Tag: Non Epileptic Seizures

Posted in Archive, March 2016

3 Weeks Rehabilition Program

Posted on by dystoniaandme

After a year and a half of waiting tomorrow I am being admitted into The Royal National  Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients  of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.

The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would.  Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on  VLOG and blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.

I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.

Posted in Archive, March 2016

I’m Not Sorry…

Posted on by dystoniaandme

My blog post earlier in the week sparked conversation on social media which is something I love to see; it also got me thinking. When I inform a date/potential date that I’m ill, I almost always apologise. I don’t quite know why I say sorry. Perhaps it is because I know that I’m not exactly what you see, but who really is, or maybe it is an automatic reaction to help deal with the social awkwardness that I’m feeling and attempting to suppress. I am awful for stuttering out an apology whenever nerves take hold.

This is a quality of myself that I can control. A rather refreshing thought. So after a period of reflection I’ve decided I’m no longer going to apologise for my conditions. They are part of me, good and bad. If I can learn to see the humour in them, then others can too. That’s not to say I won’t profusely apologise if I spasm and hit someone, of course I will – then again I’ll also probably laugh.

I feel quite delighted with my decision. Taking another step, and embracing my alien just that bit more.

Posted in Archive, March 2016, September

Rushing Out The Door…Dating Disaster Three

Posted on by dystoniaandme

This took place about a month ago. I normally don’t get too nervous on dates; I don’t see the point in getting worked up over them. This was the exception to the rule. My nerves however were not because of the guy I was meeting, but due to the fact he did not know that I was ill. It was the first time I had agreed to a date without informing the guy beforehand that I am a walking talking accident waiting to happen.

12630849_828111473981300_1776683335_o
Ready for my date

We got off to a great start, sipping cocktails in my favourite bar. The conversation was flowing with ease, we laughed a lot and the odd pause was comfortable. Two hours in I found myself still unable to switch off to the fact he was unaware of my bodies failings. Several drinks later I finally worked up the courage to bring the topic to the table. My words were rushed as I stumbled over a brief synopsis of my conditions, my nerves reaching their peak.

His body language said it all, it was in complete contrast to his words. As I fumbled with my explanation he quickly went from leaning towards me holding my hand, to sitting bolt upright with his hands tightly folded in his lap. I pushed his posture from my mind, telling myself it was probably just due to the slightly uncomfortable nature of the wooden benches we were perched on. A ridiculous thought I know, but it was an easier one to deal with. He muttered a brief acceptance, waving his hands around, reassuring me that it didn’t matter what I had going wrong.

Minutes later, during the first awkward pause of the night, he downed the rest of his drink. Jumping up from the bench, offering to buy another round, he strode off before I could answer. I glanced down into my still half full cocktail, refusing to turn around and watch what I knew was taking place. I may be hopeless at dating but I’m not a fool. Knowing he was rushing out the door I didn’t want to humiliate myself by watching it slam behind him. This isn’t a common reaction, most pretend to be fine with it before cutting off contact, however this is not the first time its has happened. My options where quite obvious I could leave now and head home or I could finish my cocktail alone.

I love cocktails so naturally I stayed and finished it. It may have been an awful date, but hey, why waste a good drink.

Posted in Archive, March 2016, September

An Exciting Month!

Posted on by dystoniaandme

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

Posted in Archive, November 2015, September

Dear Mr. Hunt

Posted on by dystoniaandme

Over the last few month social media has been aflame in reaction to your demand of a seven day week NHS, and dismissive and degrading attitude towards Junior Drs. For weeks I decided not to weigh in on the argument but as an extremely frequent user of the NHS I feel it right to raise my voice. I may sit here typing away and complain about yet another run in with my neurologist, but whenever I have really needed the NHS they have been there, 7 days a week, 24 hours a day!

For almost two years my condition was seriously uncontrolled, this resulted in an ambulance being called out at least once, if not twice, a month. The paramedics had never heard of any of my conditions; they had to learn on the spot and stabilize me the best they could before transferring me to the hospital. My family have nothing but three years of positive thanks for the paramedics we have come into contact with.

Whilst I lie seizing on a trolley, unconscious in a hospital because my brain cannot deal with the pain my movement disorder is causing; it is the Junior Drs that 9 out of 10 times provide the treatment. They are not yet stuck in rigid textbook ways, they want to learn and get stuck in with my non-compliant body, trying everything they can think of.  They have gone above up and beyond for me.

My neurologist has scheduled appointments at 5pm but not seen me till gone 6pm. He could have sent me home; he could have had me booked into another clinic or requested a member of his team see me. However, he stayed on into the evening to treat me, he spent more time than he needed listening and answering my questions. His clinic had long since closed but he always makes time for those who need it, I have not once seen him turn a patient away due to the time.

So you see Mr Hunt, I have experienced a fair section of the NHS services over the years. I have had scheduled appointments and I have been rushed into resus by ambulance at 3am on a Sunday morning. They are already providing an incredible 24/7 service, instead of cutting budgets and debilitating already struggling hospitals, try enabling them for a change!

Posted in Archive, July 2015

Hydrotherapy

Posted on by dystoniaandme

Today I had my first Hydrotherapy session, this was the first in a course of six. This morning I found myself feeling a mixture of emotions. Part of me was incredibly excited, I previously had hydrotherapy back in 2009 to treat Complex Regional Pain Syndrome, and found it to be very helpful, so I know just how beneficial it can be. However I was also slightly nervous, I could not help but wonder how my quirky body would react to the therapy now. Would it set a seizure off? And if it did how quickly would the staff react? The one positive being, if I had a seizure, that the hydrotherapy takes place at my local hospital and the A&E staff know me very well.

The session could not have gone better. The pool was wonderfully warm which helped relax my rather achy muscles. Having the water support my joints whilst I did the exercises was great as while the water in itself provided a challenge, it also meant I could not hurt myself. For example whenever I twitched in the pool the water provided a resistance to my arm, slowing it down slightly and supporting it, which meant I didn’t hurt myself like I normally do. We had lots of laughs during the session, with my spasms ending up with me splashing my physio repeadedly in the face, and the floats that we had been using during an exercise going flying across the pool. It was great for it to happen in a safe, pain free enviroment!

Below I have put a sneaky photo (I was trying to avoid capturing other patients) that I took at the hospital earlier, it lists some of the benefits of Hydrotherapy. This includes pain relief, and reduction of muscles spasms. It shall be interesting to see if it will help with the spasms I experience! If you have had Hydro, feel free to drop me a line I’d love to hear your experiences.
11778988_739474566178325_838772252_o

Posted in Archive, February 2015

Out of Control

Posted on by dystoniaandme

I’m not sure where to begin. There is so much pain and if I am quite honest it is making everything extremely cloudy. After months and months of being seizure free I think today I had one, the memory loss that I seem to be experiencing confirms it. The devastation this causes is hard to put into words. I’m scared to leave the safety of my bed in case I have another, as one fall will be all it takes to pretty much guarantee an ambulance trip to the local hospital. After spending the last two days there (one planned trip, one unplanned), I don’t particularly fancy going back again so soon.

One of my Dystonia symptoms is a strong twitch/jerk, in my left arm. It flings my arm out rather violently to the side, it is completely out of my out of my control. This has been controlled by 3600mg of Gabapentin for the last two years but this no longer seems to be enough. It started off with just my shoulders jerking, I should have gone to the Drs then but instead I ignored this symptom. It’s got to the point now where my arm is flinging itself out to the side every few minutes with such a force that it causes horrendous pain when it collides with something, which it often does. I have had to resort to wearing a splint on my wrist to protect it as it had become rather swollen from the several times it has hit door frames, walls, hospital beds, etc.

10983095_652509308208185_574662819_o

 

My GP has decided to up the amount of Topiramate I take, which is an old antiepileptic medication to see if that will help. I take Topiramate to control my migraines but as my GP pointed out old antiepileptic medications such as Topiramate and Gabapentin often have many uses. So fingers crossed it works as I’m really struggling to cope. In all simple truth I just want someone to hug me but as I told my mother earlier I’m to scared to let her do so incase I hurt her.

I’m scared of my arm, the pain its causing and how my body irrationally responds to pain. This situation is impacting my life already – I daren’t walk into a shop now I’d break their stock – and I refuse for my life to be put on hold yet again! I really hope my little Dystonia Alien can hear me. I hope he is trembling in his tiny boots. As eventually my fear will give into rage, and I sincerely hope that the Alien has the sense to uproot and leave than do battle with me yet again.

Posted in Archive, November 2014

Looking Forward

Posted on by dystoniaandme

At the start of this week I had an unusual amount of extreme spasms, these had been triggered by a medication and have now settled down. At the time it would have been sensible to have spent the day in bed where I would have been safe. Instead I dragged myself, rather literally, to college. Now my class have witnessed some of my spasms but not to this extreme. Previously I would have wanted to stay home due to embarrassment, instead I went to college embracing my illness and was only irritated at my pain levels.

As much as I would rather that I did not have any of my chronic illnesses, I am thankful for them. Since being ill my confidence to go out in public with my limbs distorting, my jaw dislocating and my body paralyzing when it has had enough has slowly climbed. Now I can laugh my spasms off and joke about them. I am very open with others about it as I would rather educate them than have these 3 illnesses remain unheard of. I must give credit to my class though who did not bat an eyelid at the extremes my body was going to, I know this helped me relax when I got there. Dystonia and Lyme Disease may have turned my life upside down but it has also filled me with determination and inspiration to pick up the pieces of my life. I always thought that I had to stick these broken pieces back together exactly as they were, retracing my steps, but what use is living in the past? Now I’m picking up the pieces and carving a new path for myself.

I am going to be cured of Chronic Neurological Lyme Disease, so despite the fact I will always have to live with Dystonia and EDS, I have so much hope in my life.

Posted in Archive, October 2014

Clinging To Hope

Posted on by dystoniaandme

Frustration. Worry. Pain. Hope. Joy. A selection of the emotions that over the last few weeks I have experienced. I have improved leaps and bounds since I started new treatment for Chronic Neurological Lyme Disease several weeks ago, there is a long way to go but the improvement are more than I could dared to have hoped for. Yet I feel like I am clinging to these improvements, that they might slip away at the slightest wrong move.

I must admit that on some level I am fuming that it has taken 16 years to get diagnosed. I have spent the majority of my life ill, passed from one specialist to the next, having test after test. The result of their continued ignorance is that I shall now have to live my life with Dystonia. I was not born with it, as far as we know it is not genetic, if I had simply been given antibiotics when I was six or in the couple of years after that I would not have to live with (a currently incurable) movement disorder.

I would not have to cope with the agony of my jaw dislocating due to spasms, or my neck twisting hideously. My ligaments throughout my whole body would not have been so stretched due to spasms that it shocks physiotherapists at the extent of the damage. I would not have developed pain triggered Non Epileptic Seizures if not for Chronic Neurological Lyme disease and Dystonia. I would not have spent 10 hours unconscious seizing in A&E on New Year’s Day 2013. I would not have collapsed and seized in the middle of roads, on the stairs, in shops etc. I would not have put my family, my friends, and myself through hell and back.

Although I have always been ill in one form or another it was not until 2012 that it became disabling, right at the end of my first year of Midwifery training. As many of you know, Midwifery is my dream job, and I hope to one day be able to go back to my training. More than Midwifery I dream of life without illness (I except I have to live with Dystonia). A life where my family don’t have to plan their activities around my health. A future where I can live life to the full without worrying about the impact it will have on my health! Without full treatment for Chronic Neurological Lyme Disease I won’t get better. I will continue to deteriorate rapidly. Lyme Disease has claimed the lives of too many people already I don’t plan on being its next victim. I need to raise £10,000 to fund vital treatment if you are able to please help or share this page/link! https://fundrazr.com/campaigns/erfg6/ab/04081d

 

Thank-you!

x