should i start meds for epilepsy
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elipepsy runs in my family, my older sister particularly has a bad case of epilepsy since she was 11 now 22, where her triggers are not understood still, and medication doesnt seem to be effective enough. Me however, it appears my triggers are easier to work out. It is often related to alcohol and dehydration and sometimes lack of sleep. I can take recautions on a night out to ensure i dont seizure the next day but sometimes it doesnt always work. In addition i get these somewhat mockery seizures where it lasts only a few seconds but its unconscious and extreme body spasms. I become aware of theseof course as they are only a few seconds and they scare and panic me. Especially as they can affect my day to day life causing me to drop things, make a mess and break things, as well as an inpending fear i will fully seizure. people often down grade my epilepsy and say its my fault because my triggers can be known and somewhat controlled, and they put me down because of it. Ive only had my epilepsy for 2 years roughly, living in brighton i had an active clubbing lifestyle with all my friends, but now it affects my social life with my friends, and drinking, and just wanting to be normal the way i was before or like everyone else. Ive considered taking medication, but is there even a medication that will allow me to drink freely like everyone else my age, to not recieve seizures? I dont want to take medication daily, i just want to be normal like everyone else again and not fear my own body.
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SteV3 Lost.
Posted
I am in a very similar situation to you, but a lot older I know what it is like to have Epilepsy, I've been hsopitalized many times because of it. And, again like yourself I have Epilepsy running on my dads side of the family (well, when he was around, he passed away sadly in 2008). I do not know what medications you are on since you did not specify them. I am on 1,800mg of Epilim a day, Clonazepam and Artane - doses are quite high but I know many of my triggers, and your lifestyle I could not lead at all. I did once have 1/2 a glass of wine which knocked me out for many hours, this was a reaction to the medication, which is why I cannot drink alcohol in any form, even though it may be tempting.
You say you go clubbing, that in it self would trigger Epileptics that are triggered by light, this even happens to me, unless I can get outside very quickly. Normal disco type lighting is fine because of the frequency being low, but LED laser lighting is another matter since this is a much higher frequency, with me this triggers an instant nosebleed followed by an Epileptic seizure.
One thing you have not mentioned is are all your seizures from Epilepsy? I have Epilepsy like yourself, but I also have Functional Episodes - these are very similar to epileptic but are not in the same field. You would need to chat to your doctor about these, or if they do not know then ask to be referred to a Neurologist Consultant. If you need more information let me know. Basically, you need to build your lifestyle around your health, for me that is easy I'm not young anymore eventhough I was 22-23 when I started having them. I can point you to websites that offer information on Functional Episodes so you can read up on them, and to me it does sound like you have both.
Regards,
Les.
Lost. SteV3
Posted
Luckily lights and such do not trigger seizures for me, which i am grateful for because i loved my clubbing lifestyle. I sorry your epilepsy is so extreme and have so many triggers
I cant imagine what you, my sister and others like you both go through!
Considering epilepsy runs in my family i guess my family assumed all my seizures are epileptic, but i also had an EEG (i think it was) done which apparently showed certain electrical currents which supported epilepsy theory. However, i dont know what functional seizures are?and what other fields there are? what are the functional episodes and the different fields?
But i suppose i didnt write my question very clear, but given what ive told about my situation, should i take medication for my epilepsy/seizures, when im told i can just stop drinking instead? Or should i take medication so i can drink and be fine like normal? :s
i want to go travelling to america and australia etc etc but im afriad needing a repeat prescriptions will affect my chances getting a visa, plus i dont even know if the medication will stop seizures after drinking even still? ahhh its so confusing
SteV3 Lost.
Posted
I have grown to live with it, it is a case of having to, the trouble with me is I have many disorders, Epilepsy is to me is minor, believe me, the types of Epilepsy differ, but so can the seizures - it's the seizures that can give a false/positive seizure. You said you had an EEG, if this is done near a seizure it will give the correct results. But an EEG, while in a Functional Episode will not show any electrical energy whatsoever - the trouble is you need the EEG done when the seizure occurs, the chances of that is nearly impossible.
I'll try and explain in simple terms what Function Episodes are, since there is no articles on this site about them, and the main Consultant Neurologist Jon Stone lives in Scotland, but he is well known in his fields of Neurology than most. Neurologists in this country normally contact him or visit his website which lists around 28 different types of seizures.
Now, if you suffer from Panic Attacks, Anxiety, depression, etc these will certainly trigger Functional Episodes, these seizures range from you know you are in a seizure but cannot do anything about it, muscles spasms are the same as Epilepsy, but you can have these with eyes open and hear whats going on, but you cannot in anyway communicate with anyone.
As for medications, that would be a problem if travelling abroad when in the UK your prescriptions are exempt from payment because you suffer an ongoing recognized disorder, regardless of if you are working (You have a MedEX card which lasts for 5 years). I'm on many medications a day, and total around 40+ a day tablets and have 5 injections of BOTOX every 10 weeks in hospital. Imagine paying for that lot in the USA, even Botox is around $600 a shot!
What I'll do is privately message you the website of Dr Jon Stone, so can read up yourself.
Regards,
Les.
Lost. SteV3
Posted
Thank you again for your help