Teporal Lobe Epilepsy

[DarrenC]

Hi, in September 1999 I suffered a gran mal seizure, had my heart stopped after 2.5 hour fit. It took around 4 minutes to start me up again, and when I was brought back round 2 days later. I was placed on Tegretol Retard/carbamazepine? these tablets are anti depressant. The first 12 months I didn't know what had happened, and the taking of the tablets seemed pointless. But after a year things started to happen (i.e) heavy mood swings, extreme panic stricken anxious thought, toward everything I was hearing & seeing. Incredible depression, the ability to socialise became a conscious burden. To much thought and fear, about the situation I would be creating with someone else.

My career as a print finish engineer was destroyed, saying I wasn't allowed to be in the same room as guillotines working. The government then wouldn't supply me with incapacity benefits, and I got a very negative response from a lot of employers, when I mentioned the word Epilepsy.

Since then my family & friends walked away from me, and left me to sort it out pretty much on my own. In 99 I was a smoker, drinker, drug taker and tea drinker. Neurology in the entire time period I have had my epilepsy, have never mentioned to me about either of these drugs, and an effect it would have on me or the tablets? but the side effects that were created, and I had to cope with 24/7 was consistent epileptic thoughts, depression, anxiety and extreme panic stricken mood swings. From 1999 to 2008 I was a panic stricken mess, suffering constant epileptic seizures. A regular coming round on underground platforms, I fell 20ft off a walk way out side my flat that was above shops in Rayners Lane. My entire left side heavily bruised, the last 2 discs in my spine lost all there fluid. But I didn't break anything because I was in a state of absence when I jumped or fell, and came round thinking I was in bed, then opening my eyes looking up at my flat front door open lying on the high st floor.

It has taken me 15 years of extreme side effects that put me to attempted suicide twice, created a 24/7 voice in my thoughts creating epilepsy to monotonous sound, emotional stress.

In 2008 I ended up in Leeds, after a cousin I hadn't heard from for a long time got in contact with me.

My mood swings lost me a place at his, no one else wanted to know and I ended up at a mental health unit at St James hospital. My 1200mg per day of tegretol received an extra daily prescription of 1.5mg of Clonazepam, an insomniac sleeping tablet to supress the side effects of the tegretol. After 6 months the fatigue from the sleeping tablets was intensifying the tegretol, and creating heavy sleep loss. Even higher nerve activity, that was over whelming my muscles ability to cope with it at that time of the day.

At the beginning of 2010 I was on my knees crying my eyes out, praying to my grandma Rosa who had passed on 2006, asking her to help me understand why I was being punished so bad. I walked down to a bridge in Leeds that crossed over a dual carriageway , to find my answers if not put myself off the bridge. As I walked down to it I bumped into 2 lads from the Church Of Jesus Christ Of Latter Day Saints. The book of Mormon. Since then I have been going to church every Sunday, and I have been Baptised and Endowed.

Over the last 5 years I have I have come to fully understand what was happening, when and why to me in regards to the Tegretol. It was stimulating my nervous system creating epilepsy through the anti depressant in the drug, but locking my muscles solid with the anti convulsive side of the tablets, which was wiping out my concentration span, and short term memory. Making it even harder to cope with the deja vu confusion from the epilepsy.

I am now a qualified personal trainer, and have moved back down south from a council flat exchange. In the early part of 2014 I started work at LA Fitness in Leeds, but 6 weeks into the work the tegretol took over from the fatigue of the work, and the serious struggle to sleep from the side effects of the tablets.

I lost my job there but I demanded a change in my tablets to relaxant? I was put on pregabalin 300mg per day. At this time in all the consultations I have had with neurology, I have never been given a straight forward answer to anything about epilepsy? nothing but defensive reactions from neurology?

I should be still on 1200mg per day of tegretol, 1.5mg of clonazepam and 300mg of pregabalin. I am now just on 300mg per day of pregabalin. The gym is the answer to Epilepsy, it is very cardio respiratory condition that is created in a lot of people between 20-40 years of age because as you get older your lungs shrink, and your heart weakens which intensifies the nerve activity, weakens the oxygen level to the brain and the muscles weaken struggling to cope with bursts of nerve energy. Alcohol, nicotine and caffeine are stimulants that will raise your nerve activity in the wrong areas of the brain causing epileptic seizures.

And with my senses now being so acute from the, 15 years of tegretol 10 folding my nervous system.

I can now understand what our Heavenly Father is saying to me through my sensory senses. And show my faith through my emotional senses. Which brings me regular blessing in my life from the Holy Spirit, who entered my life by way baptism.

[AmyBadd]

Im so sorry, it sounds like you have been through a very tough journey. I wonder if there is any scientific proof about excercise helping to relieve seizures? I had got into quite a lazy state before I had some seizures last year, but since then I have upped my physical activity. I now normally go to the gym or gym classes twice a week and dancing once a week. I've not had any seizures since. Of course, I am also on a slightly increased dose of epilim and have started taking clobazam occasionally as well.

[DarrenC in reply to AmyBadd]

Niceone, it sounds like you've crossed the bridge with your epilepsy. Your bodies natural reaction to stress is muscle tension, and as you get older if you don't service your body, then it starts to fall away. No different to a car with a weak service history, but with humanity it's to do with your heart, lungs and muscles. And epilepsy is to do with your fitness, not your mental health? it's effecting your sensory senses (i.e) sight, sound, taste, smell not your emotional senses. So they need to give up with the pathetic anti depressants that create extreme side effects, that create constant epileptic thought to the point of gran mal seizures on a regular basis. At night people suffer from epilepsy due to the relaxation of there muscles, and there fitness level not being able to cope with the 24/7 heightened nerve activity.

[Hidden in reply to DarrenC]

I disagree. When I was having seizures, I was exercising regularly--I even ran a marathon during that time. When I started taking Lamictal, my seizures stopped. I continued to work out at least 40 minutes 4-5 times a week. For 9 years, I was a custodian, and also worked out an hour every day. Over the last 2 years, I've been decreasing my dosage of anti-convulsant, and I've also decreased my physical activity and I have had no seizures. I believe my seizures were caused by hormonal imbalances, but from what I can learn, very few people know much--if anything--about the causes of seizures.

[DarrenC in reply to Hidden]

Cardio vascular is to do with my energy, controlling the blood flow through my heart, cardio respiratory is to do with strengthening my muscles. Creating oxygenated blood to my muscle cells, which is building my cells. And when i breath correctly, my muscles stay relaxed so when my cells burst they reform with oxygenated blood with them. My breathing activity is a KEY to holding a seizure from absence. It opens my lungs, oxygenating my brain slowing my nerve activity, and heart rate down. I now know that my senses (ie) my feelings create my thought, my thought creates my emotions(ie) temporal lobe activity. I can listen to the de javu of my epilepsy brought on by monotonous sound, now knowing what's happening. I know that trying to watch and fully take on board a TV program, is going to fatigue me twice as much as listen to a debate on radio, knowing that I'm using my eyes, ears at the same time to concentrate on what's happening, creating a lot more nerve activity. And the harmony of music is simply giving me the answers from God. Listen to what you can't hear, he's the one that made us. x

[DarrenC in reply to Hidden]

Why do you think a man will decide to turn Gay? I believe that there chemical imbalance (ie) there oestrogen level from there mother is going to be the higher balance from there parents genes. So as they get older there body weakens(ie) there heart raising in beats creating more nerve activity, there lungs shrink creating oxygen loss to the brain and there muscles weaken, which reduces the ability to control heightened emotional senses. So his atmospheric emotions around a man is going to raise thoughts of kissing him? and as they weaken from there physical fitness which creates your understanding of your senses, there thoughts become pure emotional instead of sensory and they become gay from confused feelings. A child between 1-8 will live there lives on pure sensory understanding of the world, there eyes, ears, nose, tongue and skin a life of pure innocence, where there simply don't question and just accept. So why are they being taught absolutely nothing about life and when they hit puberty turning into a emotional mess!!! wanting to have sex with everything, with no understanding of what respect actually means.

[DrJohn]

I'm so sorry that you have had such a difficult time of it... my son has epilepsy and over the years - like most people with epilepsy, we have had to battle against ignorance in the community, evasiveness from employers and the pretence of knowledge by some Doctors. It is taken many years to get to a reasonably stable situation - and this without any religious epiphany (or whatever floats your boat!). We practise a gentle martial art called Aikido and I run a special class called Aiki4Wellbeing for people with health conditions. I feel that this practice of good and sometimes quite challenging exercise and fitness training is helping him...but he does struggle with lung capacity and breathing. So I am grateful to you foe r mentioning this. Good luck to you in the future...

[DarrenC in reply to DrJohn]

Nice to hear from you, I hope your son is getting the best out of what is available. Your course with the Aikido sounds great, I was in ju jitsu when I was a young lad. The level of intensity I've had to cope with, from the anti depressant prescription has been disgusting. And the extreme ignorance from neurology, has been overwhelming to my daily records. I have been going to church to for the last 5 years, and my understanding of atmospheric emotions is so acute.

I can listen to God on a daily basis, and the blessings I have received are phenomenal!! people need to understand that a child of 1-8 years of age is in a state of pure perfection, living off there sensory senses (i.e) sight, sounds, taste, smell, touch and God will enter there souls through there senses, then when you reach puberty your emotional senses step in creating your personality? and that is why God will ask for you to be baptised, to receive the Holy Spirit in to your life, who weakens your imperfections, and offers you blessings from your faith for God (i.e) your efforts from your instinct. listen to what your eyes and ears are saying to you, that is God speaking toy you offering you guidance. Those with epilepsy have a very strong understanding of there senses, and need to come to terms with the thoughts that are being raised by the afflicted brain cells, by way of there physical strengths. To take away the panic attacks!!

[Hidden]

I wonder why you have continued to listen to doctors who admittedly know little, if anything, about epilepsy--or apparently the drugs they are prescribing. My experience has caused me to question everything every doctor tells me about epilepsy and about every drug they want to put me on. I was on Tegretol for a while and stopped taking it because of the horrendous side effects. I think prescribing 1200 mg per day of any drug, much less Tegretol, is irresponsible, and prescribing more drugs to control the symptoms is very common and, in my opinion, criminal.

My advice is to do research on your own on epilepsy and on every drug you are taking. See what the side effects are and talk to a pharmacist to see how each one interacts with the others.

Doctors are only people, but they are people who seem to want to have people believe they are gods. And many people do. They are only people who should be made to answer for their actions, just like all the rest of us.

[DarrenC in reply to Hidden]

Spot on Beki,

It has taken me along time to understand my health, and what was happening with the drugs.

But now I feel glad in being able come to terms with epilepsy, and realise what has been going on. Cannabis is a serious herbal remedy for neurological conditions, being a muscle & nerve relaxant herb. People need to understand there that, you mix it with tobacco your putting a muscle/nerve relaxant herb, with a stress related nerve addiction drug? the nicotine trebles in strength due to your body being relaxed by the cannabis, and causes extreme anxiety which comes across in panic stricken thought, the same way as epilepsy. You use it pure and it simply relaxes your nervous system with no side effects. But to maintain the body you need to keep up with a good routine of gym work, to raise your natural highs Endorphin!! and strengthen your muscle.

[Hidden]

Hi DarrenC, Thank you for your last post, story and all details. I have been on Carbamazepine and Phenytoin for now over 20 years and more! At the moment I take in total approximately 1200mg. together. My seizures at the age of 17 were bad tonic clonics (grand mal), but as I have got older appear to have calmed down and I have now gone 4 months without any seizures. Everyone is different and all individuals have a different reaction to any medication they are put on, as well as different side effects and more. Hormones has a lot to do with the occurrence of our seizures, and whether it's during a menstrual cycle or not. The only time I have a muscle problem is when l am in the middle of a 35 minute seizure. This definitely causes the muscles to contract and obviously because of this, I have a respiratory problem and need oxygen. Mood changes occur with all medications, but I would rather stick to what is accustomed to my body now than to move on, change medications and cause worse disruptions. I take a good walk daily and find the walking exercise calms the mood when anxious. Heat and migraine are other causes for seizures. Keep well!

[DarrenC in reply to Hidden]

Hi lesmal, Carbamazepine isn't a good drug for epilepsy, it creates a stimulation and heightens your nerves. Your epilepsy is already doing that, this then ten folds your nervous system. So the epileptic seizures are ten times what they should be, and then the side effects of anxiety and depression kick in as part of your personality. You find yourself creating your personality, through your instinct? this makes you very sensitive, and creates a heavy questioning in your mind. For a woman it will effect you heavier, having oestrogen as your main body chemical. Epilepsy is a very cardio respiratory condition, which can be controlled by way of fitness. You can come to terms with what your epilepsy is saying to you, once you gain the physical strength to cope with the nerve activity. And anti-anxiety medication is relaxing, not creating and controlling your epilepsy like anti-depressant. And the carbamazepine is twice as hard to come off than to cope with on a daily prescription. Caffeine and nicotine are deadly for people with epilepsy, stimulating your nerves and demanding more from you by way of stimulation. This then creating short tempers and depression.

[Hidden in reply to DarrenC]

Hi, I don't drink caffeine or have nicotine, am not anxious, not short-tempered and not depressed either, yet stay well controlled! I am also on HRT, am well controlled and will stick to the medication I am on... You appear to know it all! Thank you!

[DarrenC]

Cheers, when your 8 years old and starting a new school, on high st Kensington scared to death. It's quite an extreme feeling when your sent, down to a basement cloakroom to hang your bag and coat, then turning the head to the right, and God stood there as a spirit staring at you, it changes your life at some point. And for me the last 5 years have been phenomenal!! after bumping into 2 missionaries from the church of Jesus Christ of latter day saints. And from the fact that my epilepsy, has caused me to live my life through my sensory senses(i.e) my instinct for 36 years. meaning I'm a mature man, with senses similar to a child, from the age of 1-8 who is in a state of pure innocence. Living there life off there eyes, ears, nose and tongue. That is when God enters your soul, and then asks for you to be baptised at 8 years old to receive the Holy Spirit into your life, with your temporal lobe (i.e) your emotional senses (personality) starting to develop. This is where are imperfections come from, and the pace & cost of life has taken the understanding away from, yours eyes can't lie, and through your beliefs and faith you can understand what life is all about? God is talking to you through your senses, your eyes & ears not your emotions.

[shabaz]

Hi I know exactly how you have felt in the past im going through it now. I suffer from the same epilepsy and feel just like you say its ruined my life and im on the same medication Tegratol 1200mg and clobazam. I also take anti-depressents because of it. Im losing my job as i have it chronic at the moment. I am struggling to get benefits even though I have worked for 24 years. My moods are the same and ive just started with it a year ago out of the blue. People dont understand how you feel and I dont think you get enough support. My neurologist is the same doesn't listen and said you have epilepsy and off you go gave me no information at all. Gave me some tablets with no advice how to take them. He didnt tell me of what epilepsy I had it basically was you have it now jog on. I now have a nurse who is brilliant and comes to see me at home every month. I am also seeing a psychiatrist to help me come to terms with it. My memory is terrible and I darent go out by myself so I have no social life. Thanks for writing that as I understand people feel like me.

Justine