Nicks latest blog update

Hey Guys, its Nick again, time for this weeks blog post.

So I mentioned last week that I would talk a bit more in depth about the disorder and how it's affected my life until now.

Ok so, let me be clear. I am in no way the worst sufferer of this disorder and to be quite honest I feel rather lucky to have triggers that I can control and symptoms that are not completely debilitating. I have struggled to deal with this disorder and still continue to struggle on a daily basis. Before this disorder I had suffered some physical and mental trauma. I felt that my way of dealing with it (Which was not to deal with it at all) was working. In reality it was feeding my anxieties and I was continuously stressed. I’m not going to go into the intricate details about the past but to give you a little insight, two family suicides, a guy died in front of me after I spent 45 minutes giving him CPR, two broken legs, a collapsed lung and a family that want to rip each other to bits. The major trigger for the start of the bad seizures was the loss of my job in March. I am a massive worrier so this spiked my anxiety straight away. I had gone from being able to support both me and my partner to nothing In under a day and I had never been “let go” before.

Losing my job knocked my confidence in my ability to perform tasks to an acceptable level. The worst part of it was that I knew it was coming. I had been under pressure from management (which were all related) for months and they had been trying to get me to voluntarily walk out the door.

Long story short, I didn’t agree with the people who were running the department on several subjects, was very vocal about it and my nose wasn’t a shade of brown so a target was painted on my back. This was a huge amount of stress and I was too stubborn to pack up and leave because I am not a defeatist and do not give in to bullies. I battled with two individuals in particular, neither with any qualifications relevant for the job they were doing and I would take these battles home with me. I wouldn’t sleep, eat and on top of that I was still working when I got home to help the company hit deadlines, sometimes till the early hours of the morning. I was living to work and made absolutely no time for myself or my partner for a long time. Needless to say I lost the battle and ended up on my backside, still stressed from the job and still seething that these guys had gotten away with what they had.I was still losing sleep and not eating weeks after I lost my job, I was arguing and fighting in the small amount of sleep I managed to get, to the point where I would wake up with grazes on my knuckles and knees where I had been taking on the wall in the land of nod. So lets go back a little bit, before the huge amount of stress from work. As mentioned in my last post, I was having symptoms previously. I will describe these now so you have an idea of where I started out. I suffered with pretty bad social anxiety in my teens which were completely different symptoms, the usual feeling sick, can’t look at people etc. In 2014 symptoms started out with a diaphragm spasm,muscle spasms in my chest, stopping breathing in my sleep (probably the diaphragm spasms), perspiring and not being able to regulate my temperature. Constant minor tremors in my left or right hand which got worse with stress and continuous mouth ulcers. I had several trips to the hospital where the spasms got bad and my breathing was erratic. I went to my doctors and everyone agreed (apart from me as the symptoms were completely different) that they were symptoms of anxiety. I kept going back to my GP and requesting different doctors to take an extra look but every time I went, I was coming up against a wall of resistance. After a particularly rude doctor, I stopped trying to get answers. These symptoms persisted through the time I was studying and differed in severity. Some meant a trip to the hospital, others lasted just moments and I could get on with my life to a certain degree. I ended up missing a lot of lectures and the doctors prescribed diazepam. The medication basically just made me feel drunk, even if I went to lectures I was out of it and it did absolutely nothing for the symptoms I had, so in the end i stopped taking them. After I finished my degree in 2016 I had a quiet period where I was relatively attack free, life was great. So we arrive back in April 2017 and the symptoms come back with a vengeance. I am already struggling mentally with the loss of work, some fresh family drama and i will be honest, I was angry and depressed with how life was turning out. It felt like at every stage I was working my nuts off to be knifed in the back and stomped back down. At home and at work, I was negative and let negative people push me further into a rut and past struggles were haunting me. I was also under pressure to obviously find new employment and the interview process. My first seizure hit in the shower, fortunately I was laid down as I like to sit, relax and get the bathroom like a sauna. My heart rate was high (about 120bpm) and i was sat monitoring it, trying to slow it down with some breathing exercises. My diaphragm spasmed and I couldn't breathe or swallow for about 5 seconds. I had a few of these in a row, panic set in as my brain was saying heart attack as I had some pain in my chest. I dragged myself to the bed where I proceeded to lose control of my limbs and shake violently. I was completely conscious and able to communicate but at this point I could not control my breathing and by the time the paramedics got to me I was a sweaty panicked mess and this was just one attack. The doctors took some bloods, an ECG and a chest X-ray and send me home with anxiety. Over the next few months this process was repeated at least twelve times to the point where ambulance crews would just take my vitals and leave me with a report. The seizures were occurring between 10 and 15 times a day, sometimes lasting hours and chaining off one another. Even certain foods would trigger an attack, fortunately one of the paramedics knew a local GP and got me in on an emergency. This guy was a beacon in the night compared to other doctors. He was determined to help me after witnessing me drag myself into the doctors during the beginning stages of a seizure and then watched the full event unfold.

So about a month and a half of having seizures, even after meeting the new doc, I was low and I mean considering taking my own life low. I had had enough and was not getting answers at all. Waiting lists for referrals are months long and the high dose of diazepam I was taking was making things worse rather than better. I literally considered it as a way out and was planning a cut off date for the doctor to get me sorted by. I told my partner to leave as I didn’t want her looking after me. I felt weak, I was scared of what I was eating, had crazy health anxiety (googling every symptom was not the best idea), I felt defeated and was ready to give up entirely. Mentally it had broken me like nothing else before. Physically I was still having seizures, with very little rest bite. I wasn’t sleeping, I had lost about two and a half stone and I am like a rake to start with, seriously, I look like something out of Trainspotting. I was developing new problems either with the health anxiety creating placebo symptoms or my body is just throwing off warning signs. Either way I was stuck in bed and had been for a month solid. Around the end of July I had truly had enough, I called out an ambulance as I had been seizing all day and was exhausted, they reeled off a ton of possibilities to my partner including MS and Parkinsons. They then spent an hour writing a massive report and left. At this stage I had a complete melt down, if it wasn’t for my partner I wouldn’t be here, there was tears, snot and a lot of swearing. I was still at least a month away from my first referral consultation and a family member came to see me, they literally said “I see that you are suffering, but has it killed you yet?”. This was sort of a wake up call. I was laid in bed not even trying to live, feeling sorry for myself and letting this thing beat me up both physically and mentally.

This is the turning point for me and I didn't get my diagnosis till late September. I stopped taking the high dose of Diazepam as this was not helping. It was causing more problems than it was solving and my heart rate and blood pressure were still spiking, exasperating the attacks. I went back to the docs and requested that he prescribe me something to keep my heart rate steady, basically to stop the adrenaline.

I was prescribed 120mg of Propanalol a day, some antidepressants (which I didn’t take) some sleeping tablets and I referred myself for CBT/therapy.

Initially this had no effect, I was still having seizures on a daily basis however after the first week of taking them I noticed a significant reduction. The Propranolol had some narly side effects of their own though, I was struggling to go the loo one day and then never off it another, sweating constantly, low blood pressure which meant I was dizzy all the time, head pressure, bruxism and going almost blind in my left eye for hours sometimes, but it was all better than seizing. By the fourth week I was having one attack a week and I had an appointment to see the consultant soon.

I had been given some medical weight gain shakes by family, enough to last me a few weeks, they tasted terrible but had 700 calories in each so I was able to hit a healthy target. I began eating different foods again, slowly reintroducing even basic things like sugary things to my diet. I was still having the underlying symptoms like I explained previously but without the massive rush of adrenaline, but it was manageable. I saw a few specialists, a dietitian for my weight issue, a cardiologist to investigate my heart, a CBT therapist and finally a neurologist.

I will discuss these in a separate post when I talk about the government services and the NHS. All of my tests apart from a prolactin test came up clear. The ultrasound from the cardiologist was clean and the EEG test was also completely clear. It was a massive load off my mind that it had ruled out a few other disorders such as epilepsy, but it still left me with no answers which was a little disheartening and it was going to be quite a wait to hear from the neurologist. By early September with the help of my partner, I had turned myself around mentally and was recovering physically.I had to cut a lot of the negativity from my life, my moods were still all over the place but I was never suicidal. I changed meds to try and balance the negative side effects but keep my heart rate steady. By the end of the month I was practicing deep breathing techniques and controlling my anxiety. The letter for the diagnosis finally came and I found the Friends in N.E.A.D group which has been up to now, a massive help towards my recovery journey. Just finding others that understand the anguish is a colossal help and being able to use my skills to help others has been a therapeutic way to spend my time.

I still have a long way to go, although my seizures have subsided a great deal, I am constantly on edge.

I have to tell myself on an hourly basis that there isn't

something seriously wrong, that each spasm, involuntary movement or head rush isn’t going to be the end of me and deal with the side effects of the medication. I'm not gonna lie, I do lose all logic sometimes and have to bring myself round, but i'm getting there, i'm positive and i'm not going anywhere! My next blog post will be about my experience with the NHS and Government services, stay tuned for that fiasco. See you guys soon!