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Newly Diagnosed - Mainly Worried About Medicine Side Effects
Fri, 04/27/2018 - 20:20Topic: New to Epilepsy.com
Hi all,
New here, based in the UK (I'm English), was diagnosed on Wednesday by a neurologist, after 4 seizures (minimum) in 2 months, all in my sleep, being taken to hospital twice (including once evacuated off a plane). The reason for this intro is to say, I'm still kind of in shock, especially as someone who has never done drugs, very moderate drinker, etc. So I never really expected at the age of 31, to be having seizures and being medicated for it.
In any case, they put me on levetiracetam (forgive my spelling) known to most of you as keppra, first 250mg to go up to 500mg. I do feel quite strange already, but am determined to stick it out, only worrying about any physical side effects. I did post in the relevant thread on this in the correct sub-forum, but my post is still awaiting moderation. So, what worries me, is I see all kinds of people claiming to be losing their hair (yes believe it or not, my main worry is going bald, I know that's vain!), and to a lesser extent skin problems. I don't believe everything I read on the internet, but neither do I think these people are engaged in some kind of conspiracy, so I guess there is some truth to it. But often what is missing in these cases is a rational discussion, of people explaining their wider health, what other medicine they are taking, and a serious look at the statistics of what % of people are affected and in what way (I have seen this link that was posted, but the jargon is not clear to me, what does "post-marketing" reports mean, and there is no number posted, so it could be 0.04% or 40% of people losing their hair for all the reader knows: https://reference.medscape.com/drug/keppra-spritam-levetiracetam-343013#4).
So yes please do forgive the rant, all, but I am a little bit frustrated by this, I am sure many will identify.
Having said that, though, I also wanted to say that this forum is a great resource and it is so important sometimes just to read other people with similar experiences. So thank you to all the volunteers who keep it going.
W
Comments
Hi everyone, Thinning of hair
Submitted by epihelp on Mon, 2018-04-30 - 10:40
Hi everyone, Thinning of hair is not a commonly reported side effect of keppra that I know of. Suggest you look specific to the package insert of this and for any drug.Re the new notice of lamictal reaction - this is also very rare but one that needs watching. We are updating our info on this today.
Hi William, No idea if you'll
Submitted by figs on Tue, 2018-05-08 - 00:45
Hi William, No idea if you'll see this because this post if over a week old now but I'll write it in case you do. Antiepileptic meds (AEDs)- and epilepsy in general- boil down to this: it is COMPLETELY INDIVIDUAL. In other words, no 2 of us are going to have exactly the same seizure experience, or the same reaction/response to certain medications and doses. It's trial and error and none of us can predict what side effects and to what degree we'll experience them until we try the drug. It's a simple as that. What the studies and textbooks say are GUIDELINES only.I'm also going to add that Keppra certainly does not have a "good reputation", certainly not in the UK. Currently it's drug dejour in a lot of countries, meaning for whatever reason it's the first drug being prescribed to newly diagnosed people. Prior to that it was lamotrigine (many would argue that drug is actually a better one to start on); drugs go in and out of favour. Some people have good responses to it, others have very severe side effects, others don't have much luck with it. From my decades of experience with AEDs I'm 99% certain keppra would cause me a very dangerous side effect so I refuse to even try it.There's also a big issue with neurologists downplaying even the general effects of taking AEDs when they're first prescribed. That's been going on forever. If they tell you most people don't have any side effects it's a load of BS and then you have ground to ask them to provide the scientific data to back up his claims which he won't be able to do, because in 30 years I've never met anyone on AEDs who hasn't had side effects of some sort. These are heavy duty brain drugs, and to start with you're going to feel pretty awful until you adapt to them. Most of us adjust in time but we're still drugged.
Thanks to you both for your
Submitted by WilliamD on Sat, 2018-04-28 - 17:15
Thanks to you both for your input. It is reassuring to know keppra has a good reputation because there are so many negative things posted online and it can be scary, especially as right now it's got me drowsy and a bit down (which is not usual for me at all).