Gastric /Vocal / weak voice etc. general

[nonyanomemory]

Hoarseness/Weak Voice
The vocal folds are composed of layers of tissues, easily bruised and strained due to tissue fragility and weakness.  The lungs are also affected in some with EDS, leaving some with a limited capacity to produce the appropriate intensity for speech.
Due to problems with speech and hearing, some individuals with EDS may seek speech therapy. Since each type causes different symptoms, therapy should be planned around each client. 

Goals for therapy could include:

¨Articulation: increase oral-motor strength of weak articulators, increase breath support for better airflow, speak at a slower pace with shorter utterances to increase intelligibility 

¨Swallowing difficulties: take smaller bites of food and better prepare the bolus for one clean swallow, practice a double swallow if needed, maintain good neck posture

¨Voice disorders: perform vocal warm-up exercises before periods of prolonged speaking, practice good vocal hygiene behaviors to maintain the health of the vocal folds, breath from the diaphragm instead of pulling the lungs in

¨Fluency: slow speech rate, use gentle voice onsets and soft articulatory contacts during speech

¨Hearing loss: receive a complete audiological exam, obtain an assistive device such as a hearing aid, and attend visits to an Audiologist for maintenance of the aids
Hearing impairment/Sensitivity
Hypermobility of the joints of the bones in the middle ear (malleus, incus, and stapes) creates problems with effective sound conduction across the middle ear.  This loss of energy in route to the inner ear leads to a mild to moderate conductive hearing loss.  Because the inner ear is also responsible for balance, improper function leaves some affected with bouts of dizziness.

it is important to remember that each persons experience of hms is different so it is not necessarily so that everyone with the syndrome has all of the difficulties some do have. It is reported that some with HMS find shouting impossible I can but it leaves me with no voice for a while which is pleasing for my other half I have lost significant singing voice - but have not concentrated on maintaining my vocal chords in any way and this in part could be the reason. Don't despair Adele I'm middle aged and you are young yet

nonya

[Guest]

I also have IBS , have done since my teens but control it with diet. i get a bit of heartburn but not full blown reflux and also lose my voice easily, though it is generally very loud (often without my realising it). my mother who has not been formally diagnosed with hms or eds (probably because she has so many other things going on the symptoms have been masked by other more obvious causes) has major problems. IBS is severe as is reflux, also her voice completely went , she has had to have her vocal chords stripped to remove damaged tissue, her bronchioles are twisted leaving her prone to chest infections also. we both also have reynaurds but hers again is far more severe requiring 3 monthly week stays in hospital for infusion treatment.she has so many other conditions associated with connective tissue which have worsened as she has grown older. i am considering asking her to push for a full investigation in relation to HMS as I am sure this would help with her future treatment.

[Finarda]

I just found this post from 2006 and it has yet again stunned me that a lot of the issues I've experienced with my voice are things that other people here have experienced. I can think of several issues I've had with various causes:

As a kid I could never sing in church as my neck and jaw muscles would just hurt and get so weak - turns out my lower jaw, in addition to being too small, is also misaligned with the top one. So in order to speak or sing properly I have to push my jaw into an unnatural position. I can sing quietly (allbeit tunelessly!) OK but not our loud. The orthodontist's recommendation was surgery to break my jaw every month for 2 years - er, I don't think so! I know someone who had it done and they regretted it.

When I shout or speak loudly for any length of time my throat gets irritated and starts to swell - I have to take my asthma reliever in order to bring down the swelling. My daughter gets the same thing.

I also have reflux and even though I take several medicines to prevent it I often get sore throats, and my voice gets hoarse. Often when I go to speak, just a squeak comes out until I clear my throat - it's really irritating and embarassing when I meet someone in the hallway at work and try to say Hi.

HMS/HEDS is darn complicated!

Fiona

[barkingmad]

I had to go for vocal therapy at the hospital a long time ago, because after laryngitis I stopped using the right vocals cords and ended up using the wrong ones and having permanent aching throat. It was a bit strange but effective....I sometimes have to restart the exercises they gave me when its achy again, its a bit like gurrning in the beginning. I wasnt happy either when it became obvious that this was due to my EDS...all these strange symptoms which nobody bothered to put together, I still get angry now!

[WinonaLemonade]

did anyone one else notice a distinct change in their voice just as their symptoms started because when i was little i had a really loud voice and could project myself very easily across church or the school hall so used to get chossen to do lots of speaking.
just before my shoulders started being really bad and dislocating several times a day, which were the first of my significant symptoms that stood out as being hms, my voice started to really decline and now i speak really quietly and can't project my voice at all and often get a sore throat from talking. unfotunatly i am now predominantly refered to as the quiet one who doesn't talk much.

[Rosie]

Hi all

That's an interesting one. I have always been known for being able to project my voice, but I am definitely noticing that I can't do it so much now, and if I do try then I quickly become hoarse. I don't think it is staining my vocal cords, more that it just isn't working as well as it used to.

Rosie

[nonyanomemory]

Rosie,
join the club!! I used to be able to sing, all that comes out now is a weak and embarrasing wobbly tune.

nonya

[rubygloom]

:whistle: did anyone one else notice a distinct change in their voice just as their symptoms started because when i was little i had a really loud voice and could project myself very easily across church or the school hall so used to get chossen to do lots of speaking.
just before my shoulders started being really bad and dislocating several times a day, which were the first of my significant symptoms that stood out as being hms, my voice started to really decline and now i speak really quietly and can't project my voice at all and often get a sore throat from talking. unfotunatly i am now predominantly refered to as the quiet one who doesn't talk much.

i could write this myself.... to the letter although rather embarrasingly you have phrased and spelt it better than i could wounder if it is worth bringing up? has anyone found the therapy helped with this issue at all?

i do sometimes have to phyche myself up to swallow as i get it wrong er like my muscles are getting their timing wrong if that makes sence everything is hard work and i sound horse like i have a very bad throat wether i actualy have one or not

[WinonaLemonade]

i think i know what you mean about swallowing, i choke on things sometimes and find it difficult to swallow because of not being able to make the muscles in my throat work properly, especially if i'm having a bad time of it.

i thought i got a sore throat with a cold early in the year but it didn't go away for about 5 weeks and i can recognise that that is what my throat goes like when it is worn out.

[cavemonster]

that's interesting about swallowing - as a child I used to tell my parents that swallowing just didn't work properly for me - red meat was really difficult to swallow - I would just chew for ever and eventually force it down. I seem to have adapted - perhaps I cook my meat differently to the way mum did, or maybe the problem has gone away. Still scared about the potential losing of voice power - I will just continue singing regularly in choirs with a hope that that keeps my vocal chords in shape!

[jojackson]

Fascinating to see this! As some people have already said, it's remarkable what doesn't get associated with EDS until you think about it!

I had to be intubated and on life support for a few days earlier this year (that's a whole other story) and when I was extubated, they said that I'd probably have a sore throat and hoarse voice for a day or two. I couldn't speak at all for a week, and my voice is only just now (almost six weeks on) starting to sound like me rather than a sickly Barry White.

Until that happened, I hadn't really thought about my voice, but it's true that when I'm really tired I have difficulty swallowing, and my voice tends to be very quiet.

Slightly off topic (apologies mods - feel free to tell me off and/or move this), but does anyone else find that they can't take a proper breath when lying down or very tired? It feels as though my chest and throat collapse in on themselves and I have to work much harder to breathe... I've also looked for any research on vocal cord dysfunction and/or breathing problems related to EDS/HMS, and though vocal cord problems have been reported and there seems to be a link between asthma and EDS/HMS, there's precious little else.

[tbirdAnni]

mod edit - quote removed, not needed
now that's interesting... I have over bendy joints (which give me a bit of stick but nothing serious) and *very mild* asthma, in fact you can barely dignify it with a diagnosis most of the time but when I'm tired it's like all my chest and back muscles just wander off to bed without me and breathing is really far more work than it has any right to be. My puffer perks things up reasonably well if I have to carry on but really all I need is a comfortable chair and a footstool and magically I can breath again, as soon as I relax back into the support I feel like someone has lifted weights off me. My dd (who we are waiting for a HMS diagnosis for) complains about her breathing sometimes but I'd never made the connection.

Adds another item onto list to take to Paed next week....

[cathyh]

Hi Everyone I never thought of HMS afffecting the throat or voice My problem is a have been singing in a very high standard choir as a bass singer. I have a fairly good voice but I have an embarrassing problem. My throat muscles feel weak I seem to have an excess amount of saliva which does not drain from my throat like other peoples so it makes me want to stop and swallow. This is imposssible when singing. Does anyone else have this problem? even when I am talking I seem to have the need to kepp swallowing and sometimes need to swallow really hard to get my muscles working.
Any response would so much appreciated thanks Cathy x

[pink]

I have it al the time cathyh and if anyone has a solution for tis I'd take it, its especially bad before/after/during a cold. Not been to the doc with it as not want to trouble her.

[Stone]

Hi Everyone I never thought of HMS afffecting the throat or voice My problem is a have been singing in a very high standard choir as a bass singer. I have a fairly good voice but I have an embarrassing problem. My throat muscles feel weak I seem to have an excess amount of saliva which does not drain from my throat like other peoples so it makes me want to stop and swallow.

That sounds quite familiar - I gave up singing and now can't without much the same thing. I've no solution but maybe it would make you feel better to know someone else is the same! (my orthodontist once described me as 'a salivary beastie' after I got him in the face while he was prodding about in my lower jaw )

My main problem at the moment is snoring - I'm eating more now it's winter and have put on a few pounds, seemingly all on my neck. My floppy throat and larynx now make such a horrendous noise my other half has moved into the spare bed

Stone