Hi,
Since having COVID19 in March 2020, I have had a croaky voice that seems to flare on exertion. It’s now my main indicator that post-exertional malaise is on the horizon. My voice starts to ‘go’ about 20 minutes before I start feeling like I am moving in slow motion and my rainbow of symptoms start flaring.
It’s been a long road to getting a referral to a Speech and Language Therapy department at my local hospital. Firstly, Speech and Language won’t accept referrals until an appointment has been had with the Ear, Nose, and Throat Department (ENT) to rule out nodules, etc. ENT won’t accept referrals unless a patient has been on acid reflux medication for 6 weeks to rule out acid reflux as the causal factor. Add to that lengthy waiting lists and this ‘pathway’ has been on going for a year or so.
**Edit**
I should say that during my previous 15 years of having M.E, I’d had different voice issues. I had periods of huskiness and occasionally lost my voice altogether. When this problem started in 2020, I had no idea that some fellow pwME had the exact same problem ie. croaking, because the vast majority of pwME do not post videos of themselves like I do!! I hadn’t heard how other pwME ‘croak’. As this is a new problem for me, I am listening to what the Speech and Language Therapist is telling me though I fully recognise that there could be a ‘M.E-related cause’ that ‘healthy people’ do not experience. It could also be caused by Mast Cell Activation Syndrome (‘Hoarseness can be a ‘symptom’), since having COVID19 I have many ‘traits’ of MCAS so it is a possibility. I am going to participate in this therapy with an open mind and hope that I can improve even a little bit.
I had my first appointment with ENT in January 2022. During this appointment, an abrupt ENT Consultant with limited bedside manner, put (read: forced, pushed) a camera up my nose and down to the top of my throat to see my vocal cords. The camera was in place for 5 seconds before he whipped it out and said ‘there is nothing physically wrong with your vocal cords, I’ll refer you to Speech and Language for some therapy’. After waiting 6 months for the appointment, I was both relieved that my vocal cords were ‘ok’ and annoyed at the speediness of ‘care’. I had my second ENT appointment (for ongoing Eustachian Tube pain and inflammation) 2 weeks ago and this Consultant was awesome. He explained how to breathe through the ‘camera up the nose process’ (I’ve forgotten the name – sorry!) and explained in non-medical jargon what is going on inside my head (grateful!). So if you have had a ‘camera up the nose’ procedure like my first one, I can reassure you that there are ‘less bad’ ways of doing it! Not related to my speech issue, but this second Consultant confirmed that my Eustachian Tube is still inflamed, the surrounding lymph nodes are enlarged/inflamed and suggested treatments (Nasal douches SUCK). None of which was offered in January when the problem was first spotted. I was just told ‘your Eustachian Tube is inflamed’ and it would go away in time.
Back to the speech issue, I had my first Speech and Language Therapy appointment 2 weeks ago. Sam, my therapist, was fabulous. This session was mainly educational and Sam talked me through the ENT/Speech and Language pathway, showed me how the throat and vocal cords work using diagrams, and explained how she MIGHT be able to help. Sam said she couldn’t promise to make my voice ‘better’ and I reassured her that any improvement would be welcome but I wasn’t getting my hopes up!
Sally’s Top Tip
Because I am aware that my voice issues coincide with PEM, and that I always rest before hospital appointments to make sure I am not going through PEM so I can communicate effectively, I KNEW my voice issues would not be present during the Speech and Language Therapy appointment. So, in the week before my appointment, I recorded myself croaking so the therapist could hear what my ‘croakiness’ sounds like.
This is the video I played her AFTER we had recorded me reading a story out loud in my ‘normal voice’ (that was only slightly croaky). She agreed that it was beneficial to hear the problem for herself as she never would have heard it during our sessions.
WATCH – https://youtube.com/shorts/bPSKa2kqhe0
I would recommend recording your voice to any pwME who is referred to Speech and Language Therapy, it saves energy if they can hear the problem rather than you try to explain what it sounds like!
Muscle Tension Dysphonia
Muscle tension dysphonia is a change in the sound or feel of your voice due to excessive muscle tension in and around the voice box. Same believes that I hold a heck of a lot of tension in my throat area. Given that we are in a pandemic living with unusual life stressors on top of the usual day to day tension, I would not be surprised!
I made it clear that my croakiness fluctuates and Sam said that muscle tension Dysphonia is variable and unpredictable and so, although in me it is an indicator of PEM, it fluctuates in non-M.E affected people too.
Read all about Muscle Tension Dysphonia here.
Glottal Fry (Croaky)
I have Glottal Fry! Apparently I have something in common with the Kardashians….though they have it through choice! (Why anyone would deliberately make themselves sound like a frog I HAVE NO IDEA!!)
This extract is from McKinney, James (1994). The Diagnosis and Correction of Vocal Faults
‘Glottal fry also known as vocal fry is caused by air escaping through the vocal folds which causes small irregular vibration. This vibration causes the voice to sound slow, low-pitch, “raspy”, and / or “hoarse”. Many people produce glottal fry toward the end of the day due to overuse of their voice. Glottal fry may also happen at the end of a long phrase when it feels like most of the air has been depleted.’
I tried to find an article to share but it was all about the Kardashians and choosing to speak like this so I didn’t feel those articles were a good fit!! Please feel free to do your own online searches if you want to know more.
My therapist, Sam, said that Glottal Fry in me =
- Low air flow
- Tension
Causal factors of Glottal Fry can also be:
- Dehydration
- Excessive talking
- Breathing pattern issues
I explained that I have been tested for Diabetes (negative) due to my excessive thirst and have been drinking 4 litres+ every day since March 2020 and my voice ‘goes’ even when I have barely spoken all day, and so it’s not linked to excessive talking. Sam checked my breathing (as did the Long Covid clinic Physio a year ago), I breathe ‘normally’ so it isn’t a breathing issue either.
Sam explained that the voice is a barometer of overall health: physical, emotional, and spiritual. Think of when ‘healthy’ people have had a really long exhausting day, you can tell that they are exhausted by the way they speak softly and sound unusual in terms of volume and pitch – ‘You sound exhausted’.
I have been booked in for 4 further sessions of Speech and Language Therapy, Sam has reassured me that when she says ‘voice exercises’ she means tasks, I won’t be asked to do anything strenuous but we will monitor how much energy these tasks require and adjust accordingly.
I do not like sounding like a frog so am hoping that therapy will help to improve my voice but, as it is linked to my PEM, my optimism is limited. You’ll all be able to hear how I am doing during my Facebook/Instagram Live videos and podcasts – I have been reluctant to record anything ‘professional’ for a while because my voice ‘goes’ fairly quickly. Hopefully, I (and you) will hear some improvement soon!!
Check out the British Voice Association website for more info.
Love
Sally
and Foggy (OBVIOUSLY)
REMINDER
‘Foggy’s A to Z Adventures Around The UK continues! Foggy’ campaign has been paws-ed for a week or so while we wait for a Foggy-sitter to host him on adventures in somewhere beginning with the letter ‘O’ (Town, city, landmark, or event in the UK). Get in touch if you can help! Thank you Contact Sally via mefoggydog@gmail.com.
This campaign has raised £473 so far – please donate here if you haven’t done so already. Foggy is raising funds for M.E biomedical research with Cure ME/MECFS biobank.
