Tag: Botox injections

Posted in Archive, September 2014

Excitement and Nervousness

Posted on by dystoniaandme

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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Posted in Archive, September 2014

Glimmer of light at the end of the tunnel.

Posted on by dystoniaandme

I finally feel like there is a light at the end of what felt like a never-ending tunnel. Last week I attended an appointment at a local private hospital to see whether they would treat me for Chronic Neurological Lyme Disease. Whilst they have said no to giving me IV treatment they have offered me an oral antibiotic pulse protocol which they think will cure me of Lyme. They say it has cured others similar to me before, so I have high hopes.

Now that they have said they will treat me I feel like my stress levels have plummeted, though I must admit they did soar back up when I saw the price for treatment. I have no idea how I am going to afford it, but at the end of the you cannot put a price on health! Being free of some of my symptoms and having to battle with my body less seems like something out of a fairy tale to me, yet now it is just at my fingertips! Having less pain, less to contend with would be bliss.

I have been lucky that my Botox has worked rather well since I last saw my neurologist. So I have not had to cope with my Dystonia stressing me out at the same time. Today is the first time I have woken up and thought ooh actually my jaw and neck don’t actually feel quite right. Not that I am complaining, with only two weeks to go until my next lot of injections for it to only start twinging now is fine by me as the muscle are not distorting yet.

For those of you who are unaware there are currently two Dystonia online petitions going around. One is US-based the other UK. However it does not matter where in the world you are you can sign either one or both, and I urge you to as it will help make a much-needed difference by boosting awareness of the condition!

1) https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

2) http://www.change.org/p/uk-government-raise-awareness-about-dystonia-an-illness-which-cannot-be-cured-and-97-of-doctors-dont-know-about-it-properly?recruiter=45857151&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition

Posted in Archive, August 2014

Emotional Turmoil

Posted on by dystoniaandme

Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.

Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month. 

I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.

The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!

Posted in Archive, August 2014

Positivity Promising Proactive Prospect

Posted on by dystoniaandme

Its been a few weeks since I blogged and it is hard to know where to start as so much has happened. I have had hospital appointment after hospital appointment, and I find that I am still trying to wrap my head round them all. I’ll keep todays blog brief and just mention a couple of appointments.Thankfully though my Dystonia has not been too bad as of late, my legs are tolerating my splints with more ease which is making life and physiotherapy much easier.

Last week I had an appointment at the Royal National Orthopaedic Hospital to see a specialist to do with my Joint Hypermobility syndrome, she has decided she wants me put on an outpatient program there building up towards being put into a 3 week intensive rehabilitation program. It was extremely a positive appointment that has left me feeling very optimistic. Joint Hypermobility Syndrome combined with Dystonia means my body can end up in some weird and wonderful positions, which can be rather painful, so I am hoping this program will give me some coping tools.

On Wednesday I attended a local private hospital that treats Lyme Disease to see if they would consider treating me. The Dr was rather lovely and very thorough in her examinations which left me feeling quite confident. They took blood to test for a number of things including Lyme Disease, and explained the treatment process if the results they needed came back. Having treatment through this hospital will be extremely expensive however you cannot put a price on health. Lyme disease has robbed me off so much of my life, and in many cases literally takes people lives, I don’t plan on being next. The NHS turning a blindeye on this condition will be one that in years to come they will look back on with regret.

This coming week is filled with more appointments. I am rather looking forward to seeing my neurologist, I am going to ask if he will botox my calf again and see if this helps with learning to walk!

Posted in Archive, July 2014

Chronic Lyme Disease

Posted on by dystoniaandme

I have put off writing this blog post for a few weeks now. Not because I didn’t want to be open about what I’m currently experiencing, but because putting it all down into words makes it all very real and I am finding it extremely hard to deal with. As I have mentioned before the doctors believe my Dystonia is caused by damage to my brain by Lyme Disease. I contracted Lyme Disease when I was six and have been on oral antibiotics for it since May last year.

A couple of weeks of a go I finished the last of my oral antibiotics. Although I had been told that realistically I needed IV antibiotics to cure my neurological Lyme disease, I had hoped that a year on oral ones may have been enough. Unfortunately it had not been and over the last few weeks my hand spasms, back spasms, vocal tics, fatigue, on/off functional paralysis etc have all come back. I have been coping with this the best I can, its been coming back slowly so I have had a chance to ‘adjust’. However now and then spasms will happen and I will have a bit off an emotional wobble. I cannot write anymore, I struggle to do my make-up, getting dressed has always been hard due to my Dystonia but throw in Lyme Disease and it takes most the morning to accomplish on a bad day. Yesterday I was just trying to pay for an item in a shop and my hand spasmed around the card reader, I could not let go. My friend had to try to yank my hand off it whilst the till worker pulled the reader out. I was mortified!

Yesterday I visited my GP who does not believe in Chronic Lyme, my mother and I went prepared to do battle. He is normally very dismissive of anything to do with Lyme Disease and had previously said to me that even if my symptoms came back he would not be willing to prescribe me anymore antibiotics. Thankfully he seems to have had a slight change of mind and has give me 2 more months worth. In this 2 month slot I have an appointment at a private hospital that are known to treat Lyme Disease, I am hoping that they will be willing to give me the IV antibiotics that I need to cure me. I am not sure how likely it is that I will get anymore antibiotics off my GP after this 2 month supply runs out. I started them today, and should hopefully see an improvement in the next few weeks. For now I am keeping my fingers crossed that this private hospital pulls through!

On a much more positive note I had my Botox injections last week for my Dystonia which means my jaw and neck will be in place whilst I am on holiday!

Posted in Archive, May 2014

Alternative Coping Methods

Posted on by dystoniaandme

Today is the last day of Dystonia Awareness weeks, which is most likely a relief to all the lovely people who are signed up to receive email alerts when I post a new blog as I’ll be going back to posting a couple of times a week. It has been amazing seeing how many people have joined in with Dystonia Awareness week, Thunderclap was seen by over 6 million people which is incredible!

In many of my blog posts this week I have mentioned treatments such as Botox injections, muscle relaxants and Deep Brain Stimulation, however none of these treatments can guarantee relief and are not always accessible, so I wanted to discuss some alternative ways of coping with symptoms. Heat is great for relieving muscular aches and pains that can result from spasms, wheat packs, back wraps and microwaveable slippers are all great products and I use at least one of these three several times a week. TENS machines are also great, I don’t know what I’d do without these. I never go anywhere without one in my handbag and towards my Botox dates they often help keep my neck spasms bearable.

If you can afford alternative therapies I would highly recommend trying Reflexology. I found before having regular treatments that I could not sleep well at night as the spasms would keep me up. This turned into a vicious cycle as I was then too tired to handle my spasms well in the day. Now I find having regular Reflexology treatments enables me to have several good nights of sleep a week which does me the world of good as it means I can handle whatever my body throws at me in the day better. I also find burning scented candles or essential oils helps me relax (and after putting them out) get to sleep easier.

Everyone finds something different that will help them, for some people touching certain pressure points will relieve spasms to a certain extent, in others hot or cold therapy does. For me as I mentioned above heat, TENS and Reflexology are what keeps me ticking along in between Botox appointments. Its worth experimenting and trying to work out if anything particular helps you.

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 Archive, May 2014

Blepharospasm

Posted on by dystoniaandme

Blepharospasm is a type of Dystonia that affects the eyes. These spasms are often rather painful and can involve the eyelids as well as the muscles behind and around the eyes. As with all types of Dystonia people experience different types of spasms, some people have increased sensitivity to light and rapid blinking, whilst others find their eyes spasm shut, and in some cases the muscles behind the eyes pull the eyes up into the head making the person functionally blind. I experience several of these spasms and find that the sensitivity to light often triggers the other spasms.

Generally speaking symptoms usually appear in people around the ages of 50 to 70. However it does affect younger people, Blepharospasm can appear on its own or in conjunction with or part of other Dystonias such as Meige Syndrome or Generalized Dystonia. Blepharospasm is thought to affect around 7,000 adults in the UK.

There is currently no known cure for Dystonia. Treatment for Blepharospasm normally involves regular Botox injections. I find that six weekly injections around my eyes helps with symptoms such as spasming shut and rapid blinking, but the muscles behind the eyes cannot be injected. By wearing dark sunglasses in the sunlight or in brightly lit area, I can reduce the chances of going blind but it still happens. The longest this has ever happened for is 15 hours. Some people find that pressure points around the temples, and nose area can help relieve the spasms. Obviously these pressure points differ from person to person.

In the picture below you can see my eyes pulled back in a spasm leaving me functionally blind.

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The Dystonia Society’s website has some great tips on how to cope with the condition so head on over to it to find out more http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/eye-dystonia-