Gastric /Vocal / weak voice etc. general

[cathyh]

Thanks for the replies it is more than reassuring that I am not the only one. And that salivary thing happened to me with my dentist I nearly dies with embarrassment lol xx

[meggy.nut]

I've only had the excess saliva problem when I have a cold...not fun. Additionally, I tend to mumble when distracted or tired and have to work really hard at enunciating my speech. Although I haven't been officially diagnosed, I have IBS and acid reflux. The doctor gave me some Nexium, but it's not really working.

I've always had occasional trouble swallowing, but it's recently gotten much worse. I dislocated my jaw (first time ever!) a few weeks ago, and since then I can't swallow anything that's not liquid or coated in sauce. Sometimes I have to hold my jaw when I'm chewing or it tends to crunch/sublux.

Does anyone have any advice on how to cope?
Thanks!

[Finarda]

Meggy.nut, the only thing that I can think to help is to see if there is a Head, neck and jaw physiotherapist in your area. I go to one and it has helped a bit.

My son had been seen by a speech pathologist recently for articulation issues and was also diagnosed with voice issues. His voice is normally growly and rough and he clears his throat quite a bit. If he gets too excited and yells it will sometimes just give out entirely. His breathing was also weird - he couldn't sustain saying the sound "s" or "o". He's now been referred to the speech pathologist who works through the school system.

Fiona

[Spireite]

I used to suffer with excess saliva for years and I don't anymore thank goodness. I think the improvement correlates to improving my neck enormously, and that is closely connected to the jaw. There's no quick fix but prolotherapy to the neck has been the main help. Also generally improving the rest of the body as the head just balances on it, and controlling any overpronating problems, which is a gross oversimplification but probably enough for this thread.

[meggy.nut]

Thanks!
I saw an internal medicine doctor last week, and she referred me to a speech pathologist. I see them on the 8th.
I also see my (new) rheumy on Dec 1. Hopefully between the two of them and i, we'll figure something out.

[cinders]

Well i just googled 'vochal chord problems and eds' and it brought me back here!

I had nodules on my vochal chords when i first started teaching and had them removed. 13yrs later and had problems on & off for 13yrs i had the same op again on the 1st Oct. I expected to be able to have the surgery, rest voice and have a bit of speech therapy and get back to teaching again. Well 2mths later and still struggling. I managed one day back at work but by the afternoon i had the squeaky voice. I am managing to rest my voice during the day but once the kids get home from school it's not easy. I'm not even raising my voice. Tonight my throat feels tired and strained and that lump in the throat feeling. When I saw the ENT specialist last wk he said the chords were inflamed and getting or forming a pollopus (spelling????) state. Feel like i am going round in circles. I can not survive in a classroom and am now thinking is this going to be a permanent thing? Will i need a change of career? Erm a job that is light on the voice and light on the joints and pays reasonably well. Any ideas? seriously though i have no idea what else i can do. Maybe if i can get my voice to a normal state i could consider one to one teaching.

specialist is great though he really wants to get me right. Going to get my thyroid tested too but he suggested maybe there is a link between HMS and voice problems. Thing is now where do we go from here??????

[Stone]

Well i just googled 'vochal chord problems and eds' and it brought me back here!

Try this. Fixed your spelling

Stone

[lil_miffy]

Both my parents and I have voice and throat issues but iv never put them down to our eds before.

I didnt start talking till i was 4 years old! I was taken to a speech therapist and everything. they basically said that I just didnt want to talk but when i did eventually start talking i talked very quitely and only when i had to talk. i didnt converse. I dont know why becuase i cant remember if i was in pain or anything but intresting that i was so late talking.

Iv always been a 'drooler. Its not as bad now but as a kid my pillow would be soaked every night from drooling. Its not as bad now but i sleep on my back mainly now. If i do end up rolling onto my front or side there is a patch on the pillow when i wake up and my mouth is all gooey.
Again I never put it down to eds.

My dad chokes all the time when he's eating and both mum and dad get coughs and sore throats all the time that disapear very quickly.

Im a singer so I breath properly using my diaphragm and core muscles all the time. As a result its my lungs and diapgrahm that do the work when i have to raise my voice or talk for a long time. Just like singing my throat and vocal chords arent as strained as people who control the volume of their voice with their throat rather than their diaphragm.
My singing voice is very powerful for my little selfbut I rarely get throat or vocal chord issues from singing becuase it all comes from my diaphragm and lungs rather than any strain on my throat. I have to do loads of warming up before singing. I spend about 20mins doing whole body warms ups like stretching and moving to get the blood flowing. I then spend ages doing lots of throat, neck and head exercises to loosen and warm up the muscles in my head and throat. I also do special massage on my neck and face to further relax the throat and face and relax the vocal chords. Doing this poperly also relaxes my facial and head so that the empty spaces in my skull like the sinuses etc are nice and big for resonating. This adds more volumeand takes more strain away from the throat.
I also have to look after my voice when im not singing if i have a gig coming up and while im singing or doing lots of speaking there are certain rules I have to followin terms of resting, water and posture. Its all of this that keeps my voice healthy and means i dont strain or damage it, dont get vocally tired etc. If i dont warm up prperly or get slack on the rules i get a very achy jawand sore throat.
Again i never realised that Iv probably being doing alot of EDS vocal care without realising.

I have information leaflets on vocal warmups, good vocal health, vocal first aid, and vocal pacing that I gave to my students when I used to teach singing. I am happy to adapt for the HMSA. They would be useful for anyone who has any vocal or throat strain problems, or people who need to speak alot and struggle becuase of the hms/eds.

[beneathsun]

I'd like to see a pamphlet on voice and EDS. I used to teach ESL and found that I couldn't do as many hours as my friends since my voice would give out. After I got the diagnosis for HEDS I figured that issue was probably related to loose connective tissue.

[cinders]

AHHHHHHHHHHHHHHHHHH! This is now the 4th time I have tried to reply! I will make it short now .
Stone - thanks for the link. I t wouldn’t allow me to view the actually report but have sent the link on to my speech therapist.
Lil-Miffy - a leaflet or pamphlet if it will help is a great idea.

In the last newsletter there was a questionnaire from someone researching voice problems in EDS/HMS patients. I thought I had sent it but hadn’t so couldn’t be used in the research but I did receive a lovely letter in reply. The findings will be in spring newsletter and it seems there is a higher incidence of problems in those of us with HMS/EDS than those who don‘t have EDS/HMS.

I am going to take the letter with me when I see the ENT specialist on the 23rd but not sure what this means now in terms of getting my voice stronger for teaching. I can’t think of any other job I could do that is not too demanding on the joints or the voice. ( A librarian springs to mind lol but think I would be on my feet all day which is no good.) It’s over 2 mths since I had the nodules removed and didn’t have any problems like this 13yrs ago when I had same op. (Long b4 HMS diagnosis). When I last saw the ENT he said my chords were slightly inflamed but were lax which is why my voice was either breaking or squeaky. The laxity makes me think this is more HMS related than we first thought. Should get blood test results back later today too that should rule out any other problems or causes.

Thanks anyway for the advice and links. Hope this is the last time I have to write this.

[cathyh]

All really interesting, things that we think no one else would understand can be put down to hypermobility. I couldnt believe no one else in my chorus didnt have the same problem as me I thought it was normal to constantly feel the need to swallow whilst singing. Well since then I have given up singing. Sounds defeatist but they are a gold medal chorus and I just didnt feel up to it. I have however started a pilates class where the trainer is really good with hypermobility issues and she is teaching us how to stand with a neutral spine. The interesting thing was to lengthen and relax the neck and throat you tip your chin forward slightly I have a tendency to lift my chin tipping my head back slightly which stresses the throat muscles so maybe this posture has been my problem...time will tell! Take care Cath

[cinders]

Thought it was about time I updated in here.
Well I saw the ENT again last week and although I can now manage to talk ok one to one I am still struggling in noisy environments and it means if i go into a supermarket, shopping area, classroom ( I usually teach!) kids parties etc I am struggling. I can't project, shout, raise my voice, argue!!!!

There is another procedure he may have to do as he said the chords are lax (HMS again!!!!) but no guarantees it will work but when I asked what the risks are he said the only risk is it might not work, I see him again in 6wks and I expect he will decide then but for me I think I have to try it as for now I am finding it hard to work. I am only really able to manage one to one tuition. Really struggling financially with it all which causes more stress and then this affects my voice more!

[cinders]

Update

I had another op on July 20th to remove polyp off my vochal chord. Have had to give up teaching now completely. Am still struggling and feel I am just going to have to learn to put up with this along with all the other HMS issues. Struggling to find a different speech therapist i can see without having to pay privately since money is tight. If i go back to the NHS system I'm likely to get seen by the same speech therapist I saw before the last 2 and between the last 2 procedures but she seemed to think it was all stress based and wasted time trying to council me which is more frustrating. The stress is down to the fact I can't talk properly. We all get stressed but we don't all have vochal problems. I think seeing her has been a complete waist of time. I wouldn't be surprised if when I see the ENT again he says I have polyps or nodules yet again. I don't think I could go through having a 3rd procedure in such a small space of time. It's the keeping quiet for a good wk after the procedure that's a nightmare with 2 young children.

Meanwhile my gp is filling in sick notes as post op ENT but not sure how long I can get him to do this for. Even without the vochal problems my joints and pain are such at the moment that i'd struggle to hold down a job. I seem to tired all the time these days.

[lollipop]

Just been reading this and its rather interesting.

I often loose my voice, more so over the winter months or if I get poorly. I think some of it can be stress related, a switch i can turn on and off in my head, my way of coping.

[cinders]

A lot is stress yes. If I'm watching a weepy film I can physically feel my throat tightening up but I also feel there's a load of other stuff going on. My chords are too loose or floppy that the ENT could see. I also feel like I'm running out of air when I talk. My breathing is not always right. I know I don't always breathe using full diaphragm