Dr Marion, about Dystonia & Botox

A leading Neurologist Shares her Clinical experience and insight about dystonia and Botox.
London, United Kingdom.


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Understanding dystonia and its treatment. Video on questions & answers

A good knowledge of the dystonia is important for a patient to become actor of its treatment. The Dystonia society UK asked me to answer to the most frequent questions coming from their members. Please follow this link if you want to watch this video posted on the Facebook pageof the Dystonia society.

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The questions were as follow:

What causes dystonia in adults? Can any vaccine, peripheral nerve damage, the menopause or the surgery has any affects? (Time 1.00)

Does dystonia spread? If so, are there any particular parts of the body it spreads to and from? (Time 6.20)

How long do the symptoms carry on getting worse? (Time 7.58)

I understand Botulinum toxin is a type of poison. Is it safe to use? (Time 13.35)

Can Botulinum toxin be used in pregnancy? (Time 13.39)

Is there a way to avoid side effects from Botulinum toxin such as pain at the injection sites, swallowing difficulties, blurred vision? (Time 15.21)

How can I manage pain in dystonia if it is not relieved by Botulinum toxin? Is it OK to take pain medications on long term basis? (Time 18.57)

Why is my Botulinum toxin not working? Might is this because I become immune to the toxin? (Time 20.41)

Is Artane (Trihexyphenidyl) helpful? Is there an age limit for taking it? (Time 31.54)

Can physiotherapy or mind retraining help? (Time 36.50)

Might diet or complementary therapy help to manage dystonia? (Time 39.09)

I hope it will contribute to a better understanding of dystonia by the patients themselves and help them to cope better in their daily life.

Dr MH Marion

Why Spasmodic dysphonia is often mistaken for a functional disorder?


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Spasmodic dysphonia, also called laryngeal dystonia, is a neurological disorder, responsible of a strangulated, strained voice and rarely of a whispering voice, which has a major negative influence at work and in personal life.

Patients with spasmodic dysphonia require to be distinguishing from patients with functional dysphonia and from patients with “muscle tension dysphonia” (MTD) which is also considered a functional disorder rather than a neurological disorder.

 

Many reasons can explain why spasmodic dysphonia , which is a dystonia of the larynx, is not well recognized by doctors.

 

1-Laryngeal dystonia is a rare condition (1/100 000), and like other focal dystonia, the diagnosis is clinical; if you have never heard somebody with spasmodic dysphonia speaking, it will be very difficult to recognize it.

 

2- It mainly occurs in women, who carry the stigma of being more vulnerable for functional disorders.

 

3- The onset can be sudden in 45% of the cases (Childs, 2011).  Sudden onset is also a characteristic of functional disorders.

 

4- When the onset is sudden, the majority of patients recognized triggering factors such as stress (42%), upper respiratory infection (33%), and pregnancy and parturition (10%).(Childs, 2011). Stress should be seen as a non-specific triggering factor making patients vulnerable to develop any medical conditions, and not specifically functional disorders.

 

5-A phobic component occurs very quickly after onset, as the patient avoid answering the phone, and speaking in public as it’s required such an effort to speak in these circumstances.

 

6-It’s a task specific condition as every focal dystonia,; spasmodic dysphonia occurs when speaking, and voice can be normal for singing or shouting. This task specific characteristic can be disconcerting for both the patient and the doctor.

At the difference, functional dysphonia is responsible of a permanent speech disturbance, with a whispering voice or a hoarse voice occurring when speaking, and impossibility of shouting or singing.

 

7- “Muscle tension dysphonia” (MDT) patients tend to exert too much effort on their vocal cords when speaking and can present with a strained voice, as spasmodic dysphonia.

But when examining the speech in details, three tasks: sustained vowel /a/, oral reading of a standard passage, and connected speech describing a standard picture have to be performed, as the spasmodic dysphonia could be more apparent in the connected speech situation, compared to MDT.

 

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It’s very important to diagnose spasmodic dysphonia, as Botox injections into the vocal cords can alleviate the symptoms and restore confidence for effortless speaking.

At the London BTX centre, in Sloane Square, Dr Marie-Helene Marion offers multidisciplinary clinics with voice specialists for the diagnosis and  treatment of spasmodic dysphonia with Botox injections.

 

 

 

 

How does my jaw move?

The functional anatomy of the jaw is essential to understand dystonic movements of the jaw when a patient is eating or speaking. The chewing movements are extremely complex and I will detail only the main posture of the jaw, following dystonic spasms.

The jaw can move in a vertical plan, with opening or closing the mouth

The jaw can move in a saggital plan, the jaw going forward ( protrusion) or backward ( retrusion)

The jaw can move in a lateral plan, the jaw going side to side or going down and to one side, called deviation of the jaw.

The masticatory muscles, responsible of these movements are 4 pairs of muscles ( masseters, temporalis, median pterygoid and lateral pterygoid muscles) and the mouth floor muscles ( supra-hyoid muscles).

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A combination of these movements is usually involved in the dystonic spams of the jaw. The video recording of a patient when chewing can be very helpful for analysing in details the dystonic spasms.

Dr MH Marion at the London BTX centre, is specialised in the treatment of dystonia, and injects under electromyogram guidance the masticatory muscles involved in oro-mandibular dystonia.

My jaw is out of control when speaking or chewing: what does it mean?


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                                                    the Iron jaw in circus 


Eating is a simple pleasure of life and a necessity. Biting into a biscuit could require a tremendous effort when the movements of the jaw become out of control. The automatic movements of the jaw and the tongue, which allow us to eat or speak, can be disrupted by involuntary jaw spasms.


What are the causes of jaw spasms?

1-Idiopathic jaw dystonia is the most common cause of jaw spasms. The onset is between the age of 50 to 60 and it is more frequent in women. Dental works can trigger it. It’s called idiopathic dystonia as no underlying disease can be found. A genetic mutation has been identified in familial form of jaw dystonia ( DYT6).

2-Tardive jaw dystonia can follow a treatment with drugs used for the treatment of psychosis, called neuroleptics.

3- Hereditary disease affecting the brain is often the cause of jaw spasms occuring in young people, under the age of 20.

4- Hemi-masticatory spasms is usually a consequence of radiotherapy of the jaw area for cancer of the ENT sphere. In that case, the spasm is painful and affecting one side of the jaw with sudden, unexpected painful clenching of the jaw.

 

Are there different types of jaw dystonia?

1-The jaw spasms can be closing spasms with sudden clenching, responsible of tongue biting, teeth breaking and limitation to open the mouth wide

2-The jaw spasms can be opening spasms, responsible of difficulties to keep the mouth closed and to keep the food into the mouth. Often the tongue is involved and has a tendency to poke out the mouth.

3- The jaw spasms can also move involuntary the jaw side to side, or on one side only, or forward (protrusion) or backward (retrusion)

 

The movement involved in eating and speaking are incredibly complex and the dystonic spasms can be a combination of opening, deviation to one side and going backward or forward.

 

What are the characteristics of jaw dystonia?

 

The jaw spasm occurs in any attempts of eating and/or speaking, therefore the diagnosis requires looking at the patient performing these tasks. The doctors should have a box of biscuit available to examine their patients with dystonia!

The spasm are relieved by some tricks like keeping a sweet in the mouth or a chewing gum, sucking a matches or the temples of their spectacles.

 

 

How to treat jaw dystonia?

 

The most efficient treatment is the Botox injections of the masticatory muscles.

            -The muscles, which close the jaw, are the masseters, the temporalis and the median pterygoid muscles

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Masseters, closing jaw muscles                                


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Temporalis, closing jaw muscles

Figure adapted from Travell and Simons’               



-The muscles, which open the mouth, are the lateral pterygoid and the mouth floor muscles.

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Mouth floor muscles ( opening jaw muscles), also called supra-hyoid muscles

Figure adapted from Travell and Simons’

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Median ( closing jaw muscles) and lateral pterygoid (opening jaw muscles)

Figure adapted from Travell and Simons’

'Some of these muscles are superficial and easy to inject ( masseters, temporalis,mouth floor muscles), some are deeper (median an lateral pterygoid muscles) and requires to be injected with electromyography guidance.

The difficult part is to analyse the abnormal movements and understand which muscles are involved in the dystonia. It can take many injections sessions, to get the spasms under control. The 2 limiting factors are the swallowing difficulties, due to the spread of the Botox , in particular when the tongue  muscles have to be injected.  Starting with small doses and increasing gradually the dosages is advisable.

The human masticatory muscles are very strong, in particular the muscles which closed the mouth; just think of the acrobats in a circus who get suspended by biting a mouthpiece. But at least injecting jaw muscles in human is possible if we compared them to the jaw clamping muscles of the crocodiles, which are extremely strong, and as hard as bone.

 

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 Strong closing jaw muscles of the crocodiles

Dr Marie-Helene Marion is a specialist in Botox treatment for jaw spasms, and in particular for jaw and tongue dystonia.

British Neurotoxin Network 2013 meeting, Keble college, Oxford

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 The 3rd British Neurotoxin Network annual meeting was hold in Oxford last week; 74 Botulinum toxin injectors gathered for all over UK in the superb location of Keble college. The program covered both practical and scientific aspects of botulinum toxin and dystonia.

 I gave a pre dinner talk on facial expression of emotions, looking on how the concepts have evolved from the 19th century with Charles Bells ‘s anatomical dissection of the facial muscles, to the 21st century with the influence of facial Botox injections on our expression of emotions.The collaboration of Duchenne de Boulogne with his neurophysiology study and Charles Darwin on expression of emotions in man and animals contributes to the present understanding of the universality of expressions and the recognition of basic emotions on a face, which was confirmed by Paul Ekman, an American psychologist.The Botox has been used as a research tool in the 21-st century to understand the relation between emotion and facial expression. Repressing the expression of emotions by too much cosmetic Botox or by neurological conditions such as facial palsy could disturb in return our ability to perceive emotions.

image      Duchenne de Boulogne, 1862

 imageCharles Darwin, 1872                        

             

The following morning was dedicated on reviewing the techniques and indications of the treatment of drooling by Ms Helen Witherow, maxillo-facial surgeon in London, the treatment of jaw dystonia by myself and the comparison of 2 techniques of injection: either electromyographic guided or ultra sound guided injection by Dr Sabine Klepsch , neurophysiologist in Bristol. Ms Catharina Pearce, medical student from Cardiff presented the results of a national survey on the use of Botulinum toxin in pregnant women.

In the afternoon the lectures were focusing on new concepts in dystonia and in particular the attempt of defining a new endophenotype (heritable clinical markers) for adult onset focal dystonia by Dr Sean O’riordan from Dublin and Dr Richard Grunewald from Sheffield.

 Outside the Botulinum toxin treatment, Mr Alex Green, neurosurgeon in Oxford, explored the effect of Deep Brain Surgery on dystonia and Mr Richmond Stace physiotherapist in London, the basis for retraining of cervical dystonia.

A video session, where colleagues were presenting video of dystonic patients with unexpected outcome, was animated and the opportunity again to share our individual approach to treatment.

The meeting was also a great opportunity for the secretary Mr Bells to update the UK maps of the service using botulinum toxin for treating neurological conditions. it’s accessible to anybody who is looking for a specialist centre to be treated for dystonia in particular.

 Dr Marie-Helene Marion, chair of the British Neurotoxin Network

 

My head shakes: is it dystonia?

 

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Keith Haring

Millions of people all over the world, uses her head and neck to carry heavy goods. The control of her head posture must be phenomenal and does not allow any slight involuntary movement of her head. Unfortunately, for some people the head starts shaking and even without relying on their head as a way of carrying, they found this condition very disabling.

 Head tremor described a movement of oscillation of the head, making the head going side to side, called no-no tremor or up and down, called yes-yes tremor. The tremor can be regular like a pendulum or irregular, with the head going further away from time to time.

Head tremor can be due to a condition called essential tremor (essential head tremor: EHT) or due to dystonia and in that case the tremor is labeled dystonic tremor (dystonic head tremor: DHT).

The clinical diagnosis of the different types of head tremor can be a dilemma when the head tremor is isolated, as neurologists don’t agree between themselves on the definition of dystonic tremor. Nevertheless, the distinction needs to be done, as the treatment and the prognosis may differ.

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Table1: Differential diagnosis between essential head tremor and dystonic head tremor. Dr Marie-Helene Marion, 2013, www.infodystonia.com

ESSENTIAL HEAD TREMOR

  1. Essential tremor (ET) is a clinical description of a familial regular tremor, which affects 50% of the siblings when one parent is affected.
  2. ET can affect hands, head, chin, tongue and voice.
  3. Women with ET have more chance to develop a head tremor.
  4. ET occurs on posture, so the essential head tremor (EHT) is present when sitting, walking and disappears when lying down.
  5. ET, mainly when the tremor is affecting the hands, has the particularity of being improved by drinking alcohol and responding to beta-blockers drugs such as Propanolol.
  6. EHT is not controlled by sensory trick such as touching the cheek or the chin with the hand.
  7. EHT is always associated with other tremor in the arms or tongue or voice.  A collaborative study between Turkey and USA looking at head tremor due ET (583 ET cases) has not found one isolated case of head tremor; all were associated with at least a mild hand tremor. 

DYSTONIC HEAD TREMOR, WITH FOCAL DYSTONIA.

  1. · Dystonic head tremor (DHT) is an irregular head tremor, which is easy to diagnose when it occurs in a patient with a obvious cervical dystonia (with abnormal head posture and muscle spasms), and considers as a tremulous cervical dystonia. DHT is one of the first symptoms of cervical dystonia in 30% of the cases and is reported in 30% to 60% of the established CD cases.
  2. · DHT can also be present in absence of neck dystonia, but associated with other focal dystonia, such as blepharospasm, oro-mandibular dystonia, voice dystonia or even a writer’s cramp. Therefore patients with head tremor need to be examine thoroughly when speaking, eating, writing…

 ISOLATED DYSTONIC HEAD TREMOR

DHT can be present but without any associated dystonia on examination; the diagnosis in that case is more difficult.

·      The family history of tremor or dystonia can be absent as the penetrance of the gene for focal dystonia is low (it means that the genetic abnormality can stay silent and is not always associated with dystonic symptoms and therefore can “skip a generation”).

·      The diagnosis of dystonic head tremor will be made clinically on the association of others signs.

1.    The head tremor is irregular on observation

2.    The head tremor is relieved by a sensory trick (similar to what describes for cervical dystonia) with fingers on the cheek or the chin.

3.    The head tremor persists when patient lying down.

4.    The head tremor is worst in certain position of the head (position dependant).

5.    The head tremor is associated with an irregular tremor of one hand, suggestive of a dystonic arm tremor as irregular and existing only in one hand. (at the difference of ET tremor which affects both hands).

6.    The head tremor is isolated, with no tremor in the hands or in the face or voice. (at the difference of EHT which is always associated with tremor in other part of the body).

CONCLUSION

Despite the fact that the patients are not always aware of their head tremor, in particular in case of EHT, head tremor can be very disabling socially.

Head tremor can benefit from therapeutic options such as drug treatment and Botox injections, which have to be offered depending of the type of tremor.

Further research is needed to characterize more precisely this movement disorder. May be it will come from unexpected study such as the episodic head tremor observed in Doberman Pinsher dog …

 Dr Marie-Helene Marion is a London neurologist, specialist in dystonia and its treatment with Botox.

Doberman Pinsher dog

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REFERENCES:

1-Can J Neurol Sci. 2000 May;27(2):137-42.

Head tremor in cervical dystonia. Pal PK, Samii A, Schulzer M, Mak E, Tsui JK

2-Arq Neuropsiquiatr. 2008 Dec;66(4):805-8.

Head tremor in patients with cervical dystonia: different outcome? Godeiro-Junior C, Felicio AC, Aguiar PC, Borges V, Silva SM, Ferraz HB

3-J Neurol Neurosurg Psychiatry. 2012 Feb;83(2):179-81. doi: 10.1136/jnnp-2011-300823. Epub 2011 Nov 5.

Supine head tremor: a clinical comparison of essential tremor and spasmodic torticollis patients.Agnew A, Frucht SJ, Louis ED

4-Mov Disord. 2000 Sep;15(5):960-4.

Quantification of sensory trick impact on tremor amplitude and frequency in 60 patients with head tremor.Masuhr F, Wissel J, Müller J, Scholz U, Poewe W

5-Mov Disord. 2009 Nov 15;24(15):2281-5. doi: 10.1002/mds.22777.

Isolated head tremor: part of the clinical spectrum of essential tremor? Data from population-based and clinic-based case samples.. Louis ED, Dogu O

 6-Mov Disord. 2011 Nov;26(13):2381-6. doi: 10.1002/mds.23936. Epub 2011 Sep 13.

An inherited episodic head tremor syndrome in Doberman pinscher dogs.Wolf M, Bruehschwein A, Sauter-Louis C, Sewell AC, Fischer A.

 

 

 

 

 

 

 

 

 

 

Living with dystonia: disability, distress and despair

Recently an English lady suffering with longstanding cervical dystonia decided to end her life, with the help of Dignitas in Switzerland.. This tragic event reminds us as doctors how difficult it can be to live with dystonia. I gave a lecture few months ago for the Dystonia Society in London about disability, distress and despair when living with dystonia. The patients afterwards told me how important is it to feel understood and recognized in their fight against this condition..

 -Disability can be overwhelming, as dystonia is brought up by action and interferes with daily life activities. Some patients are blind as they can’t open their eyes, some can’t write, others can’t speak, or can’t walk without fighting with their painful twisty neck.

-Distress at the time of the diagnosis can be profound. The diagnosis is always delayed; the presenting symptoms are often unusual and intermittent at the beginning, making it difficult to be recognized by non-specialists.

-Fall into despair is precipitated by the patient’s lack of knowledge about his condition.  They do not understand what’s happened to them and what to expect from the treatment. They need help to begin to accept that their life may be scheduled into 3 months interval of repeated Botox injection. The chronicity of the symptoms and the associated pain can also lead to a vicious circle of depression, chronic pain and worsening of dystonia. The depression needs to be treated to break this vicious circle.

 

I feel strongly that we can fight each of these dramatic consequences and improve the life of the dystonic patients.

-Education of the patients about dystonia ( Dystonia society,  Patient’s support groups, this blog) allows them to become the actor of their treatment and to work with neurologists  for a positive outcome.

-The therapeutic strategies (drugs, botox injection, physiotherapy, brain surgery) are available to alleviate the disability.

 -A multi disciplinary approach working with physiotherapists specialized in pain and dystonia, and a holistic approach of the patient  focusing on both motor and non-motor symptoms, can help patients to live with their dystonia.

The specialists in dystonia and its treatment are joining their efforts at every level: national ( British Neurotoxin network), European ( European Dystonia Federation) and world wide ( Dystonia Coalition). Research on dystonia is very active all over the world.

Both patients and doctors have to be convinced that there is light at the end of the tunnel and keep hoping for a better future.

 

 

Dr MH Marion is a neurologist in London, specialist in Botox treatment for dystonia: blepharospasm, cervical dystonia, jaw spasms, writer’s cramp and spasmodic dysphonia.

Meeting the experts in Guildford, UK: What about blepharospasm?

Last weekend, 15 movement disorders clinicians from Europe, Russia, USA, and Canada gathered in Guildford, to share views on Botulinum toxin treatment for focal dystonia., This meeting was sponsored by Merz Pharma.  

Dr Elin Forsaa,Dr Svetlana Khatkova, Dr Torsten Grehl, Dr Flavia Coroian, Dr JM Meyer, Dr MH Marion, Dr Dirk Dressler, Dr Sylvain Chouinard,Dr Robert Chen, Dr Sophie Sangla, Dr Said Bensakel, Dr Shyalmal Mehta, Dr Olivier Simon, Dr Richard Evans, Ms Muna Bitar

I was asked to present the key therapeutic challenges in blepharospasm and prof Dressler from Hanover was presenting the therapeutic challenges in cervical dystonia.

What came up in the discussion watching many videocases,  was the clinical diversity of the blepharospasms, which raise a lot of questions.

1-Are the young onset blepharospasm , affecting women before the age of 50, different in their progression and response to treatment?

2-How some patients with primary blepharospasm can be still focal, affecting only the eyes after 10 years of duration and other patients (31% in Defazio study) see their dystonia spread to the lower part of the face, in the first 5 years after the onset?

3-How some patients are mainly “” blinkers” and others “shutters” sic a patient?

In another words is there a group of patients who started with increased blinking, following dry eyes and photophobia, and some who never complains of over blinking, who have no sensory symptoms, but can’t reopened their eyes.?

4-How the dystonic spasm around the eyes can be alleviated initially by speaking or singing, then becoming triggered and worsened by speech when the dystonic spasm has spread to all the face (Meige Syndrome) in a same patient over the years.

5-Are both blepharospasm and migraine which share the same sensitivity to bright light are coincidental when occurring in the same patient or do they share some common pathophysiology of central trigeminal desentizisation?

6- is the Bell’s phenomenon seen in some patients, following an improvement of their spasms after Botulinum toxin injection, is a marker of a persistent underlying dystonic activity as a reflex from the brainstem.

7- Is stimulating, the Muller muscle, which is a smooth muscle which plays a role in lifting up the eyelid, with Aproclonidine eye drop can help patients with so-called apraxia of eyelid opening?

 

Previous studies , in particular the work of G. Defazio, from Italy, have given some answers. Patients with blepharospasm have twice the risk of spreading than cervical dystonia and most spread events occurs after the age of 50..

. Patients with Blepharospasm blinked more at rest than during conversation, by contrast with heatlthy volunteers who blinked more during conversation. Two cases of speech induced Blepharospasm has been described in patients with cranial dystonia.

 I found this session very inspiring, pushing me to look further in the clinical characteristics of blepharospasms.  We always quote the clinical complexity of writer’s cramp, where so many different muscles can be involved. I am convince that despite a only muscle involved, the orbiculatrs oculi, Blepharospasm is not a model of simplicity…

We then all went to a pub in Shere for diner, admiring on the way the beauty of the Surrey hills.  May be in the next few years we will meet again to share the answers to our questions…

 

The William Bray pub in Shere (Surrey) 

 

 

Dr Marie-Helene Marion (London) and Dr Sophie Sangla, a leading neurologist in botulinum toxin treatment in Paris: a friendship of 30 years….


Strangulated and whispery voice due to laryngeal dystonia. What does it mean for the patient?

               Our voice, like our handwriting, is an individual signature.

 

Just answering Hello on the phone is enough for our relatives or closed friends to identify who is speaking.

The daughter or the son of a friend, who speaks just like their parents, sometimes mistakes us. Study on monozygotic twins showed that the voice pitch can be a familial characteristic, which can be useful in the identification of twins.

 Also our voices may express our emotions, such as anger, stress, and happiness like our facial muscles do, mainly through the pitch of our voice. There are studies in the world of forensic science on vocal stress analysis. But none of them have found so far a reliable way of detecting lie based on recording laryngeal micro-tremor.

 Also our accent told people where we come from geographically and socially.

 So, presenting with a voice disorder can be emotionally difficult as not only the oral communication become laborious, but also the way of expressing our emotions is impaired, and part of our identity is lost.

 

 -Spasmodic dysphonia, is a dystonic spasm of the vocal cords when speaking and there are 2 main types of spasmodic dysphonia.

 

1-In the adductor type, the most common form the voice is strained, strangled, frequently interrupted by voiceless pauses, because the vocal cords have difficulties to spread apart when speaking, In that case, the dystonic muscles are the thyro-arythenoids muscles or adductor muscles, which are responsible of getting the vocal cords closed to each other’s.

 

2-In the abductor type, the less common form, the voice is breathy, with prolonged voiceless consonants because of difficulties with voice onset following voiceless sounds such as /h/, /s/, /f/, /p/, /t/, and /k/. The muscles, which are responsible of spreading apart the vocal cords, are the Crico-pharyngeal muscles or abductor muscles.

 

-Emotional factors can influence spasmodic dysphonia

Stress can precede the onset, or worsen the symptoms, but surprisingly patients report that screaming, crying, laughing, and singing can be normal. This variability of the symptoms can be disconcerting for the patient and raise suspicion of psychogenic pathology (due to psychological problems) in the entourage of the patients and even the doctors. The capricious nature of the dystonic symptoms has to be explained for a better acceptation of the condition .

 

-Botulinum toxin injections into the vocal cords are the most efficient treatment of this condition, which curiously not only restore the voice fluidity in case of adduction dysphonia but also the voice personality with pitch and accent. Repeated injections every 3 to 6 months are required to maintain a good voice.

 

-References:

Voice similarity in identical twins. Van Gysel WD, Vercammen J, Debruyne F. Acta Otorhinolaryngol Belg. 2001;55(1):49-55.

 Voice Onset Time Production in Older and Younger Female Monozygotic Twins
Jack Ryalls, Heather Shaw, Marni Simon. 
Folia Phoniatr Logop 2004;56:165-169.

 Voice stress evaluators and lie detection. Hollien H, Geison L, Hicks JW Jr. J Forensic Sci. 1987 Mar;32(2):405-18.

 Voice - How humans communicate? Manjul Tiwari and Maneesha Tiwari , J Nat Sci Biol Med June 2012

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361774/

Free article

 Patient perceptions of factors leading to spasmodic dysphonia: a combined clinical experience of 350 patients. Childs L, Rickert S, Murry T, Blitzer A, Sulica L. Laryngoscope. 2011 Oct;121(10):2195-8.

 

Meditation and dystonia: an insight from a lady with blepharospasm

Meditation refers to a family of self -regulation practices that focus on training attention and awareness in order to bring mental processes under greater voluntary control and thereby foster general well-being and development and/or specific capacities such as calm, clarity and concentration.…( Walsh and Shapiro, 2006, quoted in Wikipedia on meditation http://en.wikipedia.org/wiki/Meditation

Several recent studies have shown the influence of mindfulness meditation on brain morphology. In particular, Britta et al (Soc Cogn Affect Neurosci. 2010; 5: 11–17) has shown the influence of an 8-week mindfulness-based stress reduction intervention on the changes in amygdaloid gray matter density, which is a part of the brain involved in response to stress.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2840837/?tool=pubmed

Patients with dystonia have all experienced the worsening of their dystonic symptoms with stress and Henry Meige at the beginning of the 20th century adviced his dystonic patients to have a regular, calm life to avoid fluctuations in the severity of the cervical dystonia.

The dystonia itself is source of great frustration and stress for the patients, who are limited in their daily tasks (walking, reading, eating, speaking, writing) by the dystonics spasms. In addition, professional and family life can bring a lot of joy , but can be also emotionally challenging.

Can meditation help patients with dystonia? There is no scientific study on that topic but I want to share with you the testimony of Anne, a lady with blepharospasm who has been involved in teaching meditation to groups and practices mediation regularly for her well being.

 

Testimony of Anne 

“I have had Blephoraspasm for 7 years, for me the most difficult things to come to terms with were

Ø Loss of independence

Ø Loss of career

Ø Not being able to drive when I wanted

Ø Learning to use Public Transport alone

Ø Fear of travelling alone

Ø Decrease in social activities

I went through a period of becoming almost house bound only going out with my son and friends.

Having worked as a senior Nurse in Mental Health for over 40 years I was very aware of the symptoms of stress and anxiety but had not fully appreciated just how much these symptoms were affecting my Dystonia, I had spent years as a CPN teaching patients and carers Anxiety Management but had not recognised the tell-tale signs in myself

First I had to accept that I had this disabling disorder and that I had to learn to manage the symptoms, I soon became more and more aware that any sort of negative stress or anxiety made the symptoms a great deal worse. It could be something really trivial and my eyes would start closing.

To assist me with relaxation I tried many different complementary therapies some helped some didn’t, we are all individuals, what will help one person won’t another. I also used anxiety management techniques to help, particularly when I went out i.e. shopping.

I also tried to develop new activities/hobbies that I could do rather than dwell on those that I had lost [not easy]

I had been interested in Meditation for many years and although I had practised this, it had not been in a very disciplined way, now I aim to sit for 30 minutes once or twice daily.

There are many different types of meditation and many definitions.

Meditation for me is about stilling the mind and looking within, facilitating a sense of peace and calmness

                                  Simple meditation exercise.

 The following is a simple method that I use with the aim of reducing stress, identifying tension in various parts of the body and assisting me in controlling negative thoughts and generally aiding relaxation

 Preparation for meditation

Ø Wear comfortable clothing

Ø Use a space for this purpose, a spare room or a corner of a bedroom whatever works for you importantly the space needs to be conducive to sitting quietly with an even temperature            

Ø Attempt to sit at the same time each day, this will help to establish a routine that will be easier to adhere to.

5 to 10minutes is fine to begin with. Don’t beat yourself up if you cannot achieve this.

 Sit comfortably on a chair with your back supported, feet flat on the floor [use a cushion for your feet if they don’t reach the floor] hands on your lap.

Close your eyes if this is comfortable.

Focus on your breath both the inhalation and exhalation [it is important to breathe normally not too deeply] Some people think of the word Relax as they exhale.

You will find that to begin with there are many distracting thoughts going round and round in your mind, this is normal, don’t worry about them let them come and go, just gently bring your attention back to your breath, this may be difficult to begin with but with practise it becomes easier.

It is impossible to think about 2 things simultaneously, as you focus on the breath the distracting thought will disappear at least for that moment.

You may feel fidgety at first, your body and mind need time to adjust to not worrying and rushing to do all the normal daily tasks, practise will help.

As you become more expert in the exercise you will observe which muscles are tenser than others. Gradually you will be able to sit for a longer period leaving you feeling more relaxed.  If it is preferable, quiet gentle background music could be played. Most types of meditations start with this type of exercise how long you sit and how deeply you go within yourself is a matter of personal choice

There are many articles and books re.Meditation for further research”

Anne

 

It will be interesting to hear the voices of dystonic patients from India for instance, where meditation is part of a long cultural tradition to know if they find it helpful.

Of course, I am not suggesting that meditation is a treatment of dystonia, or that meditation is good for everybody, but it may be a coping strategy for some dystonic patients when the stress in their life has a negative impact on the severity of their muscle spasms.