Tag: Botulinum toxin

Posted in Archive, June 2014

Exasperated

Posted on by dystoniaandme

This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness.  On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.

When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.

I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.

I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.

 

Posted in Archive, May 2014

Generalised Dystonia

Posted on by dystoniaandme

Generalised Dystonia usually occurs in late childhood/early teens, it is unusual for it to start after the mid twenties have been reached. In the majority of cases symptoms will progress for about five years before stabilising. I was 19 when my Generalised Dystonia started, it started in my Jaw and then spread rather quickly. Though I had an episode of Oromandibular Dystonia back when I was 17.

There are several possible reasons why someone may develop Generalised Dystonia. In some cases it is referred to as Primary, this is when there is no identifiable cause other than genetic factors such as a mutation in the DYT1 gene. Secondary Dystonia is when there is an underlying cause for example another medical condition, stroke etc.  Dystonia can be inherited, there is a 30% chance of developing the condition if a person has the mutated gene. There are several other genes which can cause Primary Generalised Dystonia.

Treatment of Generalised Dystonia normally involves a combination of Botox injections and medication. I find a combination of muscle relaxants and six weekly injections, extremely helpful. Levodopa is usually trialled for around two months to see if the Dystonia is Dopamine responsive. Deep Brain Stimulation is also used to treat the condition and can make a huge impact to the sufferers quality of life. Selection for this however is done very carefully to make sure that the patient is likely to benefit from the treatment as the surgery obviously carries many risks.

Below is an image of one of full body spasms.

Posted in September

Cervical Dystonia

Posted on by dystoniaandme

Cervical Dystonia is when the spasms are in the neck, this can be quite painful and can result in awkward neck postures.Generally the spasms will cause the head to pull to one side, backwards or forwards. In my case my head pulls down towards my left shoulder but with a forward twist. I also have a no style tremor to my neck. It is the most common form of Dystonia and according to The Dystonia Society is currently estimated to affect around 18,000 people in the UK. Like most forms of Dystonia if it occurs in adulthood then it will hopefully remain in just that part of the body.

The most effective treatment for Cervical Dystonia at the moment is regular Botox injections, though how well this work varies from sufferer to sufferer. I receive regular Botox injections to both sides of my neck and it has had a massive impact and helps me keep my head fairly straight  whilst the Botox is working. Medications such as muscles relaxants can provide people with some relief as well. Pressure being applied to specific points around the neck and face in some people is beneficial but this is not the same for everyone.

This image demonstrates some of the positions the spasms can pull the head in to.

Posted in Archive, May 2014

Oromandibular Dystonia

Posted on by dystoniaandme

Oromandibular Dystonia affects the mouth area, this includes the tongue, jaw and lips. It is part of my Generalised Dystonia and I find it affects both my jaw and my tongue. I have often found myself in situations where I have found myself sounding like I am drunk because I am unable to pronounce my words due to the spasm going on in my tongue.

Oromandibular Dystonia often affects the sufferers ability to chew and speak. When my spasms are bad I find that I can only consume liquified foods and yoghurts, as the spasms that are taking place leave me unable to chew. Some people may just have Oromandibular Dystonia or they may have it with Blepharospasm (Eye Dystonia), or as part of Generalised Dystonia like myself. If it is a focal Dystonia (just on its own) then it normal appears between the ages of 40 and 70.

Oromandibular Dystonia was one of my first symptoms. I was at university, and to be honest I didn’t really think too much of it at first, but then when the spasms became extreme and caused my jaw to dislocate I began to realise just how much pain they could inflict. As there is no cure for Dystonia a combination of Botox injections and medications are used to manage it. I find Botox injections to be particularly effective at managing it. Botox seems to only work for around 5/6 weeks for me, luckily I have a very lovely neurologist who is willing to administer the injections every 6 weeks. This works fantastically well for me, as without this my jaw spasms are extreme. Some people find pressure points or chewing gum helpful in managing their symptoms.

I would highly recommend for anyone wanting to know more on the condition checking either out The Dystonia Society website http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia or The Dystonia Research Foundation http://dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/focal-dystonias/more-on-oromandibular-dystonia .

Posted in April 2014, Archive

Disappointed & Disheartened

Posted on by dystoniaandme

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

Posted in Archive, March 2014

Oromandibular Dystonia

Posted on by dystoniaandme

Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.

However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.

It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.

It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!

Posted in Archive, February 2014

Positive Neurology Appointment

Posted on by dystoniaandme

On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.

I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.

I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.

This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.

Spasm Induced Blindness

I want to bring some awareness to one of my rarer Dystonia symptoms. My eyes do a few different spasm, sometimes they blink rapidly, other times they clamp shut, but more often they roll back into my head and stay there for long periods of time. Luckily Botox injections helps my first two spasms a lot so they do not really bother me anymore. However I go blind on almost a daily basis now.

When the blindness first happened last August it was only for a few minutes, it was scary but I could deal with it. A few days later I went blind for 15 hours, which resulted in 8 days in hospital whilst they checked for things like epilepsy and tumors. Needless to say those 15 hours of blindness were terrifying and I began to worry that my eyes would never roll back down to where they should be. Thankfully I have never had one as long as that since, but they do often last for hours at a time.

This particular eye spasm is not common in Dystonia sufferers. There is not much that can be done to help it as there is no way to Botox the muscles behind the eyes that cause it. Taking muscle relaxants makes a small difference, which is better than nothing. I try to be careful and stay away from anything that I know will trigger it  e.g flashing lights or bright lights.

Not a lot is known about this particular symptom so it is hard to know what to do to help myself. Even Dystonia websites brought next to nothing up. Last night, on one of the Dystonia Facebook groups, I managed to get in touch with several other women, some from different countries, who experienced the same thing. I cannot put into words the joy this brought me, how soothing it is to know you are not the only person out there who cannot keep their eyes in place. It is rather calming.

The photo below is from this weekend, the flash on the phone (that we thought we had turned off) caused my eyes to spasm and go blind. These spasms are very painful, and unnerving, but are something I am learning to live with as part of daily life. I am so thankful that I know that no matter how many hours my eyes are gone for they will eventually always come back,

Me with my eyes spasming causing blindness

Posted in April 2013, Archive

Exciting & Empowering Day

Posted on by dystoniaandme

Today has been such a fantastic and empowering day! I had been looking forward to today all week as I had planned to go out and see a few friends and then have a personal training session. Normally my friends would come to see me, and I would sit in the middle of my bed so that if I do have a Non Epileptic Seizure I am safe. Instead I went out to my friend’s house, and my mum left me there on my own. This was the first time I had been left in someone else’s house on my own since July 2012. This excited and scared me. It turned out that I had no reason to be scared as it went perfectly. I spent the time sitting down, laughing with them and for a few hours felt like a normal 20-year-old. This has given me confidence to venture out more, I know that eventually my little Dystonia alien will act up but I cannot let the fear of that keep me from trying to establish a normal social life.

I had not been able to see my Personal Trainer for a few weeks as my spasms had been so bad and more of my body had been affected (only my left leg is unaffected now). As usual I was really looking forward to today’s session. I love our sessions as I am doing something proactive that not only challenges my little Dystonia alien but makes me feel positive about myself.

In today’s session my dystonia attempted to act up, and we worked around it. I paused when the spasms made it to hard to do that particular exercise but carried on as soon as it released. It was an extremely good session and I only had one tiny Non Epileptic Attack and a handful of spasms in it, which I thought was fab considering it had been a few weeks and my body’s not been great recently.

My Personal Trainer and I had previously discussed trying out a TENS machine to try to counteract the spasms. Whilst my hand was in spasm, he put the TENS machine up to full power and within a few seconds the spasm in my hand had released. The theory behind this is that to use a set of muscles another set has to relax, so by stimulating the relaxed muscles the spasming ones had no choice but to relax. The positive outcome it seemed to be having amazed me, it was like having a remote control for my Dystonia alien. I have no idea if this will happen on other parts of the body or if stronger/different spasms will react so positively, however this is an exciting experiment that I am going to enjoy greatly. I am planning on videoing my hand in spasm and how the TENS relaxes it, so that I can show my consultant.

If anyone has tried using a TENS  before for Dystonia please let me know, I would be extremely interested to hear how you got on with it. You can get in touch with me by either commenting on this post or by going to this page https://www.facebook.com/dystoniajourney where you can inbox me privately or comment publicly.

 

Posted in Archive, March 2013

Tongue Twister

Posted on by dystoniaandme

Last night my little Dystonia alien decided to play a rather amusing game with my tongue. Now he has done similar things with it before e.g the spasm causing it to poke out or to wriggle when I try to talk. However before these spasms have only lasted for minutes. Last nights tongue spasm lasted for around 45 minutes.

My tongue felt as if it had folded itself under in half. It was not painful, but it was an extremely odd sensation. I then made the mistake of trying to talk. My words came out slurred and the majority of them were impossible for my mother to understand. However I am a complete chatterbox, I love to talk! So my mother and I sat there for a while with me trying to talk and my mum having no understanding at all of what I was trying to say.

This spasm did however provide lots of laughter. My mum and I, were doubled up in fits of laughter at it. As soon as we calmed down I would try to talk to see if my tongue was behaving yet, and we would end up shaking with laughter again. It was brilliant. As much as I would hate this spasm to keep getting more frequent and longer, I must admit it was a funny evening. In a way it provided us with a much-needed up lifting period of time.

Though I do feel sorry for my mum, for once my tongue spasm had ceased, I decided to tell her exactly what I had tried to say to her for 45 minutes  which was nowhere near as funny as me telling her when my tongue was in spasm. Anyone who did not know what was going on most likely thought I was a drunken lunatic.

As much as I dislike having Dystonia, I am glad last nights tongue spasms happened, as it reminded me that even at times when I am not in control, I can still laugh and have a good time.