Today marks three years since my life got a good shake up as my Dystonia alien made its presence known. So much has happened over the last few years that it’s hard to keep track, I’ve had a handful of operations, countless x-rays, far too many ambulance trips, and appointment after appointment with varying Consultants. I have also gone from being reliant on a wheelchair fulltime, to being able to walk with the aids of splints!
It has been an incredibly emotional journey, and I think that’s a naturel response to everything that’s happened. I’m finally at a place in my life where I feel like I am climbing the mountain that is Dystonia, instead of tumbling down it. I still have days like today, where it’s more like I am stubbornly camped out on it, refusing to fall. This morning I woke with my jaw in spasm, and my neck spasming on and off. So naturally I have spent a section of this afternoon lying on my living room floor, as the support that position gave my neck and back was the only way I felt comfortable. A year ago doing this would probably have left me feeling annoyed that I had resorted to doing it, today I was simply laughing, though maybe I am simply losing the plot.
Battling this condition has become second nature, nowadays I always have medication on me, and sometimes there’s even a TENs machine in my handbag. It surprises me how quickly Benedict has become accepted into everyday life without a second thought. This is a bittersweet realisation. It’s fantastic because it shows we are managing, that we are not drowning under the pressure the condition puts upon us. However a part of me feels sad that it has become so second nature, simply because who wants it to be part of their routine to remember to take one of their many pills or injections?
I’ve always kept score against Benedict. I think this year I finally got even.
Oromandibular Dystonia was one of my first symptoms that I suffered from before the Dystonia became generalised in 2012. Working on a trial and error basis with my Neurologist at the time we tested which Botox routine would best work for me, as it was clear 12 weeks was too long a stretch. Eventually we found the magic number, 6. Since then I have had my injections every six weeks and it has only been on the rare occasion that I have had to deal with my jaw spasming.
Jaw spasms. Two little words, yet they strike so much fear in me. The small spasms at best are uncomfortable, the extreme ones dislocate my jaw and cause seizures. My little alien loves causing spasms that leave me crying, clutching at my face as it contorts. In all honesty I couldn’t tell you why I grab my face. It’s an automatic response, as if a small part of me believes that if I clutch hard enough or push in the right direction, the pain might all go away. A child’s belief really, but one I find myself immersed in every time.
You would think that after almost three years of Benedict pulling my body this way and that, that I would no longer feel embarrassed by the teething tummy I resort to using to help prevent my upper teeth digging into my gums during a spasm, that I would no longer feel humiliated by the fact that I have no control over the majority of my body. I deal with the embarrassment better than I used to. I now force myself to carry on with my life and go out when I’m spasming, whereas previously I’d have shut myself away.
I spent Sunday with my boyfriend, it was the first time he had seen my facial spasms. He was great, and helped me medicate myself. At first I dealt with it fine, but eventually as the day wore on and I got tired, the spasms got worse until I resorted to using the teething dummy. I’ve only met his family a few times, so my embarrassment levels sky rocketed at this point. It’s not how I want them to see me, though I know that for them to be aware of my condition is a positive. What 22year old wants her boyfriend’s mum to see her with a dummy?! These are all qualms I need to get over, and with time I shall do.
I have sent my old neurologist an email informing him of my rather disappointing appointment with my new neuro. I am hoping that he will be able to speak to my current neurologist, so that he will agree to do six weekly injections. It may be a long shot, but it’s getting hard to hold my head up as well now. My next round of injections is not until the 12 August, so until then my dummy and TENS machine are my best bet.
Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.
I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!
I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.
Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.
On Tuesday I went up to London to see my consultant, I went armed with a notepad full of questions. I must say that I was extremely pleased with how the appointment went. I felt that my consultant listened to all of my concerns and really wanted to help me.
After explaining to my consultant all of my new symptoms and how they have resulted in an increase of Non Epileptic Seizures due to the pain, my consultant had a couple of ideas. First of all, after demonstrating to him how my neck spasms (it goes down towards my right shoulder, whilst rotating left, so I am in a sort of diagonally skywards position), he decided to administer Botox to my neck.
He administered the first lot of injections to my jaw to help relieve my Ormandibular Dystonia, this was relatively painless. He then went onto my neck. I expected this to be fairly painless as well. I was wrong. It was painful, I feel sorry for my mums poor fingers that I was already squeezing as I really do not like needles that are aimed at me. However I would rather have a couple of seconds of discomfort than hours of a hideous neck spasm.
My consultants second idea, is to introduce Clonzepam into my medication cocktail. At first I shall only take it when I think I am about to have a seizure. If that does not work then I shall start taking it nightly. His theory is that when I am in severe pain, my body goes into fight or flight mode and my bodies way of fleeing is by going into a Non Epileptic Seizure, therefore the medication should prevent my body from feeling like it has to fight or flee.
We discussed the role of dopamine, and he feels that my Dystonia is not dopa-responsive, so does not want to do a trial of levadope. Whilst this is disappointing, I can understand why he feels this, I know that I was only hoping I could try it, so that if did work I would be able to return to university in September. However I am not totally giving up on this idea. From the way my consultant spoke I was given the impression that many treatment avenues are closed for me because of the Non Epileptic Attacks. I am hoping that if the Clonzepam does its role right and stops them, then my Dystonia will be able to viewed in a light that is not tainted by them, it is at that point that I shall bringing up trying Levadope again.
For now I am going to sit back and count down the days to April 18th, when my riding lessons start-up again. I cannot wait to get back to it, its my happy place.
I am seriously fed up with and disgusted by the treatment I receive from the medical profession! Even my GP, who is usually in my good books, has appalled me. Since 2:45pm yesterday afternoon my jaw has been clamped shut and deviated. I cannot eat, drink or even take my medication and have not done so since that time yesterday! We asked my GP to do a home visit, and after feeling my pulse and stomach he left. He claimed that he was sure my jaw would go back eventually and that he did not know what to suggest.
I know that eventually my jaw will go back. Eventually being the key word. We do not know how long it will take for my jaw to EVENTUALLY go back. I have not had a drink of water or taken any medication in almost 27 hours now. How long do they expect me to go without fluid or medication? Surly the logical thing to do is to admit me into hospital put an IV and administer me fluids, my meds and muscle relaxants/pain relief???
I do not understand why I should have to accept and put up with such disgusting treatment! I am disgusted and highly irritated!
This morning pain has slowly been spreading down from my TMJ area into my jaw. I had done my best to ignore the pain, distracting myself with getting things ready for tomorrows hospital appointment (a non dystonia related one). However the lack of attention I was paying, seems to have seriously offended Benedict. To punish me, he has chosen the most painful part of me and decided to twist and pull it in as many ways as he can possibly find.
The right side of my face/lips has been pulled diagonally upwards and outwards. Consequently my right eye has been forced shut and it look like I am trying to bear half of my teeth. I must admit, if I was trying to scare someone away by bearing my teeth this spasm would do a very good job. The left half of my face/lips has been pulled diagonally downwards, and the whole of my jaw has been shoved to the left as well. I feel like my face is going to rip in two and my jaw is going to dislocate!! It is disappointing that despite having Botox not that long ago, Benedict is already able to manipulate my jaw. I have at least 4 weeks to go, if not more, before I can have any-more Botox injected.
Having Dystonia in any part of you body is a horrific thing. However now, in this moment of time, I would rather have my hand or my foot go into spasm. Whilst they are still ridiculously painful, I find them a hell of a lot easier to deal with. With the way Benedict seems to be playing with me today, I am sure that he will find some twisted way to add my wish to today’s neurological games.
I am refusing to let this spasm get the best of me though! I am going to enjoy today’s rugby match – Come on Scotland – I am going to have a nice glass of wine or Disaronno, even if I have to drink it through a straw, and I am going to relax. I am hoping that my pain medications kick in soon! Before I do anything else today I am going to meditate, as I often find this to be a very helpful way to help keep myself calm and to put off any unwelcome seizure.
The last few days have been rather interesting and positive. We have upped my Gabapentin even more, so that I am now taking 900mg three times a day. The reason for upping was a) to try to counter-act the tremors that had started in my leg, arm and head, b) I was intrigued to see if an increase dose would help enable my attempts to get back the ability of walking I had before the unfortunate incident on New Years day. I find that when it comes to increasing my does of Gabapentin, it is necessary to do this in baby steps. I am lucky that the only side effects this particular medication causes me, is when we increase the does, and even then these effects only last 24-48 hours.I find that an increase in the does, no matter how small, turns me into an irrational weeping wreck! I feel extremely sorry for people who encounter me during this. I am not going to up it any more for a while, as I do not want to get to the highest dosage and then find that it is not giving me any more benefits than the original dosage had. I do think that whilst the increased dose has not stopped these tremors, it has decreased them significantly, which is a huge relief! I have also received a letter from Surgical Orthotic’s with a date to seem them! I am hoping they will make me a brace to help me deal with the Dystonia that is affecting my leg! I am really looking forward to this appointment!
As many of you know, I had my last lot of Botox treatment for Ormandibular Dystonia back in January (on the 15th I think). Previously Botox has worked amazingly well for me, which led me to be rather naïve and presume that this would always be the case, or if did start to be less effective it would be later down the line after a few years of treatment. However my last treatment course only lasted 8 weeks, and this course seems to be heading the same way. I think it has been around 5 weeks since the injections and yet my little Dystonia alien is already trying its best to play with my jaw. Yesterday morning, just eating my breakfast set my jaw off into a spasm that caused the jaw to physically deviated (I am hoping this was just a one-off). Within seconds I went into one of my Non Epileptic Seizures, and then a few moments later I had one of my ‘silent’ Non Epileptic Seizures.
I have made a little of note of this, so that I can talk to my Consultant Neurologist about how quickly the Botox is wearing off. I know from his letters that he injects a lot less than my maxiofacial Consultant did, so I am going to ask if an increase in dosage could be considered, or if he can suggest anything else that we can do.
Last night I attended my pain support/research group, which as usual was a bundle of laughs! I entered feeling very stressed due to the fact that I had my emotional imbalance from the Gabapentin dosage increase going on and the cold had set a spasm and tremor off in my right arm/ hand and my head. However by the end of it I felt full of energy, was laughing hysterically and was so relaxed. I even lowered myself out of my wheelchair onto the floor and did all the stretching exercises and partner exercises with them. This support/research group really does do me the world of good!
A few weeks ago, I decided that I wanted to lose some weight, get fit and just generally try to keep myself healthy. A friend, who also has Dystonia, recommend finding myself a Personal Trainer, so I rung around all the gyms in my local area explaining what Dystonia was and that I also suffered from Non Epileptic Seizures. Many of them literally freaked when I started explaining it to them, which I can complete understand, however I eventually found someone who was prepared to take on my neurologically faulty body!
After meeting him on Monday we decided it would be best do sessions from my home, he then came round to assess my house and what I was able to do today. I must admit I was amazed at how well my body behaved!!! My arm had the odd moment, as did my eyes, but overall it was great. I was able to do so much more than I had originally expected to be possible.
Things are really looking up at the moment! I am adjusting to this ‘new life’ and learning new ways to approach things. I am slowly building confidence back up in myself, and don’t get out of bed everyday terrified of my body. Instead I get up with a can do attitude, accepting that my little Dystonia alien may make things difficult for me, but they are not impossible!!!
Lastly, a massive thank-you to everyone who voted for me in the WEGO Health awards. I was up for three awards, however I have not made it through to the finals, but there is always next year. It meant so much to me that so many of you nominated me!!! So Thank-you!!!
Yesterday my body was seemingly well-behaved. The only time it got irritated was when I went out for an hour or so, and my foot really did not want to be put in my shoe, and my eyes went blind a few times due to the lighting. However all in all, I found this to be an extremely positive and promising day.
As I was still feeling shattered after the busy week I had had, I decided it would be best to go to bed early. Meaning that when I went to bed, I would actually go to sleep and not pick up Harry Potter (I am rereading the series for what must be the 40th time) and read for hours. My little Dystonia alien, Benedict, however had other plans for me. I was just beginning to drift off to sleep when I felt the familiar tightening sensation in my leg and foot. I decided to ignore this and carried on trying to get to sleep. Benedict, unhappy that he had not managed to grab my attention, then decided to bend my foot as far back as it could possibly go. This roused me, however I tried to stay calm, and implemented my breathing exercises from my meditation CD. My leg then started doing two rather painful movements. It seemed to be trying to rotate so it was completely back to front, whilst going slightly upwards and pulling outwards, as if trying to go in the air whilst attempting to dislocate itself. This completely woke me up, with all hope of sleep gone, I flipped myself over, so that I was lying on my stomach, to try to counteract the spasm by forcing it into the mattress. I then started doing distraction techniques, such as making my good leg do movements, reciting lyrics in my head etc. In the end I switched on my Ipod, and just focused on my breathing. I did this to not only to keep me calm, but also to try and lull my body into a state of relaxation.
It was 3 am by the time the spasms relaxed, it only took 5 long hours, and I was finally allowed to drift off to sleep. Whilst this was an irritating experience, as I like and need my sleep, it was also a positive one. I manage to cope with it all without panicking. I kept calm, and did all the distraction techniques I knew, and tried each one for a fair amount of time, before allowing myself to give in and just let the spasm run its course.
Today has been a fairly good day. My Dystonia had not been that bad, so I am rather happy. I did not have my usual soup for dinner today as I am trying to up my protein intake, so I had mashed up fish fingers, mashed potato and beans instead. Whilst this was nice and extremely filling, it sadly set my jaw off. Recently when my jaw spasms, it has just been my lips going – thanks to the Botox treatment. However this evening my jaw also deviated to the left when it went into spasm. Thankfully the deviation was nowhere near as extreme as it has been before. I am hoping that this deviation is a fluke, as my last lot of Botox treatment was only administered about 5 weeks ago, so I still have 7 more weeks to go before I can have any more.
I am hoping for a quiet and relaxed day tomorrow. Which will be full of positivity!
Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.
My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!
My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are triggered by extreme pain.
Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!! Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!
Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!
Yesterday evening I finally received an email from my consultant saying he would see me next Tuesday at 1pm! I am so happy, it will be such a relief to have the Botox done, so that my Ormandibular Dystonia will not cause me any pain for a few months. Another bonus is that when the jaw pain eases off, so do my Non Epileptic Seizures! I am going to have a word with him while I am there, about what I do when the Botox wears off next time, as I find it unacceptable to have to battle for so long to get seen!
Over the past couple of months I have read a lot of articles to do with meditation helping with Dystonia. In most cases stress aggravates Dystonia, so doctors often advise their patients to try to live a ‘calm and stress free life’. This is rather ironic, considering that Dystonia causes stress itself due to the pain it inflicts and its life changing nature. This is where meditation comes in, particularly Mindful Meditation. It is all about sitting or lying down comfortably (I know this is often the hard bit to do for Dystonia Sufferers) and trying to focus on the present moment, feeling calm and relaxed.
When I first heard about Mindful Meditation, I was not sold by it, I was very dubious as it seemed a bit ‘fluffy’. However after reading more into it and reading claims that it really did help keep stress levels down which in turn calmed Dystonia down a bit, I found myself thinking why not. I am at the point where I shall try anything, if it means that I can have some sort of slight relief from my Dystonia.
I ended up scouring Amazon for books on meditation, Mindful meditation in particular, until I found three, that not only looked like what I wanted, but had a lot of positive reviews as well. I brought Living well with Pain and illness by Vidyamala Burch, Relaxation for Dummies (also comes with a fab CD to guide you through your meditation) and Heal Yourself by Anne Jones (I am just about to start reading this one).
After spending a few days reading through Living well with Pain and Illness, and Relaxation for Dummies, I decided to try meditating for the first time last night. I put on the CD provided to help guide me through it. As it was my first time meditating, I chose to do the shortest one first. I must admit that I was pleasantly surprised. I had started the meditation in a lot of pain due to my jaw spasm, and was feeling rather stressed over it. However by the end of it I was feeling fairly relaxed. I was still in a lot pain, but I was not stressing as much over it.
Research shows that after a few weeks of doing mindful meditation, that the brain actually shows a physical difference when scanned The majority of scans show the stress section of the brain has actually shrunk, and the positivity section was lit up/grown. I am going to attempt to meditate twice a day for two months. At the beginning and end of the meditation, I am going to document how I feel and how my dystonia is. Then at the end of these two months I will compare how I am at the end of the ‘experiment’ to the beginning of it. It shall be an interesting and hopefully positive experience.
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