Desperate times, call for desperate measures!

Three weeks earlier from the writing of this post: It was a normal morning. Looking forward to going for a walk. It was sunny, and I was happy. I went downstairs, and took my morning medication. That was fine, until about half an hour later. I'm in the kitchen, eating toast. When suddenly, a sick, dizzy feeling, and the all too familiar heat cage, along with anxiety of the fact, I was feeling nauseous, washed over me. "Oh darn it! Not this!" I thought. I didn't know why I felt like this. This, was not normal. My nan asked me what I was thinking about. I replied in a soft, anxious voice, "Nothing." although I was thinking about a lot. The toast going into my mouth, the fact I had to swallow it, the feeling of nausea, the urge to go to the bathroom, and I knew I had to eat it. I couldn't. I made some excuse. After I went to the bathroom, the nausea did not dissipate. It worsened. Starting to become vocal now, making the odd noise or 2, I was taking deep breaths, which weren't working. I didn't want my nan to hear me. I didn't want her to worry. Going downstairs, I lay on the sofa, with my head to the side, breathing heavily, and deeply. It wasn't having any affect. I was pleading out loud, for it to stop, to go away, and for help. I was alone, I was feeling horrible, I had no-one to call, to talk to, to turn to. I was alone, I had to face it. I had to deal with this, alone. So I did, and found myself shaking violently afterwards. This continued the next day, the next, and the next. I only had a two day break, the day after the first spell, and the next day after. Then, it was back. I had a week of it ahead. Mornings, breakfast, meds, water, then nausea, anxiety, hardly any food. That, was my week. Things were getting desperate. Last tuesday, things peeked, and took a turn for the worse. There was the usual routine, of nausea, and anxiety after meds, but I couldn't distract myself. I'd tried theories, like drinking 3 glasses of water with my meds, having my yoghurt straight away after my breakfast, none of the above theories worked. I was at the lowest ebb. I wasn't eating, I'd dropped from 7 stone, to a serious 6 stone, and still, dropping. Something, was wrong. This dose was too high. I knew something was not right. It came to a head, last Tuesday. I hardly ate my breakfast, nor my dinner. The nausea was to severe, and coupled with the anxiety, my throat was constricting. "I am desperate. I need help now! This is getting seriously bad. Things are going to get worse, if nothing is done. I can't put up with another week of this! I can't! I just can't!" In tears, I had made an appointment for the GP that morning, but my own GP was on leave. I tried ringing my Neurologist the day before, but as I was in the Isle of Man, I couldn't speak to him directly at the Walton Centre. I was, for now, stuck. I managed to make an appointment with a GP that Tuesday. Walking there, with a determined walk, I went in, and explained the by now, desperate situation. I tried hard, not to break down into tears in front of the GP. His thoughts, were exactly the same as mine, drop me to 50Mg twice a day, not 75MG. Since then, a weight has been lifted. I am eating more, I no longer have nausea, or anxiety. I am gaining weight. Things, are turning a corner, and I'm finally, on the mend. After a desperate few weeks, I can now, look forwards, and forward to a brighter future.

Weaning off Tegretol.

Hi all. I am currently weaning off Tegretol and onto Lamotrigine. So far, I have increased the dose from 25Mg in the morning, and at night, to 50Mg twice a day. Monday was a bit interesting. At about 6:30, I started to feel dizzy, and sick. It interrupted my tea. I had to lie down. It then passed, and I was fine. Until 10:30 pm. Things went down hill fast. I went to bed, and felt hot. No, not a fever, just my face was bright red, which is the Tegretol's fault. Lying down, I noticed, I started to feel dizzy again, and sort of light headed, but not like you're going to faint. It's sort of unexplainable. I then felt sick again, not like I would vomit, but an unusual kind, throat and stomach churning. My breathing then started to increase, as I began to feel quite scared of how I was feeling. Not normal scared feelings either. I just felt alone, even though someone was just across the hallway from me. Even though my nan was a door away. Even though the door was open. I still felt alone, nervous, and didn't know what was going on. Why I felt sick, thirsty, dizzy, and anxious. My heart rate was normal. I kept feeling my arms, and legs, twitch every now and then, but that was normal, as they did that on Epilim and tegretol. i kept clutching onto the bed covers, as if trying to comfort myself, trying to tell myself, "yOu're okay. It's alright, it will pass, you're going to be fine. Trust me" I was slightly teary, and on both occasions. I knew, and felt everything around me, could hear normally, and was aware, I was in my room, in bed, knew the layout of the room and the house. I was not unconscious, or zoned out. It then passed, and I do remember saying to myself out loud, "I feel sick" and my voice was soft, and nervous. Very quiet, but you could hear the fear. afterwards, i went to sleep, and awoke a few hours later. Feeling shocked. "What the... was that? what just happened? What time is it?" time felt slow. Like the hours before had speeded up. The hour in which the anxiety, or what ever it was, had taken place, had speeded up. It was not normal time. It was like it was all a blur. Now time was normal, but slow. It was late, early hours of the morning perhaps. What had just happened? I will not know. I cannot judge though, whether it was the lamotrigine, or the Tegretol,, as I am not on the Lamotrigine properly. There is still Tegretol in my system. Only when, and only when, I am on the lamotrigine properly, can I then scrutinise it. Then we shall see, but right now, I feel lucky. I think I've struck gold. The experience begins tomorrow, Friday 21st march, when the morning Tegretol, is dropped. Lamotrigine goes solo. We shall then see, just how good it really is. Or if you want to be funny, just how good she really is. You could make it like a gameshow, The cube, for example, where concentration is of the utmost importance. You have to add humour to these things you know, even though they are serious. Then on Monday 24th march, Lamotrigine is increased to 75Mg at night, along with Tegretol, still. That's when things get really interesting. That's the "Here we go" moment. There will be a fight on your hands. One will be conflicting. Or, if we're going to go for the humorous approach, it's like Lamotrigine saying to Tegretol, "Move out of the way. I've come to take over your job. As you cannot do it as well as I can. At least, it seems so." so there you have it, the latest news on me. I hope you enjoy this post. :)

Anxious memories.

I thought, I would let you all know, how it feels for me, when someone shows their direct, or indirect annoyance, or anger towards me. No matter, how gentle you are, the fact you are angry, will speak louder, than the gentleness of the voice. Anxious memories Samantha, can we have a word? is always the phrase I dread. The sudden opening of a door, the slam, Or the footsteps of someone’s brisk walk. Their walking becoming nearer, and nearer. Their breathing slightly louder, and faster than normal. My breathing slightly shallower, and quicker than theirs. The room becomes icey cold, the warmth gone, disappeared like a puff of smoke. Oh here we go. This is it. The blow that I was destined. Every footstep is an effort, every breath slightly harder, and can be heard, in my oversensitive ears, movement is slower and restrained, every heartbeat, growing louder, and faster. Mouth becoming dry, as we walk, leaving where ever I was, probably quietly getting on with work, or relaxing. No time for relaxing now. No time for chilling. Unless you count the chill in the air. We may, or may not, walk to an corridor, with an echo. The corridor, is vast, and wide. Every sound overhead, making me startled. My stomach tingles, and I feel my body jump slightly. I shake, as I stand, or sit, routed to the spot, waiting, waiting for the blow to hit. Then the voice, loud and strong, shouting as loud as it ever has. Probably telling me off for something random. I don’t care. All I want is out, out of there. The person leans over me, or stands close to me, firmly speaking to the echos all around. Their voice reverberating, and reverberating. Over, and over again, through the still, icey air. Afterwards, the air is still, and silent. Although the anxiety, is not. Still, the storm rages. Rough seas, crashing waves, and the gales blowing large stones, and debris onto the beaches below the white cliffs, onwhich white foam is sprayed. Still the storm rages, as i try to take in, the metaphoric beating I ‘ve received.

Adventures of tegretol

Another day, another meal, another argument, and a battle with my body, to swallow food. My appetite has vanished, I can’t get it back It’s gone, and no-one believes me. No-one believes me. The depression, the anziety, the aggression. A battle to eat, a force, of strong emotions, difficulty swallowing my food. I can’t seem to swallow it; to contemplate swallowing it. My enjoyment for food has gone; After that row, I sit. Drinking tea, and inside, an overwhelming feeling of sadness, of depression. It’s my fault, all my fault, the loss of weight, of appetite,, aggression, all, my fault It gains strenth, and all the while, I’m in company. I can’t break down, I can’t cry, I can’t let it out! I leave the company, and break down. Tears flow from my eyes. Anger, and depression, at the same time. It’s annoying, overwhelming, it just comes with no warning. I’m forced to deal with it all the time, every day. what is wrong with me? Why am I like this! Who, or what, is messing with my emotions, i’m so fragile, so volitile, so aggressive, and stressed about it. I know those around me care for me, they want me to eat, to live, to do well, to grow in strenth, to gain weight. I want that too, but it’s difficult. They don’t understand, they never will understand. It’s hard for them, I know. extremely hard. Yet, I must sound, and look like I don’t care. But I do, I care so much. Then there’s the aftermath, of rows. Why should I take my meds? What would be the point? People don’t care, they wouldn’t care if I had a tonic clonic seizure, in front of them, before their very eyes. They would not care; and then there’s the odd thoughts, really odd, that make me think, that’s not me. No way, is that me. “What would happen, if my head made contact with the wall behind me, I suppose no-one would care about that either!” then, I think, Hang on, that’s not me. At all! Goodness, Pull yourself together! I put my hand to my waist, and feel its thinness, I feel my hands move all the way round it, no figure. I dread the weight, on the scales, dread it saying under 6 stone. Dread my nana’s worry, my worry. I know it’s the tegretol, but why is it doing this to me. Why am I a different person. Why can’t i be normal, instead of this emotionally shattered person all the time! This person, who bursts into tears, who gets angry, irritable, annoyed, for no darn reason! Why, can I not be happy, relaxed, enjoy my food, be kind to others, and not break down for no reason! i only hope, my lamotrigine, will change this persona, from who I am now, to who I was before, the happy, subjude, calm, kind, person, who enjoys her food, and has her heart in the right place.. This is what Tegretol does to me, and believe me, I can’t wait to get off the darn stuff! Lamotrigine, save me from this please!

Another emotional journey

Another emotional journey. I went to the Neurologist on Thursday of last week. I told him, of the tingling, and pain I get in my head. This, he said was to do with the nerve endings. I had two options, one to have occipital nerve blocks, the other, to switch medications. I chose to switch. I am being switched to Lamotrigine. this means, a load of emotions will be returning once more. How will I feel? Will I be able to manage the size of the tablets? what will happen during the switch? will I be aggressive, anxious, lose my appetite? have any nasty side affects? drowsiness? nausea? potentially more seizures? although not likely… The truth is, I am scared again. Not of the switch, but of the fact I will not be under as much control, for a while. Seizure control, I mean. I always imagine a scene, at least, when I was switching from Epilim to Tegretol, the scene, or scenes being: It’s silent, in the dead of night. Accept for faint breathing, and cats moving around the house. The wind is blowing outside, and there’s a storm brewing. Clouds are grey and black. The sky is clear, but storm clouds are descending, over the bright starry sky. Inside, clocks and watches tick on, on and on. Nothing else can be heard… except, wait, what was that from the front bedroom, a crash overhead; Maybe one of the cats. She doesn’t move. Again, a noise; she stirs, and listens. Another crash; and a shout; oh no! The person in the back room jumps from her bed; races across the hall, and pushes on the door. It’s closed, but for a piece of paper stopping it being opened. Another crash; “oh no! I know what this is! I need to get in there!”she thinks. Heart racing, and breathing increasing, she tries again. No luck. Again, no luck. Again, for a final time, her hands push on the door.Harder, and harder, shoulders charging at the shiny painted wood. Finally, The paper gives way. She bursts in. Our scenes switch. Night. I am in bed, asleep. Only the sound of my soft, regular breathing can be heard. My watch ticks silently on, on the bedside table. My phone next to it, goes off with a notification. Perhaps a tweet, an email. Who knows. I can’t be bothered looking. Noise fades, suddenly; I can’t hear anything, can’t feel anything, my bed covers, snuggled around me, the bed, solid interior, the sound of my watch ticking. Nothing. I fall downwards; Breathing becoming fast, heart rate speeding up, arms and everything thrashing around, and my whole body shaking; I can’t control it! What’s happening! A few minutes later, I return, feeling carpet, the watch ticks on. I feel the wooden panelled doors of my cd rack, but what is it? Where am I? How did i get here? Perhaps it was a dream? a nightmare? Then I hear a voice. “samantha. You’re okay. You’re okay. Samantha, you’ll be fine.”Who is that voice? I know her. Know her very well. Think, come on! Focus, you know who she is! You know! That’s scene 1. Scene 2. Daylight. An alarm goes off. Time to get up. 8:30. Slowly, I stretch, and get out of bed. I head downstairs to a multitude of noise. the tv, and other noise. My cousin has come over, for a while. I’m at the table, eating breakfast. I’m on my own in the kitchen. “Sam. Sam?” a voice, growing fainter and fainter. Our scene switches to the kitchen. A voice calls. “Nan. come here please! Come here! Please!! Please!” Footsteps downstairs, “Get out of the room. Get out! Stay out!” My view returns. A voice, Oh no. I’m on the floor. How did I get here? “Samantha, are you back?” Someone moves me. Telling me I’ll be okay. I am taken to a comfortable place. Those scenes I imagine. I know they’re not likely. I know that, but I still have this fear, when switching medications, that they will happen. I know though, they are not likely.

The story of my epilepsy.

The following, is a story I wrote, for a magazine at the RNC in hereford. My name is Samantha. I came to the RNC on 30 October 2011. Not knowing what to expect, I was thrown in at the deep end, into a hall of residence, with no-one I knew, and having to do everything on my own. Through this, I made enemies, and had many arguments. When I was born, the only disability I had, was my blindness. That however, was about to change. Something was going to change my life for ever. Something was going to make me learn, to find my feet, to realise everyone is there for you, in times of need. To realise there are people out there who will help you. Even if they disagree with your opinions and views, even if  you had an argument with them, just a few minutes before. Also it would bring me closer to people, in a way I had never experienced. One month later; 30 November 2011. 09:10 am. 10 minutes until disaster. There I was, a normal mathematics lesson. I was doing my work. Suddenly, after a few jokes  between a student and me, an argument broke out. It started to get heated. Another student told us to calm it down. The maths teacher wasn’t in the room at the time of the event. 09:15 am. Silence, and then… it happens. A tonic clonic seizure. A full blown convulsion. I groaned, and fell to the floor. One of the students called my name. No response. Help arrived from the next room. The other mathematics teacher supported me, once the seizure had subsided. They both put me into the recovery position. More information can be found about this on the Epilepsy Society website, or  via their app Epilepsy toolkit. Also, Epilepsy Action’s website as well, and young Epilepsy.  All this was recorded on my dictaphone. I was unaware of this however. I was in a deep sleep. I knew nothing of time, of what was going on around me, of who was there. I knew nothing. Just silence. Silence. I was warm, calm, serene, i was in peace. New nothing of the horror I was experiencing, the convulsions, the thrashing around, the shaking violently, the irregular breathing, and all my muscles contracting and relaxing, as fast as they could. I knew nothing. Where ever I was, I was in a deep sleep, unaware of the crowd gathering in the classroom, unaware, the groan was heard 2 corridors away. My responses to them, when still postictal, was unpredictable. It was almost like one minute I understood and responded, with mm, or MHM. My responses would be varied and far between. My breathing deep, sharp, and heavy. Short, irregular breaths, that were laboured, and not in a regular pattern. I could not communicate, could not obey instructions, could not form words or phrases. This period, is known as the "Postictal" period, the period in which the brain is recovering from the seizure, to becoming normal again. This can last from minutes to hours. Later, I suddenly came round, to hear a voice, telling me they were checking my blood pressure. I remembered the monitor from the day before. Vaguely, I could recognise just about who it was. It was the nurse. Why was I in jeans? What time was it? Where was I? All this was swirling round my head. My brain felt empty. No awareness of time. It was frozen. I was in a mid-time zone somewhere. Was it 7 AM? Had I even got up that morning? Wait, is it morning? What day is it? What time is it? where am I? and who, is that? What's that sticky substance on my wrist? why have I got a huge gash in my tongue, that feels like a hole? Is that blood on my hand? It's bleeding. what have I done? I couldn’t process words, or questions. What made you keel over? What do you mean? What made you have a faint? I don't think I fainted. Did someone upset you? I don't think so, I don't know. What did you have for breakfast? I can't... I... You can't remember... No! What serial do you like? Toast. I couldn’t remember much. Not even of the morning before the seizure. I’d forgotten I had been given my breakfast by the wardens. Forgotten I was in lectures. What I'd done to my hand, was that I'd bitten it, as I went down. I clamped, and literally bitten into it. There were tooth marks in my hand. I was not to know, until I arrived home it was a seizure. The nurses just thought I had fainted at the time, as I was still when they arrived. My uncle heard the recording of the seizure. His words were, “That’s a fit.” They echoed like an explosion round my brain. What? Me? I was silent. No! Me, have a seizure. No! How can that be? I thought. I didn’t know exactly what they were, but I knew enough to know, something was seriously wrong. It was not normal. What had happened to me. Four months later. March 25th 2012. An unusually warm summers day. Everyone’s chilling outside. It’s time for lunch. For some reason, I was very happy that morning. It was almost like a sense of euphoria, as if I’d just done something extremely good, and maybe won an award for it. As if, I was as happy as I would ever be, and nothing could change that, knock my emotions. It was like I was, metaphorically, on top of the world. I could do anything I endeavoured to do, achieve anything. I just felt great. Joyfully, I told Nana on Skype I was heading for lunch. Little did I know, that day was about to change not just my life, but a few other peoples’. 13:00. I’m in the refectory; Lunch is on the table; Suddenly, noise fades; I hear nothing; there’s a huge crash. the table, chairs, the jugs of water, bowls of food, cups of hot chocolate, and glasses, as well as vases of flowers, were pulled over with the force of my fall. As I went down, I hit my head on the hard floor. My skin went a purple colour. Apparently, as I was about to fall, I gasped, before crashing to the floor, with my full weight. Onlookers race to my aid. “Pull the table back!”was said. Students moved the table back. Staff raced to my aid to comfort me as best they could. An ambulance was called. Medics rushed in; A heart monitor was clipped to my wrist; As soon as it registered, it began  fluctuating; From normal, to slower, then speeded up, and went back to normal again, before it was taken from my wrist. Onlookers gasped in horror; before being told, by a sighted onlooker, that they had removed it from me. There was nothing to worry about. Of course, there was a lot to worry about. This was my second seizure. Something, was definitely wrong. I knew nothing. I was blissfully unaware, that there was a drama unfolding, right before my eyes. I caused this drama. I was unaware, there were medics with me, unaware, of people still eating, and not taking any notice, of the drama in front of them. Blissfully unaware, I was being moved, and of the pain I would experience later on. It was silent where I was, so peaceful, quiet. No-one was around, nothing was around me. I was warm, calm, where ever I was, knew nothing, and felt nothing. Knew nothing of the dramatic events, that had just occurred. Nothing, of the thunderstorm, unfolding in my brain. I was strapped to a stretcher; People were calling my name. No response; just confused mumbles from me. “What do you want to be called? Sam, or Samantha?”I was apparently asked. Sternly, I replied “Samantha!” I never knew I was aggressive towards those poor medics, until later on. I felt bad for that. They had done nothing to me, said nothing untoward, why was I that nasty to them. Again, it was a tonic clonic seizure. This time, much worse. Much worse than its cousin; Noise fades into view; I’m in some kind of vehicle, I’m in some kind of seat. It’s a large vehicle, but I’m not sure what it is, or where I am. Where am I? What is this vehicle? Where is this vehicle taking me? Have I been here all the time? Is it night time? Is it Day time? Noise fades out once more. A few minutes later, comes back into focus. I’m going over bumps in the road. i hear voices, people talking, a male, and female. I tried to move, but couldn’t. Why can’t I move? What’s stopping me? Is it a belt of some kind? I'm strapped into a seat, but hang on, where's the seat belt? I can't find the clips. Hands feeling around, I tried to find the imaginary clip. Where am I going? What time is it? What time of day? And, what day is it? It fades once more. Suddenly, we’re back. I’m being wheeled into hospital. I knew some of this, but only just began to realise. I’m being wheeled somewhere. I guess I’m in hospital. Why though I don’t know. I couldn’t tell you. The voice, then filled me in; “you’ve had a seizure. We’re bringing you to a cubicle.” What? I exclaimed. Suddenly coming to some kind of sense. Why? When? Where? How? What time? Who was there? “A few minutes ago.”said another voice. Who is that voice? Who is it? I know it, I think. I can’t remember the name. “Samantha…”then she said her name. “I came with you, you’re in the hospital. You had an epileptic seizure. Do you know who it is? You were in the refectory.” No, I don’t know who it is, wait, hang on, why did you come with me? Why are you here? What’s going on? A seizure? Aren't they serious? Don't I have to stay in over night? They're serious! Seizures, are serious! I tried to sit up, stiffness all over. Then, the pulse, a pulsing, throbbing pain. I put my hand to my head. How did I get that? This egg shaped bruise on my forehead. “You fell, Samantha, and hit your head. You were also sick.” Oh goodness. I thought. Why? Why did that happen? “We had to clean your ID card.” Oh no! This gets even worse. I was sick on my ID? Defacing my card? Now what will happen. I’ll be in trouble I’m sure. Then I remembered, it’s sunny outside, I think it’s Sunday afternoon. My memory was slowly, returning. After a few blood tests, I was discharged. How I managed to inform them of my Nan's phone number, to tell her, all the way back in the Isle of Man, all those miles away, I will never know. Again, I found out, the hard way, people from all walks of life have seizures, including me, they strike like lightning. Also that people will come to your aid, do the best they can to help you. It may not sometimes be a lot, but they do their best. Later on, confused, tired and with a bump on my head, I arrived back from the hospital. When I went home to the Isle of Man, I was put on Epilim Chrono. An anti-epilepsy medication. It does not stop the seizures, but controls them. It is NOT a cure. I still have side effects. Tremors in my arms. Every day, constant vibrations. As I’m typing right now, my arms are shaking. I had to have an EEG, (Electroencephalogram) which scans the electrical impulses in the brain, and checks the brainwave patterns. A normal person would have different patterns to one with epilepsy. Later I had a CT scan. Both concluded the one diagnosis I was expecting, and knew all along, epilepsy. I knew it would most likely be for life. My philossiphy is that you will never be free. Even if you are cleared after a few years, they are random and strike any time, any where, and sometimes, without warning. For those however, that think there is no llife for you, there is. Unfortunately, we were given this card, we were dealt it, so we must play it off. It’s life long, but we won’t let it beat us. We can do so much in life, let’s live it. If we have seizures, we will, if there’s a stigma, there is, people will gradually become more aware. I understand your anger, your agression, sometimes being accused of dwelling on your condition. We are right to be concerned. However, there is a life! There is work! There is enjoyment and there is pleasure! Enjoy it! Live life to the full! We’ll be okay. All of us will. You just think positively. I used to avoid people when they told me they had epilepsy, I will openly admit… Now though, ever since my two, I have become very close to those with it, and want to do everything in my power to help, to understand, and to calm them when they need it. To understand peoples’ frustration, to educate, and make people aware. Just because we have epilepsy, does not mean we are not independant, we can do things for ourselves. YOu can trust us. We’re the same as you all. Just one thing that is different. The electrical activity in our brains. That’s all. If you don’t like it, please don’t mock it. If you find us hard work, tell us. We won’t be offended. How can we improve your comfort. If you feel uncomfortable, tell us how exactly. What is it? If we don’t know, we never will. In this post, I mentioned that I was on Epilim Chrono. I have

Britain's got Talent

Hi. I have some news. I have been asked to audition for britain's got Talent. I am slightly nervous. :)