Tag: non epileptic attack disorder

Posted in Archive, September 2013

Start of Something New

Posted on by dystoniaandme

Happy, on top of the world, ecstatic, over the moon. Put this combination of emotions in to one and that is me now. Today has been a fantastic success. I attended my first day at college and loved every second of it. The lecture today was on Anatomy and Physiology, which was just perfect as I find it an incredibly interesting subject. A lot of what we covered today I had already learned at university so it was a bit like revision, I loved this as I had remembered everything, which enabled me to contribute to the lesson more.

Tomorrow’s lecture is a practical one. This excites me and makes me nervous. I am sure my body shall be fine with it, but as with all things in life you can never be a hundred percent certain especially with Dystonia, hopefully tomorrow’s practical shall put the tiny worries to rest. The four hours tomorrow shall all be practical but from next week onwards the Friday lectures shall be 2 hours practical and 2 hours focusing on business and how to set up your own business. This is fantastic as once qualified I shall be setting up my own business so that I can work from home.

I decided not to attend riding today as my sight has not been great. I have been full of the cold which has caused more spasms. It has particularly been causing an increase in spasms in my eyes. Annoyingly the spasm that has occurred most is the one that causes my eyes to roll up into my head, leaving me blind, the pain of this particular spasm causes me to have a Non Epileptic Seizures most of the time. This happened today at college, thankfully before the lesson started, but reassured me that I was making the right decision not to ride as I would be putting myself and the volunteers at risk. I am looking forward to next weeks session though.

I feel like a ball of positive energy! I am brimming with happiness and full of excitement for tomorrow. Being able to study again is so satisfying and opens many doors for me. In a way I feel normal.

I’m so happy!

 

Posted in Archive, September 2013

Positive Days!

Posted on by dystoniaandme

Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.

I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.

Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.

I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.

I am really happy at that moment  and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.

Posted in Archive, September 2013

Exhaustion

Posted on by dystoniaandme

My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.

My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.

Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.

I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.

I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.

 

Posted in Archive, August 2013

Amazing Consultant Appointment

Posted on by dystoniaandme

Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.

He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.

I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.

I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.

Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.

 

Posted in Archive, August 2013

Acrobatics

Posted on by dystoniaandme

The ability my Dystonia has to twist my body into any position it desires never ceases to amaze me. Having hypermobility syndrome aids it somewhat. The two conditions are both painful and amusing. Over the last year my body has got itself into positions that are simply not natural. I always knew my hands moved in ways that were not normal, but never realised that the rest of me could.

Some of the positions Dystonia has put me in has reduced me to tears of both pain and laughter. Take for example last October, I ended up on the floor doing the splits, something that I had never done before. A month or so ago, the spasm in my leg caused my leg to turn back to front, a movement that shocked those around me and triggered a non epileptic seizure.  At other times it has caused slight embarrassment, but this is something I accepted as part of the Dystonia parcel a long time ago.

This evening I was crawling to the next room as I did not want to use the wheelchair, my right leg quickly spasmed sideways, I ignored it as it was not preventing me from moving. However whilst I was crawling through the doorway my hip went into a spasm causing my spasming leg to shoot up and my foot to become caught under the door handle. Both my mother and step dad came to help me. My mum supported me incase I had a seizure and my step dad wrestled with my spasming foot to free it. I was on my hands laughing. The situation was ridiculous. At 20 years old I am crawling around trying to have some sort independence yet even this simple act is not alway possible. It is so ridiculous that I did not feel cross or upset, all I could do was laugh it all.

Throughout the last year my spasms have shown me just what my body can do, and it amazes me. I often joke that I would make a fantastic acrobat or ballerina. Though the spasms cause pain and pull my muscles, I refuse to let it get me down. Instead I see it as a strange talent that provides entertainment for all.

After all why cry when you can laugh?!

Posted in Archive, August 2013

Harsh Reality

Posted on by dystoniaandme

September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.

My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I  go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.

I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.

On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been  waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.

Tomorrow will seem brighter, and I will get there eventually, one way or another.

Posted in September

Return from Holiday and Sensory tricks

Posted on by dystoniaandme

I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.

The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.

Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!

I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.

Posted in Archive, July 2013

The Many Wonders Of The Brain

Posted on by dystoniaandme

The human body is an amazing thing, it is a complicated being that relies completely on the brain to be able to function.However if there is one tiny glitch in the brain then dramatic abnormal changes occur. I am completely fascinated by my brain, I would love to have electrodes on my head for a few days to monitor it, so I could get a glimpse of what my brain is doing wrong.

Take yesterday for example, I don’t remember the day at all, but my mum found me unconscious  due to my Non Epileptic Seizures in a chair, where I remained unconscious for a few more hours. My poor mum had to spend five hours in my room looking after me. Due to my lack of memory we have no clue what exactly caused me to started having seizures, when I came round I apparently complained about my knee a lot, however my knee other than being a bit bruised is fine today. It is times like this that I would just love to know what exactly is going on in my brain. Whilst Dystonia is extremely painful it is also utterly fascinating.

I consider myself to my extremely lucky that Dystonia is not fatal. I may moan and complain about living with it, but in comparison to so many other people on this planet I am considerably better off. I simply have a misbehaving alien bouncing around my brain pulling strings to make different parts of my body react or knock me out.

On the 28th of this month, I am going away to the Cotswolds with my family. I am extremely excited as I have not been on holiday in a few years. Even though my spasming body will still be with us it will be fantastic to have a change of scenery. I plan on relaxing, taking lots of photos and enjoying every single second of our holiday. I am now on a countdown to the 28th!

This week my blog has received well over a thousand views! I would like to say a humongous thank-you to everybody who is reading it. I hope it is raising awareness and helping others!

 

Posted in Archive, July 2013

Spasms, Seizures and Specialists

Posted on by dystoniaandme

Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.

As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.

This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.

This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.

Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!