Dystonia – September is Dystonia Awareness Month

When I first suggested to my friend Bee, (who regular followers will know wrote a guest blog post for me), that I write a piece on Dystonia for Dystonia awareness month, I really thought I understood the condition. You can find Bee’s guest blog post here on Blogger or here on WordPress.

I am not claiming to be a medical expert but I had watched a few documentaries and thought I had my head wrapped around it. I asked Bee to provide me with some good links to sites so that I could complete some research and whilst reading them I realised my so called knowledge was woefully lacking. Yes  I understood that Dystonia at its most basic level is a condition that causes muscle spasms but there is so much more to it than that. I am really pleased that I have educated myself further and learnt more about this little known condition.

Dystonia is the third most diagnosed neurological disorder after Essential Tremor and Parkinson’s Disease yet it remains largely unknown to the general public and medical professionals.This means that many sufferers spend years trying to discover what is happening to them and many are left without a diagnosis. From all the first hand accounts I have read that was the common thread, the sheer length of time it took to obtain the correct diagnosis.

Dystonia is a neurological disorder where the brain sends messages to the muscles that make them contort or spasm uncontrollably. The muscle spasms that affect the sufferers of this condition can be constant or they can come and go.Dystonia can cause an abnormal posture or repetitive movements and can cause sufferers an incredible amount of pain. Like any condition no two patients are the same, so levels of pain varies for each person. Dystonia can affect a person’s speech, eyesight, neck, trunk or limbs. It is a condition that is treatable not curable.

On commencing research for this post I assumed that Dystonia was just one illness however on research I have learnt that simply is not the case and a good source of information on the many different types of the condition can be found at dystonia.org.uk. Having perused a couple of websites for information I think the NHS Choices site is the easiest to understand for absolute beginners which I would class myself as, even though I had heard of the condition.

The most common form of Dystonia according to the NHS Choices website is Focal Dystonia – this is where a single region of the body is affected such as the neck (cervical) or the eyelids (blepharospasms), 90% of sufferers are believed to have this kind of Dystonia. Cervical Dystonia is the kind my guest blogger Bee suffers with and she has kindly agreed to share a bit of her story about how her Dystonia started and how long it took her to be diagnosed.

Bee’s story

Dystonia like other conditions can take years to be diagnosed, which often compounds issues that sufferers are experiencing. One rather significant reason it takes so long to be diagnosed is that many individuals are unaware of what Dystonia is, including General Practitioners and many medical personnel. This often leads to people being undiagnosed or misdiagnosed for many years. As with most medical disorders or diseases treatment in the early stages can be less invasive and more effective. When you are diagnosed late it is as if you are forever playing catch up.

Doctors often tell me that I am a unique and a complex case, which always fills me with joy to know I am so special. My symptoms did not present rapidly or typically like they do in some individuals.Medical opinion states that Dystonia does not progress however in my own case this is not true and from speaking to others with the condition they would refute this also.

Based on my recollection and discussions with my Doctors this is when and how my Dystonia began and progressed. The consensus among the medical professionals that treat me is that it began in my late teens or early twenties. For those of you that read my previous guest blog, I will be 40 soon and was diagnosed at the age of 35.

My symptoms began as chronic headaches, which of course could be attributed to just about anything in the medical world. I felt it was normal for everyone to get headaches on a daily basis. When I was working I would typically develop a headache at approximately 1:00 pm every day. Initially, the opinion was that I was experiencing these headaches due to a cyst in my right sinus.After going to the Ear Nose and Throat Physician and not receiving any definitive news, I figured ok who knows what it is, so it must be fine.

When I was 24 I gave birth to my beautiful son. I had worst neck pain I had ever felt in my life,I attributed it to childbirth and thought no more of it. At the age of 27 I gave birth to my beautiful baby girl. I had extreme headaches, yet again I put this down to childbirth.

Before the age of 27 and I am not sure when I developed a slight tremor in my neck and head. My family were aware of it however I don’t think I truly became aware of it until the age of 27. It was noticed by some but not mentioned by any until later, with one exception. There was an occasion where I was speaking with a man at work and I thought my neck was shaking, at the time I suspected it was because I was nervous or better yet it was in my head and not occurring at all. The next thing I knew the gentleman asked me in a somewhat bold way, “ What is wrong with your neck?” I remembered thinking wow that was sort of rude and I will never forget it as long as I live. I did nothing about it because it wasn’t causing me any pain.

Having spoken to my son about the piece I have written for Rachel, he told me that when he was small he always thought I was shaking my head as if to say “No!” to him. That wasn’t the case it was the Dystonia causing the tremor in my neck muscles making my head move in that way.

When I was 30 we moved to another state and I had quite a bit of anxiety. After much denial I finally went to a Dr. at the urging of my husband. I began taking Lexapro (Escitalopram, an antidepressant), which seemed to help the tremor. Once again I felt the tremor was psychological.

Finally, when I was 35 the headaches would not go away my right arm turned purple and I went to the ER. Additionally I had not felt well overall for a few months, constantly fatigued for no apparent reason. No explanation was ever given by the ER Doctors as to why my arm had gone bright purple and I think I will never know the answer.

I decided at this point that perhaps it would be wise for me to see a Neurologist. I saw a superb neurologist we discussed my headaches I mentioned having a slight tremor. He completed standard neurological testing. Fortunately, he had trained in the area of Dystonia, if not I don’t know that I would have a diagnosis or treatment today. He diagnosed me right away. This took place approximately one month after my ER visit.

In my previous guest blog post I discussed my treatment. As with any chronic illness it is an ongoing ever evolving process. The management of my Dystonia has improved since having the Intrathecal Baclofen pump implanted. I also have Botox injections every 12 weeks to help relax the muscles and prevent spasms.

At present because the pump is a new addition to my management regime my doctors and I are playing with the doses of Baclofen it releases until we work out which dose works best for me.

Before having the Baclofen pump fitted I struggled with moving my head as my neck was continually in spasm. The pump has changed this however on a bad day and unfortunately I never know when they are coming, I can still have problems with moving my neck. Its just with the pump the very bad days are not as common as they were before.

Despite the pump I still suffer with crippling fatigue and I must pace myself during the day. Dystonia has completely changed the way I live my life.

I was greatly relieved when I was given the diagnosis of Dystonia as it explained what was going on with my health. That relief was some what tempered when I began to look into Dystonia and realise that it is treatable but not curable.

That is why it is so important to raise Dystonia’s profile. Had it not been for the fact that I visited a Neurologist that had heard of the condition and had treated others I may still be without a diagnosis. I find this shocking when this is the third most diagnosed Neurological Disorder.

I would like to say an enormous thank you to Bee for providing me with her personal story and helping me put together this blog post to raise awareness of this condition.

Can I ask each and everyone of you who reads this blog post to sign this petition, which is to raise awareness about Dystonia by declaring in the USA September as Dystonia Awareness Month. It just takes a minute or so and even UK residents can sign it, you will just need to verify your email address. Thanks for taking the time to read this post and if you do decide to sign the petition thank you.

8 thoughts on “Dystonia – September is Dystonia Awareness Month

  1. Thank you for writing such an informative post. The amount of change Dystonia has caused in our lives is immeasurable. Bee struggles daily with Dystonia. My hope is that with the help of people such as yourself we will be able to raise the awareness of this disorder that affects so many. Thank you again. Cheers 😉


    • Hi Beau,

      Thank you for your lovely comment. I will be honest Bee did all the hard work with this post. She wrote an honest post on how it affects her and shoved me in the right direction of some excellent blog posts.

      Thanks for reading and thank you for all the tweets as well.

      Rach x


  2. Rach,
    I can’t thank you enough for taking the time to write this piece and raising awareness about Dystonia. It means the world to me as well as so many others.

    You are the best! 🙂

    Liked by 1 person

  3. Dearest Rachel
    Thank you so very much for your interest and pursuit of knowledge on dystonia. There are a great many things I want to say but alas I can’t express myself on this one. Brittany is my very precious daughter who needs all the help and yeas she can get. Brittany has spent her entire life loving and giving of herself to others. I so hope this awareness drive puts a humungus spotlight on the need to move ahead with research in a fast and furious pace.

    Big Bam

    Liked by 1 person

    • Hi,
      Thank you so much for taking the time to read and comment on my blog. I have come to know Bee through my blog and I thank the stars I met her.

      I can not thank her enough for her help in putting this piece together and I cant wait to tell her that we have smashed the 30 people in 30 days target already and I am hoping that we do 60 so we have 30 each!

      One of my followers has already contacted me to say they’ve signed the petition.

      My mum also struggles at time seeing my words on the page, it makes it seem more real, although as a mother you already know what Bee goes through.

      Thanks again and lovely to “meet you”

      Rach xx


  4. Loved your reply. Writing it down is a harsh slap in the face. I’m sure I’ve reached an easy 35 0r 40 people. My documentation is truly lacking as is my technical skill. It is a god sent y’all have each other! It’s delightful chatting with You. Take care


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