botox – Page 3 – Dystonia and Me

Archive, May 2016

What Causes Dystonia?

Posted on May 3, 2016February 24, 2022 by dystoniaandme

Currently the exact cause of Dystonia is not known; though a number of problem areas have been linked to the condition. Research has shown that there is a fault with a section of the brain called the basal ganglia. It is only in a small minority of sufferers that the condition has a clear cut cause.

Dystonia can appear on its own, secondary to another medical issue or as a result of medication – this is known as Tardive Dyskinesia. At the current time 80% of children diagnosed with Dystonia have it alongside a primary condition for example Cerebral Palsy. In adults the condition can be caused by a stroke and other neurological issues.

As research is progressing more genes are being found to be related to different forms of the condition. Studies have found that some cases of Generalised Dystonia are hereditary. However even if there is a genetic issue it does not guarantee that you will pass on the condition. It is thought that there is between a thirty to fifty percent chance of a child inheriting Dystonia depending on the mutated gene and type of Dystonia. So far over 20 genes have been identified in relation to Dystonia, with more being found all the time.

For more information on the genetic links to Dystonia I recommend http://www.dystonia.org.uk/index.php/about-dystonia/causes/is-dystonia-inherited

April 2016, Archive

Curve Ball

Posted on April 23, 2016February 24, 2022 by dystoniaandme

You would think after almost four years I would have fallen into sync with the pattern of my botox cycle. I would know when to expect the good spells, and be prepared for the out of control moments. Perhaps it’s simply misguided denial that has resulted in me still being unable to predict these moments, it wouldn’t surprise me really.

Up until this evening I had been enjoying a really good run. My body had been on very good behavior and as usual when I’m in this part of the cycle I had been making the most of every blissful pain free second. This evenings turn hit me out of the blue. I had been feeling slightly off whilst getting ready for a night out with my friends but hadn’t been able to quiet put my finger on why, so had decided to just ignore it and carry on laughing.

It wasn’t until we started making our way to our first destination of the evening that I realized what was wrong. Sitting down I had not noticed that the top of my back was slowly contorting. Each step I took was agonizing. My body simply twisted and further muscles joined in.

I’m not a naturally quiet person, I only generally quieten down when I’m in pain. The fact that I was virtually silent alerted my friends quickly that I needed to go home. So here I am now, lying down, arguing with myself, dressed up for a night out.

But hey at least I recognized I needed to come home.

Archive, November 2015

Week 7 – Agony

Posted on November 10, 2015February 24, 2022 by dystoniaandme

images I’m currently on week seven of my Botox cycle. My injections are not being administered for another week due to a mistake (lets presume it’s a mistake and not my new neurologist being devious, because being frank I would not put it past him). I should be in bed asleep right now. Normally I would currently either be asleep or out with friends. Instead I am medicated to the extreme, I have lavender wheat bags heated up wrapped round my neck, and resting along my jaw and heat packs stuck along my back. To say I’m in agony would be an understatement.

I have resorted to taking Oramorph, a medication I try my best to avoid, however I would much rather give in and take it than have a seizure (click here to read what a seizure is like), and right now I’m concerned that with the amount of pain I am in that I will have one. My brain is not staying connected to my mouth tonight, functional paralysis is something I have suffered from for a few years now, but it has never ceased to terrify me. I understand that it is simply my brain being unable to cope with the amount of pain I am in, so it disconnects from the affected part but it is an unnatural experience that no matter how much I attempt to laugh off unnerves me.

Tonight my jaw is particularly bad, and is frequently being functionally paralysed leaving me unable to verbally communicate. It may seem like a small thing to some, but when you are trying to desperately to get any part of your mouth; whether that be your lips, tongue, just anything, to move and they won’t, apart from when they spasm, its horrendous. I cannot yell for help if I need it, I cannot cry in frustration or call someone to talk too to distract myself. I am stuck with my jaw spasming, distorting itself in ways that should not be possible, threatening to dislocate, and all I can do is cry silent tears, pray that I do not have a seizure and use this blog as an outlet for my pent-up frustration with this crushing condition.

I have a 9am lecture tomorrow morning. Which I am determined to attend, most likely in a wheelchair for my own safety, one of my close friends has agreed to take me there which has helped put my mind at rest. For now it is back to attempt sleep and hope that my little Dystonia Alien allows me some rest

Archive, October 2015

Using My Wheelchair At Uni

Posted on October 1, 2015February 24, 2022 by dystoniaandme

Today was the first time I have had to give in and use my wheelchair at uni. I had anticipated that today would be harder than usual as I had traveled to London yesterday for my routine injections. My body always reacts badly to them for the first 24 to 48 hours, normally this leaves me in a lot of a pain and with an increase in spasms, which with a mix of painkillers and muscle relaxants I can manage. I therefore had not expected to fall over when getting out of bed this morning. My back and neck had gone into a hideous spasm and my brain had functionally paralysed both legs and my left arm. I spent half an hour lying on the floor like this, debating what to do. I gave myself an hour in which if I managed to get dressed I would venture to uni in my wheelchair and braces, and if I was still on the floor I would ring the Wardens.

I felt extremely proud of myself that it only took half an hour to get dressed this morning despite my brain fighting me, this must be a new personal best. I admit that as I braced the majority of my body I was extremely nervous. My peers are aware that I am ill, but they have never seen me like this, I had no idea how they or my lecturers would react. Within minutes of being in uni my nerves were swept away. Not only did no-one bat an eyelid, but people helped me when I needed it without me even asking.

Part of me had strongly wanted to not go in to uni today. I was worried of what others would think, and how I would physically cope, I had already had several draining days and was concerned that this on top would be too much. I am extremely glad that I took the leap, and forced myself to go. It will help keep my mind at rest the next time my brain decides that a day of alternating between spasms and paralysis would be fun.

Archive, September 2015

Another Referrel

Posted on September 6, 2015February 24, 2022 by dystoniaandme

Sitting back in the upright, green leather chair, I stare straight ahead at the wall with my left eye covered up, where supposedly I should be able to see two rows of letters. I can’t see a thing. Not even there outline. I can see a white blurry box on the wall but that’s about it. The optician is quite frankly horrified at the deterioration of sight in my right eye. It has only been eight months since my last appointment, this dramatic result shocks us both. I thought my glasses prescription just needed a slight tweak. As it turns out new glasses cannot fix this issue. By the end of the examination she murmurs a simple sentence that chills me. “I need to refer you to the hospital, the muscles in your eye are not working properly”. What?! This was meant to be a routine appointment.

I questioned whether it could be my Dystonia, and while it was a possibility, she was not convinced it was. She explained the three different medical specialists I would most likely see at the hospital, the last being a neurologist. It always seems to end up there.Can I just have a new brain? As it always goes with these things it shall most likely be a wait before I am seen. In the meantime the possibility of another intruder controlling my body, my sight, hangs in the air. If it turns out to be Dystonia then other than piling me with more medication there is very little they can do, as they are unable to inject these particular muscles.

Over the years I have always been told that my left eye has compensated for my right. Its doing this now more than ever. With both uncovered I can see, things get blurry now and then but generally I’m okay. Cover up my left eye and the words in front of me are blurry, I cannot even focus on my own hands! It’s times like these that I want to take the faulty parts of my body out, line them up and just yell at them. Realistically I know it’s not going to get me anywhere, I’ve also banned myself from googling my symptoms, I know it will just tell me I’m going to die, it’s one of the things google does best! I’d rather wait for hopefully a much more optimistic diagnosis from a Doctor.

So I’m keeping my fingers crossed that it’s not the Dystonia, and that it is a condition that they can easily treat! It would make a nice change.

Archive, July 2015

Cowering In The Cafe

Posted on July 8, 2015February 24, 2022 by dystoniaandme

Today is my first appointment with a new neurologist. I was meant to have another appointment with my wonderful consultant on the 29th of this month. I had a phone call the other day telling me he had left earlier than planned and that my appointment needed to be bumped up to 3:40pm today. So here I am now sat in the café of the hospital, coffee in hand, desperately trying to not freak out.

I brought one of my favourite books with me, Twilight, to help pass the time. However sitting here observing other patients around me, who are also in various states of unease, I can’t help but feel trapped. I know that my anxiety is mostly likely heightened by those around me, yet even knowing that doesn’t quiet the voices in my head. Will this be one of an endless list of consultants? Will he give me the time to ask my questions? Will he aggravate my CRPS?

My first thought is to leave, and hop on the next train home, and just put up with the increase in spasms. Crazy I know. I doubt I’d make it two months before I’d be back begging for my injections. I know that life without my botox is not worth it. It is not a life. It is ambulance trip after ambulance trip, and I won’t go back to it. So where does that leave me? It leaves me cowering over twilight determined to loose myself in its love story.

Botox makes the biggest difference to my life. But the administration of it terrifies me.

Archive, July 2012

Reflection

Posted on July 1, 2015February 24, 2022 by dystoniaandme

When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.

I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.

Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.

Archive, June 2015

Exploring Boundaries

Posted on June 16, 2015February 24, 2022 by dystoniaandme

Before I became ill I frequently had periods away from home. Whether that was holidays with friends, slumber nights with mates or living in halls at university during term time. Having independence rudely snatched away by Dystonia has been something I have had difficulty adjusting to. To a degree you could say I have refused to adjust to it and have enjoyed pushing my boundaries even if they landed me in hospital.

At times rolling over, bowing down to my alien and declaring its victory, has been tempting. However I’m a stubborn person, a trait that I am rather sure is one of the reasons I have come as far as I have in my battle against my many illnesses. Up until this weekend I had not spent a night away from my family (my mum has always slept at the hospital with me) due to the severity, complexity, and erratic nature of my health. Over the last year we have finally found a combination of medication and regular injections that has helped to manage my symptoms enough to give me a better quality of life. So I decided to embrace this new found stability (though I shall admit I still have some unexpected moments, and have almost hit my boyfriend on a few occasions), and spent the weekend in Manchester visiting two of my old flatmates.

My flatmates Emily and Rachel are very close to my heart. I see Rachel several times a month as we live seconds away from each other still, but Emily I haven’t seen since 2012 though we have kept in touch. They were both there for me in uni when my body started going downhill, and have spent numerous occasions in hospital with me at silly o’clock in the morning. To have my first time spent away from my family be with these two girls meant a lot to me. It was also quite reassuring as they have both done their nursing training, so I was in safe hands!

Today I am shattered, after a full on weekend with the girls, a subtle reminder that although it feels like no time has passed since we last were all together I’m slightly more fragile than I was back then.

Archive, June 2015

A sea of Drs

Posted on June 10, 2015February 24, 2022 by dystoniaandme

Today, as is usual for my six weekly routine, I went up to London to see my neurologist for my injections. I sat in the waiting room running through my list of questions with my mother “Whats the likely hood of the injections making my CRPS worse again? How likely am I to pass on HLA-DRB1 type Dystonia?” etc. The patient before me stumbled back out towards us all a flutter mumbling to her partner how she could not believe the Dr was leaving. The importance of my questions vanished. My neuro, my glimmer of light in a sea of Drs who drive me to the ends of my wit and leave me wanting to throttle them, leaving? I was vaguely aware of my mum pointing out not to get emotional until he had confirmed what I had overheard.

Sadly my neurologist is moving to another hospital where they do not run a botox clinic. He has asked that I email him regular updates, and has said that if things ever take a turn for a worse I just have to ask for a referral to him and he will see me. All this is extremely sweet and reassuring. I’d like to say I smiled and congratulated him, but if I’m honest I cried…a lot. It may seem like a small thing having to transfer too a new neurologist but when I first became ill I had several absolutely hideous neurologist who dismissed my symptoms. They blamed them on stress and my history of abuse, they refused to listen when I pointed out that I had become ill at a point in my life when I was the happiest I had ever been and had moved on from my past. My neurologist was the first to take me seriously and help me. I’m terrified of being handed over to another heinous consultant.

I have one more appointment with my Dr before he leaves, which will give me an opportunity to thank him (without crying this time) for all that he has done for me. After that it will be the start of a new chapter, hopefully one just as positive.

Archive, May 2015

Adjusting to Dystonia

Posted on May 6, 2015February 24, 2022 by dystoniaandme

When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.

Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.

I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.

I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.

I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.

To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare