Since the age of 15 I have suffered from tremors in my hands, a tremor that was accentuated in moments of stress and strong emotionality. My father had the same disorder.
In 2008, precisely at the end of March, my son broke his femur and was hospitalized.
From that moment (but I only noticed it later) he completely stopped shaking in his hands and he switched to his voice. The first very evident symptoms began in May with hoarseness, difficulty speaking, head tremor when speaking.
In July I went for an ENT visit and the specialist told me that I had nothing on my vocal cords, no problems. He advised me to see a neurologist.
Which I did; also because my GP told me I had Parkinson's!
At the time the tremor was very strong, I could hardly speak, I couldn't make myself understood well by the people I spoke to.
Talking on the phone was madness: I had to keep repeating what I said and looking at myself in the mirror my head kept moving, as if to say yes, and I couldn't stop it!
At the end of October 2008 I was hospitalized for a series of tests to find out what caused this tremor.
It turned out that I had very high hyperthyroidism.
MRI of the brain gave these results: faintly hypointense signal alteration in all sequences of the basal nuclei.
Here is the discharge diagnosis “Hypophonia. Hyperthyroidism due to plurinodular goiter. Anxious-depressive syndrome”.
They ordered me drugs for gastroesophageal reflux and for anxiety-depressive syndrome.
In February 2009 I underwent thyroid surgery, but the Professor who operated on me, already during the pre-operative visit, told me that she did not assure me that I would start speaking normally again.
In May 2010, doing research online, I understood that mine could be either an essential tremor that had moved to the vocal cords or a dystonia.
I then made an initial visit to a specialist in Vicenza who prescribed Mysoline to me.
You could take beta blockers, but I tend to have low blood pressure so I can't take them.
Mysoline had no effect on me. So, at the next visit in December the specialist recommended trying botulinum toxin.
On July 28, 2010 I did the DAT SCAN exam with contrast liquid. Here is the diagnosis: the investigation documents substantially regular and symmetrical uptake of the presynaptic dopamine transport pathway at the level of the striatum on both sides.
In March 2011 I went to Milan to have a neurological visit to a specialist who confirmed the laryngeal tremor and advised me to try Mysoline again, indicating an alternative specialist in Milan for botulinum toxin.
On July 27, 2012 I had a videolaryngoscopy. Here is the report: In correspondence with the head tremor induced by phonation, tremor is observed in the entire laryngeal organ, as if due to transmitted movement, but never tremors of the glottic plane.
From March 2011 to February 2014 I periodically underwent treatment with botulinum toxin.
The last treatment did not give positive results, so much so that I abandoned the botulinum toxin.
From February 2014 to November 2015 I did not undergo any type of treatment. The disorder became more and more accentuated, so much so that I could hardly speak on the phone, especially in the evening, so much so that - in the end - I struggled to get the words out. It wasn't so much what others felt, but it was how hard I had to get the words out! I used to sing, now I can't sing anymore.
I couldn't modulate my voice, it either came out very high or it came out very low, I absolutely couldn't modulate it!
In 2015 I did not have a certain diagnosis of my illness. It was always diagnosed as essential tremor.
I went to see the forum on the dystonia site and found that there were patients who had had botulinum toxin administered by the same specialist indicated to me in Milan, with appreciable results.
I also read that – so say those who tried it – the result of the treatment depended on who did it and how they did it.
I contacted this Doctor to do botulinum toxin. She answers me by making an appointment for a visit on November 18th.
On November 18, 2015 I had the specialist visit with her and - for the first time since 2008 - I had the diagnosis of my disease "adductor-type laryngeal dystonia associated with tremor (rare disease)" Finally! At least I knew what I had!
But the bad news was that it's not curable, only botulinum toxin currently does anything.
I decided on botulinum toxin: on December 1st I went to Milan to get the toxin!
At the same time I searched for a dystonia group on Facebook and found the group!
I also found a person, C., also from Vicenza like me, who also suffered from dystonia, but in another form!
A new world opened up to me, full of people who – like me – suffered from dystonias of various kinds, as I later learned.
C. let me know that a neurologist in Viterbo, who was experimenting with vitamin B1 associated with magnesium, said that she seemed to be able to make these spasms that didn't make me speak, that I couldn't control, disappear.
I called the doctor that same evening and he made an appointment for December 2nd!
There I met this exquisite person. He made me a film, confirmed the diagnosis, and already gave me the first injection of vitamin B1. He wanted to see me two hours after the injection and told me that I could already see the signs!
Since I have been treating myself with vitamin B1, the tremor in my head has stopped, my voice is low, but it has improved a lot. Especially the morning is good. Towards the evening I still struggle, but little by little it will improve I'm sure!
2016-2017
I continue with the vitamin. B1: 2 500 mg pills a day, which I find in the USA and which I get regularly, the tremor in the head goes away, but the jerky speaking does not go away.
In Conegliano, in 2018, I find a singing teacher who, with a German method, seems to cure voice disorders, but this attempt doesn't work either.
Also in 2018 I go to a speech therapist who also tries, there is a small improvement but, since I am also treating gastro-esophageal reflux, she advises me to have a check-up for reflux.
The following results from this check: acid reflux disease with orthostatic pattern and reflux-related ENT symptoms. They change my treatment, and after 6/7 months of treatment, at an ENT check-up they tell me that the vocal cords are no longer "inflamed"! Well, one less problem.
But the jerky talking continues, it goes on for days, but I struggle to make myself understood on the phone very often.
May 2019 arrives, I meet a friend of mine, whose daughter is an osteopath and she tells me that at a conference she met an osteopath who specializes in osteopathic treatment of voice disorders.
I looked for her on Facebook and found her! We write to each other and he sets me up for a first appointment, asking me to bring all the documentation.
I have the first visit in which he gives me a global and specific osteopathic evaluation of the laryngeal district and from there I start the treatments, little by little I get unstuck and my voice begins to improve.
The Osteopath tells me that it will take time, because we need to deconstruct these dysfunctional patterns, and so we continue, once a month I do therapy and I'm improving!
In October, at a neurological check-up, the diagnosis is the following: objectively laryngeal dystonia persists, while at the moment it is clearly attenuated and the dystonic tremor of the head is absent during the visit. I will say more, last week, talking to a psychologist friend about the head tremor, she told me that she sees absolutely nothing!
I still can't modulate my tones, I'll have to go back to the speech therapist, however, especially in recent times, I can talk on the phone, keeping my tones low, without straining my voice, which comes naturally to me.
On December 29th, at a lunch, a friend told me that I speak very clearly. I still struggle, especially when I go a long time without speaking, and if I get tired, especially in the evening, my voice no longer comes out but I'm happy with the result achieved and I hope it improves!