I had St Vitus Dance at 18 Years Old // Sydenham's Chorea / My Diagnosis
Hello everybody! = To say that the past few months weeks have been eventful and an emotional and medical roller coaster would be a mere understatement. With that, my Easter break of what would normally be a fortnight of as much revision, chocolate and productivity as you possibly can, became a fortnight of medical mystery and a 2 week admission into a nearby specialist Neurology ward to try and suss out what was causing my mysterious behaviour – it was a lot less scary and concerning than it sounds, I promise. Because of what still seems to be a very strange medical experience; I thought that I would document my experience here on my beauty and lifestyle blog and add to this diary as time goes on and with that, I apologise in advance if the diary entries aren’t quite as cohesive as I would like however I'd love to record my experiences only in order to help Neurologists.
FYI – Because I am not a doctor and may be talking utter garbage, do take what I’m saying with a pinch of salt but of course if you have any questions do get in touch.
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Early 2015 -- Tell tale signs?
A few months ago, following the end of February half term, the start of lent and therefore a self induced chocolate ban, my mood swings became more frequent, I was hysterical, if I wasn’t crying and hyperventilating from that, I was getting frustrated by both myself and my Sixth Form teachers and lessons; nothing necessarily caused by them but I became more and more impatient and frustrated when sat in certain lessons and so, very much out of character, I began unintentionally being uncooperative or in one instance, storming out of the lesson in an emotional crying ‘meltdown’.
Initially, however, we’d passed off such teary behaviour as due to an unfortunate combination of A Level stress (taking Maths, History and Geography ) and hormones.
Hence, having described such to my local GP I decided to start taking the pill (Microgynon 30) to ease the hormones in time for my A2 Exams and hopefully ease the moodswings prior to the stressful exam period.
Soon after taking this, or otherwise very coincidently, symptoms of what , again, I’d passed off myself as exam stress or hormones, earlier in the year became a lot harder to hide / disguise while at sixth form. Though would come and go, mostly, as quickly as they came – most mistaking such as drunken behaviour – or questionable weird / unusual for a usually focused ‘nerdy’ Year 13 as I couldn’t keep still or focus, and was wittering away and hardly making sense.
The first 17 days of said Microgynon30 ( Mid- March) only appeared to make my weird behaviour more frequent:-
By weird behaviour, I started to show symptoms of tutting, deep sighing, huffing, clicking, slurred speech. At first it felt as if I had gotten into a bad habit with the traits above, and although I was conscious I was doing these, I often couldn’t help myself, much like a type of mild Tourette’s or ticking. I also started to, often unaware, start pulling faces more frequently, grimacing with my face, or not often realising that I could be staring into space for long periods doing this.
As time went on, I got more and more frustrated when talking to both my family and friends and often gave up mid sentence because it was difficult to say what I wanted to as my words sounded slurred, drunk or as if I had a lisp. I also started to speak even faster in order to try and get my point heard, though again this became exhausting.
For those of you studying A Levels, you’ll understand how much effort, work and time you put in and how little sleep you get. Since coming out of hospital and having the chance to sleep in for how long as you like, I have since realized that the more tired I am , the worse my side effects [[ Clumsiness, emotional crying, left hand being unable to write and looking, walking and feeling drunk ]] seem to get.
The most obvious and frustrating of the early symptoms was loss of (complete) control of my left hand. As I write with my left hand, this was the most frustrating part as, although my writing has never been neat, it soon became illegible and much like a pre schoolers not an A level students. It also seemed to have a mind of its own and do what I can only describe as a reverse Mexican wave that I couldn’t stop. If I tried to type, with the left hand resting nearby, or with my right hand or alternating single letters at a time ( think grand-dad typing) the left would knock it off its course, very frustrating at the time as this was the worst the night before my A2 History coursework was due.
By the next day, and with 3 days to go before the Easter break, my mum booked a doctors appointment for the Monday morning. By this point I was struggling to walk or get dressed by myself and couldn’t keep still waiting to see my doctor. I was struggling to keep eye contact or sit still so was prescribed with some tablets for ‘agitation’ Sertraline. Despite already sleeping in until 11 that day, I went back to sleep until 7 in the evening before eating dinner and going back to bed.
By Tuesday, I was acting like a drunken infant, struggling to stand still or walk with skipping or running in my intending direction as I felt full of excess energy yet also was mentally exhausted. When trying to get to sleep for the next few evenings, it took much longer and was only when I was being held still that I finally got to rest as I kept flinging my arms and legs, especially on my left side.
On the Wednesday afternoon I could not sit up or still no matter how much I tried, holding a cup, food or not hitting or kicking somebody in the process seemed so difficult and more frustrating that I couldn’t explain my actions.
By Wednesday evening, (APRIL 1st), in hope that I could ‘get it out of my system’ or tire myself out I opted to swimming instead of a walk, which was an experience in itself as my left side acted like a flipper every time I attempted breaststroke and spun me round in the process.
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APRIL 2015 + Easter Holidays 2015
[[April 2nd – First trip to local hospital PAU ward, Overnight Stay ]]After numerous phone calls to the doctors, and a home visit, we finally got the referral to the Local A&E where after a long and exhausting overnight stay and a chest X ray, we were given the good news of a spare bed at North Staffs, a big sigh of relief and a very good ‘good Friday’.
((April 3rd -Bed on a specialist ward and promise of an MRI and answers to unanswered questions.))
Easter Holidays, April 12th 2015 <
>MRI scans also showed no cause for concern
>ECG showed no cause for concern
I was prescribed a course of controlled release Epilim Chrono 500 tablets and a 6 week wait for my last bloods to be sent back. The only ‘cure’ or treatment in the meantime is sleep and rest which is frustrating, in hope that the St Vitus dance goes of its own accord, especially as its believed to have been caused by a staphylococcus virus ( as a result of a throat infection earlier in the year that I was unaware that I had) that is now unable to be traced.
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MAY 2015- JUNE 2015
The main thing I want to note is that I am still on my medication for Epilepsy in order to aid my walking, coordination and suppress my left movements. The strength of medication has also remained the same throughout meaning that I take my tablets at around 7.30am in the morning and around 7.30-8.30pm at night. For the most part, this has certainly helped my earlier symptoms and has meant that I have ( finally! ) been able to go back to work as I was before which I am pleased and relieved about as things may hopefully be returning to ‘normal’ again and regaining my independence.
My A Level exams, however, are postponed / out of the picture at the moment until September, which at least has relieved that stress for now, despite not being an ideal situation.
More recently, my symptoms appear most obvious, to myself anyway, in the early evenings, especially when ‘hangry’ or when the effects of my morning tablet appears to be wearing off. The symptoms nowadays tend to be my speech = where my jaw on the left side tends to lock and makes getting my words out, a task in itself = or pulling faces involuntarily. My patience also gets shorter and shorter by this stage and shakiness in my hands means that holding a pen, cutlery or glass becomes more of a conscious effort for a short period unless I rest. My walking can also become robotic or on my toes if I am aware I need my tablet at night – I must sound like an addict awaiting their evening fix; that I can assure you otherwise as is not the case.
Though I have had a follow up neuro- physio appointment who seemed to think that my walking and coordination was okay and not of concern, I am still yet to see my consultant from N.Staffs for my follow up appointment and blood test results though I am hoping he will see a vast improvement in my condition now to how I was over Easter.
[[Last Updated ; June 1st ]]
June / July 2015
Hello again! Since my last update we have had an assortment of British weather. From scorching 35 degree heat to thunder storms and bright lightening, this month, alongside trying to power through with my Sydenham’s chorea , I have also been suffering from Hayfever and insect bites, so prior to a visit to my GP at the start of July, I had been using Prevalin and Piriton to ease my hayfever symptoms. In conjunction with my Epilim (of which I am still taking 500mg 2 times a day), at times was exhausting and made my facial twitching, when tired, return - often without me realising.
Writing with my left hand remains to be a chore as it soon becomes illegible and frustrating, however I have noticed as the days and weeks go on, a little practice and concentration goes a long way. My hand, mostly my right, will also show a tremor and shaking from time to time though often this is nearest to my evening meal and soon goes.
The only other ‘symptom’ I have noticed is on the right side of my tongue. In late march, and also while in hospital, it felt as if I had blisters on the edges of my tongue ( much like if I had eaten something too hot and had burnt it , despite there being no visible evidence. For a week in July, though my tongue doesn’t feel blistered, the right side of my tongue felt as if I had bitten it and remained sore for a few days, though this has since gone.
As ever, it appears that my symptoms , though not apparent to most, reappear when I’m tired or have over-exerted myself – such as cycling in the 30 degree heat in Majorca – though I was able to spend a whole evening at my year 13 prom dancing in my heels which, considering I hadn’t worn heels properly since January ( at risk of doing more harm than good), seemed promising.
Going to work, and driving, is also becoming more natural again and I am less self-conscious of my walking or general behaviour and I have been able to start living life as a ‘normal’ 18 year old - though minus the alcohol.
I have since been to the GP’s to order a reduced prescription of my Epilim ( 2x 300mg a day for a 14 day course ) before cutting it out completely as advised by my hospital consultant. All being well, I should continue to see a positive improvement in my health over the next few weeks and months and hopefully these improvements shall not backtrack when I come off my medication.
[[ Last Updated 17th July 2015]]
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