Really Lost, too complicated case, plz help

Georgio

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Hi, My name is George now 29 years old, I was diagnosed with Juvenile Myclonic Epilepsy when I was 10 years old. At that time I used to have absence seizures that would last for up to 6 seconds. It got better with Epilim but did not fully disappear. When I was about 23 years old I started having another type of Seizures which is being unable to concentrate for a very long time, I become clumsy, I would drop things which I am holding, and mostly unable to have a normal conversation without sounding very drunk or sleepy. It gets worse if I am having a hangover. it doesn't happen everyday but it happens too much and it lasts for more than 8 hours sometimes.
All my life I used to have such bad marks in school and I never done well at school, university or even Work. I keep getting distracted way too often that I can never achieve something. I still managed to graduate from university with computer science degree that took me 5 years instead of 3, and then did my masters degree which took me 2 years instead of one, tried working but I was fired since I was too slow and couldn't work efficiently so I tried getting back to studying and now first year PhD student and I am having problems since everything I do takes my way longer than usual even reading an article is a burden as I keep getting distracted and I am terrible (really terrible) in organizing myself.
Ever since I was a child and even now I am always described as a hyperactive person with limitless energy. When I was 22 I was diagnosed with ADHD and I took the medication Straterra for about a month, then I just stopped taking it as I didn't feel any progress and felt that I was taking too many medications then one doctor said I should stop it because ADHD is not a real thing as he said.
When I was 23 I was diagnosed with depression and Kept taking Sertraline for about 3 years then stopped it, it made me a better person in the context of depression.
My case is very complicated and t is a mixture of Epilepsy, depression and ADHD I was referred by my GP to an epilepsy clinic in Northampton but my appointment is in two months and I am afraid I can't wait that long with my regular seizures.
I don't even know the name of the seizures that I have which lasts for 8 hours approximately. I don't trust any sort of medication at the moment and don't know what to do, is it epilepsy, adhd, depression or all of them.
Please help me.
Thank you very much for reading this message and for providing any sort of a help.
 

Topcat

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Georgio- Epilepsy can make people very depressed. That's a normal part of it. You are not the only one to go through that believe me!
You will find out more when you see the neurologist. Just have faith and you will get through this.
Send me a private message if you want.
 

Porkette

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Hi Georgio,

Welcome to CWE. Just like you I started having absence seizures when I was 10 yrs. old and by the age of 12 I started having complex partial seizures also. I've had epilepsy for 44 yrs. now. Take my word depression is all part of epilepsy not to mention how the seizure meds can sometimes make a person feel depressed. It has been proven that ADHD can sometimes lead into epilepsy for some people. I work in public school in Special Education and I have worked with many students that are ADHD and it is harder for them to concentrate unless they are in a room where nothing is going on.
I think it's great that you got your PhD and I am proud of you keep up the good work.
I also have had a hard time finding the correct seizure med so my Dr. did a DNA test on me and found out I was drug resistant to all seizure meds out on the market now. I hope I'm wrong but since your seizure last for 8 hrs. you may be having status seizures which can be very hard to control, I was having absence status seizures when my Dr. put me on Neurontin but after I went off the drug the status seizures stopped. I know it may sound crazy but start taking vitamin B12 1000 mcg. once a day this has really cut back on my seizures a lot. Also ask the Dr. you are going to see to do a DNA test on you by doing this test they can see the amount of enzymes in your liver along with your body chemistry and with that they can match that up to the best seizure med with the least side effect. I wish you only the best and May God Bless You!

Sue
 

seagull

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Try hard get referral to Kings collage demark hill.may take some pushing but it's your right go there.It the top totty of e and things around it they have hugh e unit.Dont take the drivel about out of area it tripe they take people from all overt country.You will get an answer may not be what you want they pull no punishes but you will be tried on this generation drugs.
doc go there to learn about e
The lack of concentration many people clever as you have these problems but you obviosly
Must have better than you think people doing PhD. Concentrate or not got degrees..people well above normal IQ do get distracted.and most of time it just one facet. Of human condition
Best of luck
 

acshuman

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Your Problems

George,
I noticed a word in you description that made me think of something that maybe you should consider.
You said that your seizures seem to get worse when you are 'having a hangover'. The consumption of alcohol can be some type of 'trigger' for SOME people who have E, but not all. It still is something that you should consider. Maybe NOT drinking alcohol could help you out. It can't hurt to check it out for yourself!
Sue said something that may also be helpful when she told you about vitamin B.
Also, Welcome to CWE and have a GOOD EASTER!

ACsHuman
 
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Georgio

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Thanks all for your very nice and helpful replies, I must add one more thing, which is that when I really want to do something whatever it is, I can always manage to do it. When I felt that I have an Idea for a PhD research I managed to do a very good job putting it into words and I am very good at finding solution, strategic thinking and problem analysis. However my only problem that whatever I do takes much longer than others but in many times more efficiently. So I am the perfect person to solve one big problem/task, but at the same time I am the worst person to do 3 small tasks in the same time.

Thanks all for the points you raised, I am considering all of them to put a until I see the specialist at the neurology clinic.
Thanks

George
 

acshuman

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Dealing With Your Situation

George,
You say that you can figure things out, but it might take you a little longer to do that. The biggest thing that you have to realize is that many people who have E have to deal with things their entire lives that "normal' people never face. If you are willing to try and figure out a solution to any problem you may have, you are using your mind to figure these things out and NOT letting your emotions lead you down a path of negative thinking.
If you get a diagnosis form the doctor that you are going to see, the best thing that you can do for yourself is to accept that diagnosis and then realize that YOU are in control of yourself, NOT what may be a negative diagnosis!
Keep an open mind and you with be able to deal with any problems you may face much more easily!:twocents:

ACsHuman
 

Howll

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What's to say this loss of concentration/distraction is a seizure at all? It could well be a variety of things, as you said you have ADHD so that's a big factor, depression is another thing that can make you feel like that and just being generally overworked.

I for one have always been a clumsy oaf, who's easily distracted, always feel like I need to be doing something else than what I'm already doing and I do slur and struggle to get my words out but all of those things have been a factor in my life way before I ever had a seizure. I was diagnosed with dyspraxia when I was a kid, and did have a speech impediment due to the roof of my mouth being high so they are both things that are likely to be the cause of my problems. It's not always E, it's always good to get any symptoms checked out if you have E, but the thing to remember is that many people have symptoms such as yours every day and don't have E, sometimes it's just the way we are. My partner always sounds a bit drunk when he talks and always has, he could also easily trip over his own shadow, there's nothing medically wrong with him but that's just him.
 
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Georgio

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I think I need to elaborate about the seizures I experience.

Mostly they happen when I wake up in an unusual time either too early or too late than whatever time I am used to wake up at. They tend to happen more often if I have been drinking the night before. that's why I take lots of care controlling my alcohol consumption. When I get the seizure I become very hard to concentrate on anything and I keep getting lost. For example if I decide to go get dressed I go to the room and then I suddenly forget why did I go there. if I want to bring my keys before leaving the house I might hold the keys in my hand and not knowing what to do with them for a minute. It might take me 3 minutes to lock the door of the house when leaving just because I will be looking at the door not knowing what to do with it. If I am having a conversation I keep getting severe absence seizures that I keep forgetting what I am saying every 30 seconds. I find it very hard to remember what I was saying or to find the words to say it. Sometimes it is accompanied by regular jerks in different parts of my body which are sometimes scary to other people I am talking to. The most severe seizure I had happened once when I was travelling to France, I had to wake up very early and very quickly after a night out when I was drinking a lot. I woke up and barely made it to the train station and then when I reached the train station I forgot why am I at the train station in the first place. it took me 30 minutes to remember that I am there because I am travelling to another city and I barely made it to the train at time. I kept looking around for 30 minutes trying to figure out why am I at the train station I kept looking around and on the screen reading then I read the name of the city I am going to so I remembered why am I there.

That was literally scary experience. and that's when I decided never to drink alcohol whenever I need to wake up early.

It takes me up to 6-8 hours to become normal again, most of the times I go back to sleep to recover a little bit faster. But in many cases I would have something to do and I would be unable to get back to sleep.

I hope this helps, if you guys know what this type of seizures would be please (Scientific name) let me know. Thank you.
 

Georgio

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Thank you very much for the detailed response, can I please ask you to read the elaborated description of my seizure which I have just added to the conversation and tell me if you have ever encountered any similar experience/seizures >

Thanks a lot.
George
 

Cint

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Georgio,

If you're having ANY type of seizures, STOP consuming alcohol! This can only make them worse. Seizures exacerbate seizures, so on and on it goes. The kindling effect!! ADD/ADHD does go along with some types of seizures. Perhaps simple partial seizures(aura) or absensce seizures.

Check this website out for more info:

http://www.epilepsy.com/learn/types-...sence-seizures
http://www.epilepsy.com/learn/types-...rtial-seizures

Georgio said:
I woke up and barely made it to the train station and then when I reached the train station I forgot why am I at the train station in the first place. it took me 30 minutes to remember that I am there because I am travelling to another city and I barely made it to the train at time. I kept looking around for 30 minutes trying to figure out why am I at the train station I kept looking around and on the screen reading then I read the name of the city I am going to so I remembered why am I there.

That was literally scary experience. and that's when I decided never to drink alcohol whenever I need to wake up early.
Another link to check out:

http://www.epilepsy.com/learn/impact...ing-and-memory

ALCHOHOL and SEIZURES DO NOT MIX!!
 

Nakamova

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Hi Giorgio --

One possibility: Memory loss and confusion can be features of the post-seizure stage, rather than the seizure itself. And things like fatigue and dehydration (which can result from alcohol consumption) can prolong the post-seizure "hangover". See https://en.wikipedia.org/wiki/Postictal_state for more information about post-ictal (post-seizure) symptoms.

best,
Nakamova
 

gymrat827

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I think I need to elaborate about the seizures I experience.

Mostly they happen when I wake up in an unusual time either too early or too late than whatever time I am used to wake up at. They tend to happen more often if I have been drinking the night before. that's why I take lots of care controlling my alcohol consumption. When I get the seizure I become very hard to concentrate on anything and I keep getting lost. For example if I decide to go get dressed I go to the room and then I suddenly forget why did I go there. if I want to bring my keys before leaving the house I might hold the keys in my hand and not knowing what to do with them for a minute. It might take me 3 minutes to lock the door of the house when leaving just because I will be looking at the door not knowing what to do with it. If I am having a conversation I keep getting severe absence seizures that I keep forgetting what I am saying every 30 seconds. I find it very hard to remember what I was saying or to find the words to say it. Sometimes it is accompanied by regular jerks in different parts of my body which are sometimes scary to other people I am talking to. The most severe seizure I had happened once when I was travelling to France, I had to wake up very early and very quickly after a night out when I was drinking a lot. I woke up and barely made it to the train station and then when I reached the train station I forgot why am I at the train station in the first place. it took me 30 minutes to remember that I am there because I am travelling to another city and I barely made it to the train at time. I kept looking around for 30 minutes trying to figure out why am I at the train station I kept looking around and on the screen reading then I read the name of the city I am going to so I remembered why am I there.

That was literally scary experience. and that's when I decided never to drink alcohol whenever I need to wake up early.

It takes me up to 6-8 hours to become normal again, most of the times I go back to sleep to recover a little bit faster. But in many cases I would have something to do and I would be unable to get back to sleep.

I hope this helps, if you guys know what this type of seizures would be please (Scientific name) let me know. Thank you.
you need to ease up on substance abuse buddy.

Unless your only having a beer or 2, its going to have bad effects in the long run.

I dont like listening to this either, i am one that will do as i plesae, but ive gotten hurt, found myself in odd, interesting situations like yourself and have never benefitted from boz, smoking weed or anything along those lines.

So peer to peer, ease it up.
 

valeriedl

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Alcohol is a BIG seizure trigger for me. I went to a picnic a few years ago and there were two larger coolers with drinks in them. One was iced tea and the other was a fruit punch. After drinking about 8 glasses of the fruit punch I found out that it was an alcohol fruit punch. I wound up having seizures for the next two days.

The only times I really drink are on holidays. Holidays like Christmas, New Years Eve and ones like that. If I do drink it's only one or two small drinks, nothing strong. If you think that alcohol could be causing seizures then you need to stop drinking it all together.

Lack of sleep can be a big seizure trigger for people too, it is for me. I need to get a full nights sleep and I usually take a nap in the afternoon. If I don't get one, the other or both I'm almost guaranteed to have a seizure that day or the next.

I was diagnosed with epilepsy when I was 27, 13 years ago. It took a good many years for the neuro to figure out which meds and dosages would do best. The meds I'm on now have decreased and made my seizures not as bad but I am still having them.

It sounds like you could possibly be having simple partial seizures. You stay awake (you don't black out) and are aware what's going on but you get very confused during them. I had one in the shower this morning and I couldn't figure out if I needed to put shampoo in my hair (I already had it in there), wash my body or shave my legs. I know I should have gotten out and sat down til I felt better but I didn't. It lasted for a few minutes and then I realized what I needed to do.

A few years ago I was having horrible large jerks in all parts of my body and it would really freak people out when they happened. I was under a lot of stress at the time. After about a month they started to fade away then stop. I'll still have small jerks every so often. I don't think anyone really notices them but me. I don't know if it could be a side effect from one of my meds or just from having epilepsy?

Welcome to CWE!
 
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