The unthinkable happened.

Sunday morning, June 15th 2014. and I got up, feeling fine. Took my meds, as I usually did, and went to bed for another half hour or so. I got up, still feeling fine, and wanted to go outside, as it was sunny. I couldn't though, as I didn't know where my chair was, and would find it slightly difficult to turn round, into the right position, as I was going to bring my macbook pro, and iPhone outside. I decided, to go into the living room, and wait for a while. Listening to something on SkyGo, I was enjoying it, when, suddenly, everything fades, or does it? I hear nothing, just the odd, boom, boom, boom, of my heart rate, increasing, and the feeling of "something's coming but what?" then, a drop; I was on some sort of aircraft or something, and we were in turbulence. I knew nothing, nothing of the reality that was actually going on. I wasn't there, I wasn't anywhere. I was just, somewhere. silence; I was in an old memory, but not living the memory. I was not doing the things in the memory, but I was in the house in which the memory took place. I was in a room. A large room, smelling of perfume, and new carpet. The pine wood from the new wardrobes fresh to the nose. I was on a bed, or the floor, with someone. "Where was I?" I was in my cousin's room, in her house, upstairs, and she was beside me. It was her heavy, fast breathing, wasn't it? but wait; why was I then hearing the words, "She's slowly coming round now. Not with us at all." "She's not all there." What was this? Something was not right. I mustn't be there at all, so if I wasn't, where was I? had I been asleep? did someone wish to speak with me? and they weren't getting an answer? why wasn't I answering them? I felt someone rubbing my head, slowly, her breathing short, and heavy, an air of panic in the voice, which sounded different to normal. Deep, warm, but higher than normal. A woman's voice, the woman was leaning over me, observing my every move, breath, and sound. "Who is this? What is happening? Who is here? Why are they saying I'm not with it? Is that me breathing I can hear? Why can't I breathe? Why can't I speak? Where am I? What time is it? What day is it? Was I asleep?" It was almost like a sense of foreboding, "I shouldn't be here. This is not a room I know, or am used too. Where on earth am I!" All those thoughts, running through my head. At the same time, I heard, the person, who I now recognised as Nana, saying, "I'm here, I'm here, okay.. It's alright." Then, I realised, it was only her breathing, only her, in the room, and her, who had just witnessed, something really terrifying, perhaps a tonic clonic seizure. What this particular thing was however, had not registered with me, but I knew, it must have had something to do with me, and something that hadn't happened for a while at least, or if at all. I did something, I should never, ever, have done. This shows, I was still Postictal, and not quite around, yet. I tried to sit up. Immediately, I began choking. "I think she is going to be sick. Lie down, Samantha, come on." I was pushed, gently, back down, onto my side. My breathing, short, and shallow, my chest rising and falling, barely visible, I lay there, heart racing, and not able to move. I just lay there, co-operating with what ever people wanted me to do. My nan left the room, and I lay there, still, wondering, what is happening to me? Why am I just lying here. What was I doing? All this time, Nan was on the phone to the emergency services, but that had not registered with me. Finally, the siren was heard outside. Nana's voice then echoed, from upstairs, "Are you alright sweetheart? You've just had a seizure, do you understand that? You've had a seizure okay?" I just mumbled, mmm, and lay there. I then must have tried to get up, bad move. Why was I doing things, that I should never, ever do, and get angry when others, such as nursing staff, attempt to move someone after a tonic clonic seizure? Yet, I was doing the most highly dangerous of things? Why. Surely I would have known, to stay put? Not to sit up? Finally, the medics arrived. I still lay there, and heard them walk in. They asked me questions, and my responses were in a soft, and weary voice, that was barely audible. They assessed me, checking my pulse, which was very, very fast. My BP was not good either. Finally, I forced myself to my feet, feeling unsteady, and stiff, and walked out, with the help of a paramedic, to the ambulance. I almost slipped on the steps going up to it, and decided, instead of climbing up the first step, and then the second, I just stepped up both of them. I was taken to the hospital. They brought me into the bay where usually all the trauma patients would go. This, was my first experience of the bay known as the Resus bay. I could hear heart monitors beeping further down the room, and could tell it was large. I'd never been in this room before. This told me, they treated people with epilepsy, or people who had seizures, seriously.. They then hooked me up to a monitor as well, and did an ECG, electrocardiogram, to assess my heart rate.. My Nana looked at the monitor and thought, it was in the lower 120s region. I was there for about half an hour, then, discharged. When the doctor came back, from double checking the ECG results with another doctor further down the ward, who didn't particularly care about them, she returned with the verdict. I was allowed to be discharged. "No! No! I don't feel safe anymore. Can I not stay here? I am scared I'll have another! Please!" I pleaded, bursting into tears. The tears were tears of fright I suppose, of someone who did not feel secure, who was nervous of the familiar unknown, of whether there would be more seizures or not, of my reaction and mood afterwards, worried for relatives who would witness them, wanted to be in the right place, should one happen. Later, I got home, and tried to sleep, but at first, it wasn't possible. every time I kept trying to lie down, I ended up feeling nauseous. Nana ended up getting a bowl. I almost brought my milk back. That night, I went to sleep, terrified, of having another. I had not had one for 2 years, until the other day. since that day, everyone's attitude to me has changed. They all seem to be more worried about me, wary of me, every sound I make is analysed, every time I go quiet, analysed, doors left open, ears pricked for any slight difference in sound. Moods analysed, everything. I'm just praying now, that I don't have anymore.

I'm trapped in a cage!

Well all, I finally had a word with the neurologist's secretary. She is going to tell him to call me directly when he arrives back on the island next week. Another seven more days of getting up, taking this stuff, that calls itself anti-epileptic medication, and feeling rubbish, after it. Sick, depressed, anxious, upset, slurred speech, other nasty stomach side affects, which is making me lose weight. Basically what I've just eaten in the morning, and drunk, the toilet gets. Every morning, all the time. I'm stuck in this ritual. I can't do anything about it. No-matter how much I try and eat, after 12:45, in the afternoon, I can guarantee it will be gone next morning. After I sit drinking tea, feeling sick, I just burst into tears. Tears of anger, and frustration. "Look at this! Look at me! Every morning, I'm like this! Where's the happiness! Where's the lively Samantha! Where's my appetite! Where is my normal speech! Where is my general enjoyment for life! Gone, in 2 mouth fulls of water! Gone, when I take those 2 pills. When they dissolve. Everything disappears!" I listen to the birds, the traffic, the laughter and enjoyment of children, and adults making their morning commutes, the sun, streaming through the windows, the breeze blowing outside, the trees and everything rustling, outside the window! All of it, would usually be my enjoyment, usually be interesting. Not anymore! Sometimes I think, I would rather the seizures, just let me drop, I don't mind, at least I won't feel anxious, and sick, and all of what i feel now. For 2 minutes or so, I will be somewhere away from it all. I know there will be drama, in front of you all, know you will have to witness me convulsing, shaking, perhaps screaming, and thrashing around on the floor. But sometimes I think, I wouldn't mind, as long as I don't have this! I wish I didn't have to pop those pills, didn't have to mentally destroy myself for 4 or 5 hours in a day! Why! Why can't I just be normal! Just have that happiness, and everything else, even my enjoyment for my singing has dissipated. Give me it all back for goodness sake! I want my weight, my appetite, all of it! Lamotrigine has taken it from me! And trapped me in this cage, of depression, and anxiety. The bars on the outside are thick, and hard to get through, if at all. I'm trapped in there, and only released at 12:45 pm! From 09 AM, the doors are shut, and I'm trapped, in the same routine! I hate it! Release me from it, please. Let me out! I can't do this anymore! Or else, there will be a river of tears every morning, again, and again. Release me from this cage of frustration, and vanishing before peoples' eyes! Please, let me out!

No response.

It's been a week now, and my neurologist has not responded. He's been emailed twice, and still, no response. He doesn't have to wake up of a morning, not knowing how you will feel for the next 4-5 hours. Not knowing, whether a big one will hit or not. Not knowing how you will eat that day, feeling depressed, and regretting ever taking the meds in the first place. Right now, I'd rather the seizures, than the anxiety thank you. I know I will regret it, saying that, but yes, I don;t like these anxiety attacks, and the worst ones, the black days, are after that lady time. They end up, that I'm waking in the morning feeling dizzy, and sick, even before I have taken my meds. I know those will probably come round again, and I hate it! I hate them! I want off Lamotrigine before those come round! Please, reply!!! I'm stuck, and I want rescuing.

Anxiety strikes again.

Well, since I wrote this last blog post, I have been back and forth to the doctors again. I have broken my own record of how many times I have been to the GP. The 19th of May, I went again, and begged them to call my Neurologist. "Please, call them now, while I'm here! Can you ring the Walton centre?" I pleaded. she called them, and he was not available to speak too. That was typical. She got his direct email, and sent him an email. I could not deal with this anxiety and loss of appetite, due to the anxiety. Every morning, my routine, is as follows: Get up, have a morning cup of tea, take my Lamotrigine, have my milk, then end up going outside for air, having to breathe deeply, for about 4 or 5 minutes, trying to slow my racing heart down. Sometimes it doesn't ware off, until about 3 hours later. That's my day, with Lamotrigine. I went again yesterday, to the GP, and begged him, to email my Neuro again. The neuro had written back, and told me to persevere with the Lamotrigine. I can't, I can't, I can't. The GP understood this, and decided to reply to his email, telling him, I am still having anxiety attacks, and it's stopping me from eating. Now it's a case of waiting and seeing what he says. I only hope he isn't angry with me for not persevering, but I have tried, and tried, and gave it chances, and nothing has worked. It's either, switch number 4, or back to Epilim Chrono. We will see what he offers. I know one thing, I am scared to death of going on Keppra, or Leviteracetam. I know my moods, I know I fly off the handle easily, I know I have a short fuse, and Leviteracetam will magnify that. And you've guessed it, one of the side affects, is anxiety! I will keep you updated on what happens.

An adventurus weekend

Well all, here is the tale of an adventurous weekend. I was given Metaclopromide for nausea, which was a side affect of my Lamotrigine, the day before It is worth noting, that I had had nausea before this, and was noticing that it was coming around, before and after my menstrual period. I also lost a lot of weight due to this problem. Anyway, back to the main story So, I commenced the full course of Metaclopromide on Friday 16th May, the day in question, where the huge adventures begun. So, on the morning of that day, I took my Lamotrigine, followed shortly afterwards by 10Mg of Metaclopromide. Thinking that I was done for the day with the nausea, I carried on doing my usual morning routine. I was told, by my GP, I had to take these tablets 3 times a day. What events followed, are a testimony to the fact I should have consulted the leaflet online, before taking this medication. it is also worth noting, that I was very drowsy that morning too. At about 12 noon, I had my lunch. It is worth noting, that I took the first metaclopromide tablet at around 09:10 hours. It was now 3 hours later. I felt nauseous and a little anxiety crept in too, so I took another tablet, to try and curve it, stop it before it started. I maybe shouldn’t have. About an hour later, I began to feel dizzy, and my breathing became rapid. I went downstairs, and tried to drink my cup of tea, which I could not do. My aunt came into the kitchen, and I told her how I felt. "Why do I feel like this? I don't like it! Is anything going to happen to me? Am I going to have a seizure?" "No, Samantha, You'll be fine. You're not going to have a seizure... If you do, make sure it's while your aunt's in the room." My aunt is a senior health care assistant. By this time, my skin, around my face, and head, became very tight, as if I had a tight band around my head, and my head was in a vice. I could not move my eyes, raise my eyebrows, smile etc. My tongue, was apparently moving in my mouth too. My eyes were moving as well, and my face contorting, and stiffening every few seconds. By this time, my head was jerking involuntarily. Moving from side to side, to the right, and back to the centre. I was also feeling anxious and teary. I went to A&E, where the doctor saw me. They made the mistake of giving me Diazepam, to relax my muscles, even though my neck, was not stiff, but my muscles were as if they were in a vice. The jerking was becoming worse, and I wanted it to stop. "Please, make this stop! I don't like it! I can't deal with this anymore! Please, call the walton Centre! I want off this meds! I hate this! Please, stop this!" I pleaded, tears running down my face. "The only thing, I can do, is give you Diazepam, to relax the muscles. I tried the Walton Centre, and no-one is there." I cried out, in desperation, the tears becoming ever more heavier, and my face, and head spasms became worse by the minute. The jerking, by this time, was violent to the point, I felt my head, being forced to the right, and back to the centre. "It's like a tight band around my head. It's in a vice! My neck is not stiff. It's my head, and face, they're going into spasm!" I tried to make her understand, but she wouldn't listen. A little while later, as I took the diazepam, my anxiety was magnified much more than previously. I was not to feel this, until I arrived home, feeling tired, and very heavy. I wanted to sleep, and felt really weird. The rooms, and corridors, and grounds, were suspended in mid air, the wind blowing gently, swinging them back and forth. I was probably about 50 feet high, off the ground, on a platform, looking down on the scene below. I stood on this platform, feeling drowsy, and calm, for the moment. Walking, on this platform, was quite beautiful. Feeling it move, back and forth, as the breeze gently blew it. When I arrived home, I got slowly out of the car, again, onto the metaphoric platform, and moved into the house. "I am tired! I need to sleep! I will just sit here, and ly on the sofa, and sleep!" That, was not going to happen. My uncle came to check on me. "Samantha, are you okay?" Then, the mayhem broke loose. "No! No! I'm not!" I tried to explain. "How do you feel? What do you feel? Tell me. Samantha, tell me!" he replied. "I can't! I can't describe it! I feel sick! I feel weird! I don't like this!" I tried to say, in between fast breathing, shouting as if in pain, and tears. I tried to move, but he stopped me. "Samantha, this is anxiety. Slow your breathing down. Come on. Slow down. Samantha! Samantha! Listen to me. Slow your breathing down!" I tried, following him, but failed. "I can't! My heart is racing!" I exclaimed, in a terrified voice. Feeling sweat begin to flow, I continued trying to slow my breathing down, but with fruitless effort. "Samantha, listen to me. How are you feeling now? Talk to me. Talk to me. Come on." he tried again. This time, the distraction technique. "What would I do if I wanted to send a message on my phone, on facebook? Samantha, come on, tell me. You know this. I know you do. Well? What do I have to do?" he asked, over, and over, trying to make me listen, and understand what he was asking of me. Finally, after about 10 minutes of him asking, I reasoned, and answered him, but in a slurred, anxious, and scared voice. Finally, after one solid, long, and terrifying hour, I calmed, and my breathing became slower, and deeper. My vocalising, lessened, and I became quiet. I lay there, still shaking a little, but was calmer now. "This is the Diazepam taking affect Samantha. You are relaxed now. Aren't you? Yes? You are aren't you?" he asked. "Yes, I think so. I think so." I responded, in a calmer, softer, and slightly more cheerful voice. "There you go! You're laughing now! You're nearer to the girl I know. I'm going now."And with that, he was gone. My whole body felt heavy to lift, and stiff, like I would feel after a tonic clonic, that I did not have. I felt extremely tired, but sleep was impossible. Later, the anxiety returned, and continued, right into the night. My Nana kept me in with her, that night, too keep an eye on me. She was right to do so. When going to bed, the anxiety was starting to become severe once more. Breathing increasing, heart rate increasing, mouth becoming dry, as well as the vocalisation, again, I got into bed. Shaking, I lay there, trying to get comfortable. I couldn't. I began to shout again, and cry out, as if in pain. "Calm down! Slow your breathing down Samantha. It's anxiety. Calm down. Come on." my nana tried to tell me. I wouldn't listen. "I can't! I feel funny! I feel strange! I don't like this! Please, Please, make it stop!" I pleaded in desperation. After another solid hour, I eventually calmed, and went to sleep, but it was a very restless, and uneasy sleep. It is worth noting, that that night, I took my Lamotrigine at 10 pm, an hour later than normal, because I was anxious about the diazepam's affects. The next morning, I awoke, and immediately, the distress returned. I had forgotten, I had taken my Lamotrigine later than normal, and made the huge mistake of taking it at normal time, but half an hour earlier, 08:20. Things deteriorated rapidly from there. The anxiety worsened, my pulse became rapid, and I began to sweat, and look clammy. I was shouting as if in pain, and not even visitors, who came to check on me, calmed me. I was tossing and turning in bed, was unable to eat, and drink, as I felt nauseous, when ever I swallowed anything. This continued for about 2 hours, by which time, my great aunt, who was the first visitor who came to see me, advised my Nana to call an ambulance. Not even my favourite radiostation, Classic FM, calmed me either. I was moving a lot, restless, and extremely distressed. At one point, I heard a rushing sound, in my left ear, which muffled my hearing, as well as pressure in that ear too. At that moment, I worried I was going to have a seizure, and I was alone. The ambulance arrived, within 5 minutes of them being called. The paramedics came in, but did not witness me in such a distressed state as before. Perhaps knowing they were on their way calmed me slightly? But did I even understand that? Was I with it at all? I was responding, but quietly and in short sentences. My speech, I think, was slightly slurred. Probably because I had not eaten, or drunk much that morning. They checked my sas, which were normal, my BP was raised, my temperature was slightly elevated, however my pulse was very fast. I was finding it difficult to stand, and felt weak, and nervous. Was the diazepam still in my system? Had it interacted with my Lamotrigine? They decided to take me into A&E again. Off I went, missing a family function, which I wanted to attend. It was the day of all days, the eve of my 21st birthday. Typical. I arrived, and was again assessed. While in the ambulance, which I forgot to mention, they checked my BP, sats, and heart rate, as well as temperature twice, before arrival at the hospital. The ETA was about 10 minutes. After assessing me again, the usual checks, as mentioned previously, I was left in a cubicle, and had to wait for about half an hour. The doctor, who came, was the doctor, who saw me the night before. The one, who gave me the diazepam, AKA one of the Benzo class. In the end, I was put on an intravenous drip, of sodium chloride, and potassium chloride, for about 2 hours. I also had blood tests, which were normal. It is worth noting, that when I was being brought into the ambulance, the paramedics requested my medication box. As soon as they saw the metaclopromide, they were horrified. We were then told, this medication should not be given to people with epilepsy. That was how my last Saturday went.

Desperate times once more.

Well, just when I thought I had managed to stop the nausea, it struck again yesterday with full force. I was just sitting there on the sofa, as you do, listening to the Jeramy Kyle show, funnily enough, when out of nowhere, it struck. The all too familiar feeling washed over me. The dizziness, the stomach starting to turn, the small heat cage threatening, the panic, all of it. I only ate a quarter of my lunch yesterday, and i knew that wasn't good. I then discovered, a little while later, I had a rash on my face, and spots. Oh darn it! Here we go again. I thought. This needs to be stopped. I got up this morning, and before I'd even taken my Lamotrigine, the feeling struck. What on earth? I thought. Again, I can't deal with this. I don't know whether it, and the lamotrigine are connected, but it's possible. I went again, to my gp, and this time, broke down into tears. I told her everything, and that I was at breaking point. I thought I had stopped it, dealt with it, and now, it's back! I was devastated. I was given forms for blood tests, and an anti-nausea medication. I am hoping this will stop everything. Now, it's, what will the bloods show? She is also writing to my Neurologist, who will probably think, exactly what I am thinking, Not again!

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.