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Newly Diagnosed - Mainly Worried About Medicine Side Effects

Fri, 04/27/2018 - 20:20
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

Amy Jo does her research and

Submitted by just_joe on Sat, 2018-04-28 - 15:25
Amy Jo does her research and is very good at it. Like she said side effects are compiled from the studies done across the country. Thy are even done on the UK. My neurologists office is one of those that do the studies. I have been in some of those studies. When testing th new drug (*medication) you are required to note things and one of those things is anything that happens on the day that was different. You have an upset stomach it is noted. Anything. With side effects and percentages it can be hard to certain percentages. With most medications the range can be from 0 to 12% and with some it can get a little higher. For most side effects the percentages are 5+8% of getting one of them. I have only used 20-25 different medications or combinations of medications and I haven't had any side effects. Generally if you get a side effect it will go away after your body  gets used to the medication and the therapeutic levels the neurologist wants in your system. As for Keppra it is the best seizure medication I have taken in the 50+ years I have had epilepsy. It takes some time for the dosage to get to the levels wanted and then give it a month to see that the seizures have stopped.  Adjustments can be made to the dosage and then the times starts againAs for your shock Epilepsy does not discriminate. Healthy. rich, poor, old or young it makes no difference. Kind of like heart conditions or cancer. ANYBODY can get it

Amy Jo does her research and

Submitted by just_joe on Sat, 2018-04-28 - 15:33
Amy Jo does her research and is very good at it. Like she said side effects are compiled from the studies done across the country. Thy are even done on the UK. My neurologists office is one of those that do the studies. I have been in some of those studies. When testing th new drug (*medication) you are required to note things and one of those things is anything that happens on the day that was different. You have an upset stomach it is noted. Anything. With side effects and percentages it can be hard to certain percentages. With most medications the range can be from 0 to 12% and with some it can get a little higher. For most side effects the percentages are 5+8% of getting one of them. I have only used 20-25 different medications or combinations of medications and I haven't had any side effects. Generally if you get a side effect it will go away after your body  gets used to the medication and the therapeutic levels the neurologist wants in your system. As for Keppra it is the best seizure medication I have taken in the 50+ years I have had epilepsy. It takes some time for the dosage to get to the levels wanted and then give it a month to see that the seizures have stopped.  Adjustments can be made to the dosage and then the times starts againAs for your shock Epilepsy does not discriminate. Healthy. rich, poor, old or young it makes no difference. Kind of like heart conditions or cancer. ANYBODY can get it

very moderate drinker  <<<< I

Submitted by just_joe on Sat, 2018-04-28 - 15:33
very moderate drinker  <<<< I have had neurologists say NO ALCOHOL. But then I have had epileptologists say a beer or drink now and then will not hurt. It does lower the therapeutic levels but being sick wit the flu or a cold lowers them too. Just watch the timing of your drink and keep the drinks to a drink every 4-6 hours or a couple of beers in a 4 hour period. Also know that any and all medications have side effect. That also includes over the counter medications. Make sure all of your doctors know all the meds you take including over the counter meds. I say that because one medication can counter another

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