Help please :(

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Hi guys, allow me to introduce myself. I am 36 year old Male living in Singapore. Ive been feeling "weird" ever since I was a kid until recently... well heres the story, hopefully someone can tell me what i have. Your feedback is greatly appreciated.

When I was little, say..about 4 or 5, I remember always falling backwards and hitting the back of my head. Although most times, Id just get up and continue playing or doing whatever I was doing, there was once where I remember waking up on a bed, a doc and a nurse standing next to me, with little wires stuck all over my head. The part where the wires connect to my head felt really cold. I wanted to get out of there so I was struggling a bit but the doctor said, if i let them do what they had to, Id become Spiderman when I grow up, so I let them continue their work.

I believe soon after that, i started getting "weird episodes". My mom said I have Fits but refused to talk about it. I remember clearly, there were a few occasions where Id be doing something like walking or running and then Id just suddenly get "attacked". Such an attack would leave me starring blankly into air, and according to my aunts and mom, id not respond to their calling, Id just stand there motionless, eyes open, fingers moving a little. I think once or twice I even peed in my pants. I remember when i was in the "zone" or when im in the midst of having one of these episodes, I can hear people calling me, or can hear things going on around me. I cannot however, respond or remember what I see. When I recover, it feels like i was in a dream or a third dimension.

These episodes stayed with me till when I became a young adult. I remember I was driving once coming to a halt at the red lights. I could feel myself getting "attacked". I tried to quickly pull over but it was too late. I remember stepping on the brakes and that was it. When I woke up, I was handing my license over to this guy whose car was in front of me. I realize I had hit him lightly but I do not remember any of that happening. Weird thing is that I could hand him my license and speak to him even tho I was zoned out.

As I mentioned before, as a young adult, I can tell and will know when I am about to get attacked. Usually I am more prone to getting attacked after over training or over exercising, or if I had very little sleep the night before. Moments before the episode, I will get a very strange strange strange feeling. Its like the feeling of Dejavu multiplied by 1000 and I cannot focus on one point for too long. Id have to quickly look around. I started timing these episodes. Id get them sometimes once in 3 months, or maybe even 6 months. One of these episodes lasts about 1 to 2 minutes before I regain consciousness. After regaining consciousness, I feel very very disorientated and tired. There was once when I was only 5mins away from home when I got attacked. After regaining consciousness I couldn't find my way home till half hour later.

I saw a doc and was referred to a brain specialist. They made me lie on a bed with white flickering light above my eyes. I laid there for a good 15 to 30 minutes I think, and over a few sessions but nothing. Doc said I was perfectly normal.

2 Years ago, I stopped getting these episodes. However a new feeling started happening. I remember this particular day, Id get symptoms similar to those old episodes, like dejavu etc and then i get "HIT". But this time, I can actually see myself getting hit and entering that third dimension. The whole process would last only a split second. It feels like a small electric shock and I get in and out of the zone very quickly. Weird thing is, there's this distinct smell that i remember clearly. Its a stench that makes my hair stand. Throughout that day, I believe I went through it this 25 times. It felt REALLY REALLY WEIRD cos I have never had such a feeling before. The stench, the hair standing, the electric shock was all new to me. I would also feel VERY VERY sleepy after each shock. It went away after that day but came back every few weeks. Each time it came back, Id get 2 or 3 episodes a day. Recently its seasonal. For example I was free from it for the last 2 months. Today, I got hit 6 times. Its really not a good feeling after getting hit. Imagine the feeling of (you know there's something you have to do, but u cant remember what) multiplied by 1000. Or the feeling of (you did something really really wrong and bad) multiplied by 1000. Another feeling I experience is the same depressing kind of feeling when something bad has happened to something or someone close to you. It feels like someone close to me has died and id just go on feeling this way for the rest of the day or week.I cannot really describe exactly what i feel so above is to the best of my descriptive talent which i am not even sure if anyone can understand what i am typing or describing. I sincerely apologize for the long post but hopefully someone can shed some light to what I have. I truly appreciate any comments and I thank you from the bottom of my heart.
 
Hi sideeeways, welcome to CWE!

What you describe seems to be several different kinds of seizure activity. Given that you had an EEG test when you were 4 or 5 (that's when the little wires were stuck to your head), you may have been having seizure symptoms even as an infant, before you can fully remember them.

The newest symptoms you describe sound like Simple Partial Seizures. More info here: http://en.wikipedia.org/wiki/Simple_partial_seizure and here: http://www.epilepsy.com/EPILEPSY/seizure_simplepartial

These kinds of seizures don't involve loss of consciousness, but they do involve odd sensations -- phantom smells or sounds, feelings of deja vu or fear or nausea, the "electric shock" feeling, etc.

I recommend that you get a referral to a neurologist, and present them with your history of symptoms. Try keeping a detailed journal of your symptoms -- it can be useful to show the neurologist, and it may also help you identify any patterns or triggers to your seizures. Triggers can be things like fatigue, metabolic issues (dehydration, low blood sugar, nutritional deficiencies), food sensitivities (caffeine, gluten, aspartame, MSG), general health issues (infection, illness, injury), environmental stressors (flashing lights, temperature changes, and emotional stress.

Best,
Nakamova
 
Wow, what a story. I'm new here as well, but what you describe in the end of your post sounds so familiar to me, and I suffer from simple partial seizures. I hope you get some answers soon. If they are seizures, its intersting to hear you've lived without medication for them. Keep us informed if you do go to a doctor. Good luck and thanks so much for sharing. :)
 
Hi Nakamova! thank you for your reply. I do keep a journal. I write down the frequency of attacks, and the time they take place. Previously when I was still having the old episodes, I believe fatigue and flashing lights play a huge part in triggering it. However, with the new short ones(Simple Partial), I cant seem to figure out what triggers it. It seems really random. But I will look into it more, thank you for all your advice, I really do appreciate it. God bless you :)
 
Hi Julie, its comforting to know I am not the only one having this. How long have you had this condition for and what caused it would you know? Are you on any medication and does it help? Thank you for your reply and sharing as well. People on this forum are great! I hope u recover soon. Thank you again for your reply :)
 
I started a year ago after I hit my head in a car accident. I tried meds... but had a reaction so searching for new doctor and new remedies right now. I'm in the learning stage. The diagnosis of seizures is new just this past month. Prior to that I didn't realize they were seizures.
 
sorry to hear that, hows the search going? do keep us updated ok? really hope u get better soon.
as for me, ive lived with this for decades, never under any medication. Not too sure if it will get worse or better..fingers crossed.
 
sideeeways

That is some story and a bit scary for you I would say, the wires were an EEG no big deal, you get so used to them, I did as a child.The part where you lost your balance and fell and staring into space I done as well, I was also stiff like a plank of timber, could hear people calling me but once it was over I remembered nothing (still remember nothing) this was the way it was described to me as I do not know for sure all I know for definite is I would take a drink of water for the thirst and then go to bed for a few hours,try no to worry (not easy and sounds stupid) just say I am going to figure this out for myself with a little help, take some of Nakamova suggestions they are good.
 
Hey Fedup, i apologise for the late reply. Just a quick update. *Sometime back in july, i woke up from a nap only to realise ive bitten the right side of my tongue and blood all over. Right side of my body was super weak. When i say weak, i mean i couldnt even lift up my right leg 5cm off the ground to wear my shorts and i couldnt raise my right arm. I quickly went to see a doc and he said i might have suffered a mild stroke(i do have slight high blood pressure). So i went on diet and thought nothing more. Was fine till oct. I woke up middle of a normal night and there were 3 ambulance staff in front of me. Obviously i was puzzled why they were there. This time there was someone else with me while i went to bed that night and from the way he described it, i did have an epilepsy attack. He said i went stiff, toes pointed, arms straightened but with an unusual twist at my wrists, eyes rolled up and my body was jerking mildly. Basically i looked like i was posessed. There was also blood all over cos i bit my tongue. I then realised it was the exact same symthoms as the episode back in july which the doc said was a mild stroke. Right side of my body was extremely weak. Got a referral to a neuro the next day. He gave me some medication for the time being. Did my MRI and EEG few days ago. Now im just waiting for my docs appt in dec to find out whats exactly wrong. What bothers me is, my right shoulder hasnt recovered from the episode i had in july. It feels like an injury from weight training. I cant lift heavy weights cos it hurts like hell. Anyone has any answers as to why id suddenly have a new form of seizure in my sleep and why is my shoulder is like that? Thanks guys appreciate it.
 
You should have your shoulder checked out by an orthopedic surgeon. It's fairly common to injure the shoulder during a tonic-clonic seizure. Yours may have subluxed (partially dislocated) and then slipped back into place, so there may be residual soreness from that. In addition, there could be a tear of the labrum (in the shoulder socket), a tear or strain in the tendons/muscles of the rotator cuff, and/or nerve damage that is causing the weakness and pain.

As for why the sudden new seizure type -- Epilepsy is unpredictable, but generally, untreated seizures can progress in frequency, duration, and kind.
 
sideeeways

Nakamova is right you should go get cheeked out by a doctor, Nakamova has good advice. I hope you have keep a record of all this.
 
Sighh i guess.. And to think my dream was to b a pilot. Cant even goto the gym now. Im on lamotrigine. Heard it causes balding and weight gain. Isit true?
 
Keep in mind that side effects are different for everyone... I gained a little weight on Lamictal -- but I had lost weight on the med I was on before. So I ended up where I had been before either med. When I first started on Lamictal, my hair was coming out. It could have been a delayed effect from the prior med, (since hair growth is cyclical) or it could have been from the Lamictal -- either way, it stopped after a few months along with the restless sleep and mild headaches. The side effects I do still have (after 4 years on Lamictal) are blurry vision, dry mouth and eyes, and mild chin acne. No cognitive side effects as far as I can tell.
 
Sideeeways, I don't really know for sure myself, but I will tell you that when I was being diagnosed, I had three different EEGs done, and two of them (30 minute EEGS) came back normal. The one that came back abnormal was a 3 hour sleep deprived EEG, which I very clearly remember having a seizure during (when they had me hyperventilate for 90 seconds). I don't know for sure, as I said, but that sort of implies to me that you can get normal EEG readings and still have epilepsy. I had another 30 minute EEG about a year ago, and that one also came back normal. But they know without a doubt I have epilepsy because of my abnormal EEG, my MRI, and my symptoms. I also have a family history of epilepsy.
 
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Hey guys! Just a quick update cos i think its impt info for anyone here taking these meds!
After seeing a neurologist somewhere in dec, i was on lamictal. After a couple of months, side effects started showing... I felt sick, dizzy, nausea..everyone around me thought i looked pale. I thought i was super unfit so i went for a run n i almost died from it. Family doc immediately did a blood test. My blood count was at 5, i believe a normal male my age shd b abt 12-15. I was admitted into A&E immediately n was under obsv for a few nights. Of cos they also gave me about 3 bags of blood. After this, the doc put me on keppra. Mann i feel like incredible hulk all the time. I felt like i could snap someones head off with a single slap. I was angry every min, mostly at myself. I got super irritated easily. I also feel depressed most of the time(being a pilot was a childhood dream didnt really help matters).
 
Besides the anger and depression in me everyday, i find myself trying so hard to pls everyone arnd me and trying to put on fake smiles. I snap easily at anyone and anything. I also fully understood why some patients have suicidal thoughts. I have no idea how deep or how far keppra will take me but at least its not giving me low blood count. Im still trying to practice anger management with keppra. Def not gona stop taking it cos i bought three months supply and with no govt subsidy, they r around 800 bucks i think. Anyone els ehave the same exp with keppra?
 
If ur on lamictal and u start having headaches n dizzyness, pls pls pls see a doc immediately.
 
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