Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘spasms’

Summer, Spasms & Studies

Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.

When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.

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Stefan’s first trip to Oxford Brookes University

At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.

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Keeping the pram attached

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Diagnosing Dystonia

Reaching a point of diagnosis in too many cases is a long and hard road to travel down. Despite being the third most common movement disorder there is an astounding lack of knowledge in the medical community. The lucky minority may get a diagnosis in months, but for most it takes years, sometimes decades.

In a way I was lucky that I had heard the word Dystonia once before, though I had no appreciation of its signifinance. Looking back at my medical history I had symptoms long before I realised there was anything potentially wrong. In 2008/2009 I developed severe neck spasms, however this kicked off after a rather spectacular fall from a horse which resulted in me landing on my head, so it was easy to put the spasms down to this. Then in 2010 I experienced for the first time Oromandibular Dystonia. My jaw dramatically deviated for a painful 3 months before we found a maxiofacial consultant surgeon who knew what was wrong.  I was informed that a quick operation where my tempromandibular joint (TMJ) would be washed out and botox administered would solve the problem. I never questioned this and presumed that Dystonia must be some sort of infection. This belief was reaffirmed by the fact that the operation was a success. Shortly after this  I developed arm and back spasms, but for several years I shook these off as simply violent shivers.

In the summer of 2012 I was coming to an end of my first year of midwifery training. For a couple of days I’d had ear ache and swelling and had planned to visit the GP but was in no rush to do so. I now recognise this as a sign of whenever my jaw is going to play up. That weekend I’d popped home to visit my family,  whilst relaxing in the garden with them my jaw started to spasm and once again deviate. My mum offered to drive me to the local hospital which I declined, convinced it was just an infection.

My GP that Monday was horrified. After one look at me I was on the way to the hospital with her convinced I had had a stroke. Countless blood tests and xrays were taken, and eventually a consultant appeared. He was the top bod in his area and had an ego to match. Due to his station I didn’t question his plan to wire my jaw shut. Less than 24 hours after the operation my flatmates were rushing my back to hospital, the spasms had returned with vengeance, breaking every wire in my mouth and dislocating my jaw. From that moment onwards the consultant dodged me. Refusing to see me or remove the wires which were ripping my mouth apart.

It took a further 3 months to find a surgeon willing and able to help me. Sitting in front of the surgeon who had treated me back in 2010 he was apologetic for the state I was in. By this point we had started researching Dystonia as I was now wheelchair bound and unable to brush my hair or feed myself.  

I often wonder whether 5 years on I would have received my diagnosis if I had never met my neuro. The Dystonia Society UK have a wealth of information that has been invaluable. It’s enabled me to ask for treatment and referrals appropriate for my conditions and have informed conversations with doctors. 

I never expected to still be fighting for correct care. The current hospital I am in would far rather blame my symptoms on past traumas than acknowledge the existence of Dystona. It makes me thankful daily that I have a neurologist willing to my corner.

What Causes Dystonia? 

The exact cause as to why people develop Dystonia is currently unknown for the majority of people. For a small group of people it occurs due to a gene mutation, brain injury, infection, secondary disorder, or as a result of medication.  Pinning down the root of the condition is something that research is currently focusing on.

So far we know that for some unidentified reason there is an issue with a section of the brain called the Basal Ganglia. It is known that this region of the brain enhances activity in the motor cortex which controls the agonist and antagonist muscles.  In a healthy person  when they make a movement the way the muscles contract and relax is coordinated and harmonious. However with Dystonia there is a deficient inhibition in the antagonist muscles which can result in both sets of muscles contracting simultaneously. It’s not clear why this happens. 

The Dystonia Society  UK have a fantastic wealth of information on the ins and outs of Dystonia, which I would really recommend reading to find out more information on the condition. For now it seems unlikely that any one particular theory will be proven right in the immediate future,  so I shall continue to personify my Dystonia into a cheeky little alien, it’s a far more entertaining cause.

Dystonia Awareness Week 2017

It’s currently the 2017 Dystonia Awareness Week in the United Kingdom. Usually I would have kicked off awareness week on time (yesterday) with a blog post, and as has become tradition, would have been sporting some lovely green streaks in my hair.  Instead I’m currently in the hospital due to a flare up of my Dystonia; at least the timing is appropriate and they’ve given me some sexy green slipper socks (so I’m squeezing the go green awareness campaign in).

Currently The Dystonia Society UK estimates that around 70,000 people are affected by the condition, making it the third most common movement disorder in the UK, however it’s thought that the affected number of people affected may be far higher due to a lack of knowledge within the profession affecting levels of correct diagnosis. Dystonia presents in a vast amount of varying ways across all age groups which adds to the complications when it comes to diagnosing patients.

Only a few decades ago it was thought that Dystonia was caused by psychogenic roots, thankfully through giant leaps forwards in research we now know that this isn’t the case; many people will never know what triggered their condition, whilst others now know that their Dystonia is caused by either a genetic mutation or brain trauma. Sadly despite the leaps in understanding of the condition many medical professionals still mistake this as psychogenic condition and therefore do not treat the patient appropriately. 

This is one of the reasons that awareness week is so vital,  without awareness and fund rasing events research into causes and treatment options comes to a halt. At this moment in time there is no known cure for Dystonia,  but treatment can have a significant impact in a sufferers quality of life. 

Though out awareness week I’m aiming to blog daily, however this may alter depending on how well I am.

Practically Complicated In Every Way

Its been a few weeks since I last posted, and it’s mainly because I don’t have a clue where to begin. My body has been doing what it does best and excelling at being complicated resulting in very confused Doctors trying to figure out what to do with me; I’ll let you know if they ever figure that one out!

Functional is how I would describe myself at the moment. In that I can get up and dressed but it’s causing a lot of pain, and then that’s my spoons used up for the day.  I’m pretty sure sleep would make me feel a thousand times better, but between my iron tablets (I’m extremely anaemic) causing severe sickness morning and evening, spasms, palpations and generalised pain, I have found that I am lucky to get three hours of sleep a night. As most people with chronic illness know being fatigued makes everything harder and it all seems a lot worse than it probably is. This has resulted in tears quite regularly recently simply because I don’t quite know what to do to help myself.

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I’m currently 33 week pregnant, so there’s not long left to go. It reassures me to know that once baby is here I can go back on my Botox injections and safely take stronger painkillers and muscle relaxants again. Whilst I’m keeping my fingers crossed I’ll be able to avoid going back on high doses of these, it’s comforting to know that I will be able to manage my pain far better.

I’ve been in bed for three hours now, tossing and turning. My left shoulder is agony, and I have horrific nerve pain in that arm and over my right rib. I feel rather emotional, and wishing for the ever-elusive magic wand to be waved to take the pain away. I know that this flare up in the long run will be worth it, and once the baby is here I’ll forget about it. But right now, coping with a flare up of my current conditions and a flare up of my new symptoms is making things feel pretty tough.

I’m hoping that whacking my TENS unit on full and using my heat packs will help me get enough sleep tonight that tomorrow is better.

Dystonia and Pregnancy So Far

Each of my conditions have reacted differently to my pregnancy and some new complications with my body have also arisen. So I’ve decided to incorporate these experiences into my blog with each condition being addressed in its own post as they are all unique and confusing in their own way.

At four weeks, pregnant my neurologist told me I needed to come off all of my medication due to the risks they presented to the baby as he developed. At that time, I was having six weekly Botox injections to my eyes, jaw, neck, and left shoulder, and I was on a range of oral medications including Gabapentin, Tramadol, Cetirizine, Topiramate, Dantrolene and more. My dosage for each of these medications were not particularly low which meant coming off them was a bit a of worry, luckily only the Gabapentin caused withdrawal symptoms (something I knew to expect after having the dosage adjusted several times over the years). I’m not sure if you’ve experienced withdrawal from Gabapentin, so picture uncontrollable weepiness because a cloud looks so beautiful, paranoia to the point you’re convinced that the shadow of the tree you just walked past is going to murder you and hideous night sweats. It’s not a walk in the park by any means but thankfully these symptoms didn’t last too long.

My main concern was how I would cope without Botox and my muscle relaxant Dantrolene. Over the last four and a half years I have been reliant on my six weekly Botox to keep me resembling an almost functional person, and Dantrolene was the only muscle relaxant that I found effective and can stay awake on for more than 5 minutes at a time. After expressing my concerns to my neuro he reassured me that I may not find these 9 months as terrifying as I expected, as some women reported experiencing an improvement in their symptoms in pregnancy. I wanted to believe him badly, any improvement I would take in a heartbeat, but at the same time I found it extremely hard to believe that something as natural as pregnancy could offer me an improvement that medication was unable to provide. Now I bow down to the wonder that is pregnancy, I’m currently almost 6 months’ pregnant and unbelievably my Dystonia isn’t too bad.

For the first 12ish weeks I only had minor symptoms, which was a relief as my severe morning sickness (I was diagnosed with Hyperemesis Gravidarum) meant that I wasn’t by any means well enough to cope with any severe spasms. By week 14 however I was admitted to hospital after spending 24 hours with my jaw dislocated and in spasm, unable to eat or drink. In the end, I was in the hospital for a week whilst they attempted to figure out what to do with me; without fail several times a day a Dr would look at me and be shocked that my jaw was still dislocated. I think my let’s laugh through the pain attitude confused them further. Eventually, after my midwife got involved and advocated on my behalf (amazing woman!) my neuro agreed to administer botox to my jaw and restart me on a small dose of Gabapentin, which has allowed me to remain fairly normal with the exception of the odd spasm; but I’ll take the odd daily spasm over an agonising spasm that refuses completely to go away.

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Late November, day 5 in the hospital after being moved to maternity high dependency unit

Whilst my Dystonia is without a doubt very much present still, as it likes to remind me by leaving me functionally blind or distorting my jaw, I’m coping far better than I had ever imagined. I had truly expected to spend my pregnancy bed bound in hospital stuck on a feeding tube with irritable limbs, the fact that this hasn’t (touch wood) materialised feels like a miracle, especially as a feeding tube was at the start debated. If it could just stay like this for the remainder of the pregnancy I’ll thank my lucky stars.

So This Is Happening…

So, this is happening…Due May 2017.

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As some of you may remember, a couple of months ago I blogged that I was off all my medications and was learning to cope without them. Many of you noticed that I was very vague with my answers as to why myself and my neurologist had made the decision to do such a thing. After all, I’m normally complaining about my treatment being administered late. At the end of the summer I had the biggest surprise when we found out that we are expecting our little boy! Whilst very exciting, this meant a frank discussion with my neurologist about the available treatment options now open to pregnant me. There have been very limited studies done on the medications that I take for my varying conditions in relation to the safety of them in pregnancy, so a decision was made for me to come off of all my treatments and we would judge where to go from there.

I am extremely lucky to have a wonderful neuro who doesn’t mind me/my local hospital inundating him with emails and phone calls as my body plays its usual tricks. Although my body has been misbehaving with varying spasms and dislocations, the pregnancy itself has been progressing well. Due to having a whole host of conditions that are on the rare side of things, I have been under the care of a specialist maternity unit. It’s been fascinating seeing how they respond and their treatment suggestions; and very positive, as for a change they understand one or two of my medical conditions.

Despite weeks of horrendous 24/7 sickness, a spell in the hospital due to my Dystonia going on the rampage and a whirlwind of further hospital appointments as my body learns new tricks, I have continued with my university studies and plan on continuing into my 3rd and final year after the baby makes his appearance.(Thank Goodness for a uni with a fabulous disability team and amazingly supportive lecturers).

I’m looking forward to blogging about Dystonia and Me’s, and bumps adventures.

Dystonia Alien Rears Its Fearsome Head

Recently after seeing my neurologist a decision was made for me come off of the majority of my medications. It is not a decision that either of us made lightly but there was little choice in the matter. For the last four years, I have been completely reliant on a cocktail of medications and injections to simply make my day to day life manageable. It has taken years to find the right combination of medication and injection frequency, so taking a step away from all of this had been extremely frightening; I had no idea how my body would react or how I would cope. Whilst there was every possibility that in actual fact I would manage perfectly well, I was also painful aware of my medical history, of the years spent with weekly ambulance trips to the resus department. This is not something I ever want to repeat.

At first I was managing fine, the emotional ups and down that come with weaning yourself off of medication was nowhere near as bad as I had expected, and I had managed longer than 6 weeks without botox; which is frankly a miracle. However, over the last two weeks or so I started to worry, I put my symptoms down to an ongoing cold I’ve had for the last month. There was a familiar tugging sensation in my jaw, my eyes were slightly more aggravated than usual, and I was experiencing ‘violent shivers’. Before I was diagnosed in 2012, I always called my arm twitches ‘violent shivers’, it was my way of convincing myself there was nothing wrong. It’s funny how easy it is to fall back into bad habits.

This weekend my jaw has been particularly bad; it was deviating dramatically and starting to tremor. My only medication option was codeine, which left me feeling slightly spaced out but did nothing for the pain I was in. Since then my body has gone dramatically downhill. Last night my jaw spasmed, violent tremors followed, dislocations occurred and then my arm spasms joined in. I had forgotten how much pain all of this can inflict.

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last nights dystonic antics

After very little sleep and being no better this morning I arrived at my emergency doctors in the hope they could suggest anything to help. I generally judge how bad I am by the Drs reaction; she was appalled I had ended up in the state I am in and was lost as what to do.  So now on her instructions I am curled up in bed encase I have a seizure, I have emailed my neurologist in the hope he may contact me sooner rather than later, and I’m waiting for her to phone me back with an action plan. She had been debating trying to admit me in to hospital, and as much as I have my concerns with my local hospital due to previous experiences, I cannot help but feel that this is this best place for me as I can no longer eat and I haven’t successful managed a sip of water since early this morning.

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apparently I don’t need a working face

Fingers crossed things improve soon.

Happy 4th Birthday Blog

Can you believe that today is the fourth birthday of Dystonia and Me? It is astounding just how much difference another year makes. My battle with Dystonia and my other conditions is one that for a long time I have felt I was drowning in. It has seemed like a constant tug of war, desperately trying to stay on top of my symptoms. For many years it seemed to me as if my little alien was always ten points ahead of me, and I was treading water trying to regain my lost control and catch up. Today I can quiet firmly say I am miles ahead of my alien, I am now basking in the peace of coping.

I’m not saying that I don’t have my down days, there are plenty of days when my spasms, seizures and dislocations just seem too much. However, what I am achieving makes those days worth while. In the last year I’ve completed my first year of uni, managed to live a life so full that it’s been beyond my wildest expectations for myself, I have been nominated for an award, interviewed several times by the BBC Three Counties, and I have had a blog post censored (which is why if you’ve been looking for the last one you have been unable to find it). I’ll let you guess as to which one of those I am most proud of.

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When I started blogging it was to raise awareness of Dystonia, in a short period of time it has grown to encompass a whole host of conditions that I live with. In 2012 when I created Dystonia and Me, I had hoped a handful of people may read this site and learn something new that could have the potential to help others. I never expected this blog to become the lifeline that it is for myself. Blogging my experiences, good and bad, has enabled me to accept my complications and learn to love myself again. Through this blog I have come into contact with incredible people who I admire greatly.

If you had told me a year ago I would be writing this, I would have laughed. I was so caught up in my worries and excitement about starting uni that I never thought to think what could possibly lie ahead. Who knows what will happen in the next year!

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Would You Apologize For Shivering? Didn’t think so!

Every now and then I receive wonderful comments/emails/tweets from people expressing how reassuring it is to see me post pictures of my spasms. These messages often include phrasing such as “I don’t know how you do it, it’s very brave” and “I wish I had your confidence”. I don’t talk about this much, but when it comes to my spasms my normal confident self generally disappears. The stares in the streets, the whispers of “look at her face!” and people’s general ignorant remarks “Could you please stop or do it elsewhere” (usually in reference to my arm spasms) have caused me countless hours of upset. I don’t believe in wasting hours on being tearful over something I have no control over though, I hope the pictures below show that while hard, life as a spoonie can be fun.

               Does this splint blend in?  Laughter; the key to making the most of the spasm free moments!

In many ways I’m your stereotypical 23 year old, I take way to many selfies, own far too many shoes and grew up head over heels in love with books; a passion that has resulted in me wondering where to put them all now I’ve run out of shelves! I have all the insecurities that is normal of somebody my age: I am overweight, I do not care enough about fashion as I’d rather be comfy, and don’t even get me started on my complexion. It’s tiny insecurities that are perfectly normal but when combined with my spasms often results in self-deprecation. There are days when I can walk about not particularly worried about some of the smaller spasms I experience, and then there are days when I’m hyper aware and embarrassed when in public, not just because I need an aid such as my wheelchair or stick, but because my eyes are spasming causing functional blindness, and my jaw is contorting to the point of dislocation; this is all whilst my left arm is casually attacking anything in range.

When confronted by people asking me to refrain from spasms, I try to politely explain that it’s nothing I can control and apologize. But why should I. Should you apologize for shivering when cold? It’s a natural reaction that you would never dream of uttering apologies for. So why then should I issue out apologies for something that is just as natural. Sure, everybody and their friend may not experience it, but it’s my brain firing off incorrect signals that are just as natural as your shiver or yawn.

I live in pain every day and never know what to expect from my body. Yet people judge me for this. If all I manage to accomplish that day is a shower and pulling on a clean pair of pyjamas then who cares, all that matters is that I achieved it, other days I am capable of so much more. But just because I have had the energy and ability to carry out a task at that point in time, does not mean I will be capable of performing the same task five minutes later, let alone the next day.

I try to live every day ignoring the sideways glances and stage whispers, enjoying everything I am fortunate enough to experience. These days I try to capture my spasms on camera, as after all they are just as much a part of me as the functioning parts of my body. So when you are say I’m brave and ask how I cope the answer is quite simple. I’m not brave, I am stubborn, Dystonia and my host of other conditions will not stop me from living life. Coping is a different matter altogether. Some days it’s as easy as breathing, and laughing feels like the answer to everything. Other days curling up in my bed escaping into books where the words provide comfort and distraction is all I can do.

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Rocking my wheelchair!

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