known I'd gotten it! There was a guy who would come to visit me every day and when he would leave he'd give me a kiss and tell me he loved me. I asked my grandma who he was and it turned out that it was the guy I was dating - I had no clue!

It took me a few years to remember that president Regan had died. Any time something would come on tv about him I'd ask my husband what Regan was doing. He'd just look at me and say "He died, don't you remember watching his funeral with me?" I did it so much that my husband thought I was just kept asking him to make him mad but I honestly didn't remember he was dead. It's finally stuck up there now that Regan is dead.

I may ask the same person the same questions every day. A good bit of times they don't realize that I honestly don't remember asking them what ever it was the first time let alone the other 20 times too.

My cousin is getting married soon and the family was talking about the seating arrangements for the wedding. I'd asked where my cousins dad, my aunt's ex-husband, was going to sit. The whole family gave me this goofy look and my and told me that he'd died years ago so he wasn't going to be sitting anywhere.

I try to look at my memory loss with a little bit of humor. My friends like to play games with me too. One of them asked if I remembered the time when we stole a car and drove it to NY? I didn't remember doing it, which didn't mean anything, but couldn't believe that we'd done anything like that. She just started laughing like crazy when she knew that I'd believed her.

I find if it's something funny I tend to remember it. My husband always gets mad because I can remember the time he told me that he thought he saw a UFO. When I can't remember something important he always says "You cant remember what ever it is but you won't forget about that stupid UFO!" When he lost his job I told him to see if Area 51 was hiring, maybe he could get a job there?

If it's something that I really liked I tend to remember it too. I had a job I loved and I'm almost positive that I could probably go back there I'd be able to work again just like I did before after one week. I guess I didn't like that boyfriend too much though since I didn't remember a thing about him?

I like to joke about how bad my memory is too. I always say that there is no such thing as a re-peat tv show for me because I don't remember watching it the first time. If I can't remember someone's name then I've got a good excuse for it too. If you need someone to tell a secret too go ahead and tell me because there's a pretty good chance that I won't remember it so I won't be telling anyone else!

I don't let my epilepsy get me down either. I still like to go out and talk to people. I'm usually the one up and dancing at parties. I always say - Laugh don't cry, it feels better!