Sleep Apnoea and TMJD

Replies to This Discussion

Permalink Reply by Kath Hope on October 3, 2012 at 22:50

I've been looking into this Diane, as I certainly have contacts with Sleep Apnoea + TMJ, but most of them have already got TMJ before they were diagnosed with OSA.  Some have had it appear later though, after treatment.  One of the issues that does keep coming up is that using chin straps makes TMJ worse.  What mask are you using by the way?

I know that TMJ can be linked with bruxism (teeth grinding) which has a big link with OSA.  I also know people with TMJ who don't have OSA (as far as they know) and they get a dental appliance made to help with this.  One of my friends had to wear one for over a year, but seems fine now.

One of the OSA sufferers (Debbie)  from the US who is on our Facebook Page actually has an appointment about her newly-diagnosed TMJ tomorrow (4th Oct) so will be speaking with her after this and will let you know.

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Permalink Reply by Diane Baker on October 4, 2012 at 17:53

Hi Kath, thanks for the reply.  I have a Respironics? (sorry haven't the energy to go and look) but it is a full mask with chin straps.  I have checked the straps and they are certainly not tight and I have been using this mask for two years now with now problems previously.  Since this started I have been acutely aware of what's happening with my jaw when I am wearing my mask but all I can say is that I wake in the morning relaxed and pain free..... not what you would expect if the mask, or indeed Bruxism was the cause!  The pain starts within a few minutes of waking, when I start to move around and move my jaw.

 

I have a temporary relief at the moment (it disappears for a few days then comes back with a vengeance) - and I have a hospital appointment for early November so we will see what happens.  I have read so much about this over the last few weeks, enough to know that everyones symptoms are different and that there doesn't seem to be any specific cause...... or many specialists in the field so this could be an interesting journey !

 

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Permalink Reply by Kath Hope on October 4, 2012 at 22:36

I'm at my maxillofacial consultant in the morning, so I'll pick his brains for you and report back ;)

It doesn't sound like the CPAP has caused it though, but having said that, it probably won't help when the pain is severe.  However, pleased to hear you're having some temporary relief at the moment.

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Permalink Reply by Diane Baker on November 8, 2012 at 19:50

Not a wonderful hospital appointment.  To cut a long story short

He as confirmed that it is TMJD (progress) but says he can do little for me.

He is blaming my CPAP machine  even though I have had this checked out.

He rudely suggested that if I lost loads of weight I wouldn't need my machine

He also said I should have the operation on my throat so that I would no longer need CPAP - would not listen to the fact that I have been told they do not offer the operation locally, or that I in fact do NOT want the operation - I feel safer with my machine. 

He has decided I clench at night because of stress !! and has prescribed Ametryptiline (Anti Depressants) - I am still digesting everything and trying to decide if I really want to take an anti depressant ......  I don't understand how he can be so sure I clench at night when I wake rested and pain free in the morning.  I know I clench during the day because my jaw starts aching.

As I left he told me I had to have the operation and get rid of the CPAP machine and stop being stressed!!!!

I am thinking about my next move but I am very upset.

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Permalink Reply by Terry Vella on November 8, 2012 at 21:57

Diane, sorry to hear it didn't go well, I'm not a Dr but I would be getting a second opinion, he sounds totally wrong on pretty much everything he has told you. Losing weight will not cure SA, it will help your health in general though. Operations aren't a garranteed success and I believe are very painful. I too would be concerned about the antidepressant, I was on antidepressants for 2 years for my stress, anxiety and worry and it just made me worse because at that stage I had untreated SA and that was causing my problems. Dr's always like treating the symptoms and not fixing the problem. Sorry I may have made your decision worse but we need to take a lot of this in our our hands and if CPAP is working for you and you feel better than pre CPAP, I think you should stay on it, good luck. 

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Permalink Reply by Diane Baker on November 9, 2012 at 9:35

Thank you for your comments Terry.  Don't worry I have no intention of stopping my CPAP - and regarding the weight loss, the reason it shocked me so much is that he spoke to me as though I was a 20 stone blob, when in reality I am only 2 St. overweight.  I too have had anti depressants on and off over the years, which is fine if you are depressed...... but I am far from that - I will NOT be taking them in the foreseeable future.  I am considering making a complaint to the hospital and asking for a second opinion - but I am giving myself time to think things through first, and listen to advice from my TMJ support group before making a final decision.

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Permalink Reply by Terry Vella on November 9, 2012 at 20:30

Diane, well done, the weight is only a problem if you feel you need to lose it, if you are happy thats fine. Losing two stone is not going to  cure your SA. Do what your brain and heart tells you, we know ourselves what is best and right for us.

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Permalink Reply by Kath Hope on November 9, 2012 at 22:24

Sorry to read this Diane, and when I was at the same hospital dept myself last month and asked my own consultant about your issues, this was not the response I got, which just goes to prove how one consultant's opinions can vary to another's, even in the same hospital.

I totally agree with Terry, in that he was wrong on most issues.  Whilst Terry and I aren't medics or don't pretend to be, I would question your own consultant's medical competence.  An oral surgeon cannot diagnose depression, and I think you would know yourself if this were the case.  Added to this, prescribing anti-depressants to a sleep apnoea sufferer will usually worsen their sleep apnoea.  (This is not to say that someone with sleep apnoea shouldn't take anti-depressants as there are times in peoples lives when these are necessary, but Dr's are advised to prescribe the ones that can be taken in the morning rather than the evening).

Secondly, in most cases losing weight will not cure sleep apnoea, but will help.  When I was first diagnosed I didn't have a huge weight problem either (size 14) but I did manage to lose 2 stone and went to a size 12.  I had a further sleep study done and there was no difference whatsoever in the amount of apnoeas I was having when heavier.  However, I did feel healthier and liked my shape better!

As for saying an operation on your throat would cure you, that's not what our knowledgeable ENT and Head/Neck Surgeon friend, Dr Park's says, who incidentally is now a qualified sleep physician as well!  If your consultant was cured through just one operation, then that's great for him, but most people need more than one lot of surgery.  I have lost count now of people who have contacted me for help with CPAP who have endured very painful surgery which has failed!

If CPAP masks were what the consultant was blaming, then I would question as to why there aren't a lot more of us developing TMJD.  Also, there are a lot of people with TMJD through clenching their jaws and grinding their teeth, and undiagnosed sleep apnoea is to blame.  I do believe that if a person has TMJD then certain masks could aggravate the problem, and where possible nasal pillows type of masks could benefit people.

I rest my case, and am pleased you're considering complaining and getting a 2nd opinion.  Advice from the TMJD Forum will be interesting to hear, so do keep us informed please.

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Permalink Reply by Diane Baker on November 10, 2012 at 13:07

Terry Vella said:

Diane, well done, the weight is only a problem if you feel you need to lose it, if you are happy thats fine. Losing two stone is not going to  cure your SA. Do what your brain and heart tells you, we know ourselves what is best and right for us.

Thanks Terry - I think we know in our minds when something is right - and the situation I find myself in now is definitely not right for me.

 

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Permalink Reply by Diane Baker on November 10, 2012 at 13:12

Thanks Kath, I have decided I will definitely ask for a second opinion but have left this for a few days - I think this sort of letter is best written when the anger subsides.

 

To clear up one point, he gave me the anti depressants at low dosage to relax me at night, not because he thought I was depressed - however, as we well know relaxing an SA sufferer at night is perhaps not the best thing to do!

 

Comments I have recieved fromt he TMJD support group are similar, although they are more used to not being taken seriously by consultants so some of it came as no surprise.  Comments I have received about the Amitriptyline have cemented my decision not to take it though - the thought of waking up exhausted in the morning does not appeal at all, it would feel like going back to the dark ages before CPAP.

 

I will keep you informed as to how I get on  meanwhile we keep smiling
 
Kath Hope said:

Sorry to read this Diane, and when I was at the same hospital dept myself last month and asked my own consultant about your issues, this was not the response I got, which just goes to prove how one consultant's opinions can vary to another's, even in the same hospital.

I totally agree with Terry, in that he was wrong on most issues.  Whilst Terry and I aren't medics or don't pretend to be, I would question your own consultant's medical competence.  An oral surgeon cannot diagnose depression, and I think you would know yourself if this were the case.  Added to this, prescribing anti-depressants to a sleep apnoea sufferer will usually worsen their sleep apnoea.  (This is not to say that someone with sleep apnoea shouldn't take anti-depressants as there are times in peoples lives when these are necessary, but Dr's are advised to prescribe the ones that can be taken in the morning rather than the evening).

Secondly, in most cases losing weight will not cure sleep apnoea, but will help.  When I was first diagnosed I didn't have a huge weight problem either (size 14) but I did manage to lose 2 stone and went to a size 12.  I had a further sleep study done and there was no difference whatsoever in the amount of apnoeas I was having when heavier.  However, I did feel healthier and liked my shape better!

As for saying an operation on your throat would cure you, that's not what our knowledgeable ENT and Head/Neck Surgeon friend, Dr Park's says, who incidentally is now a qualified sleep physician as well!  If your consultant was cured through just one operation, then that's great for him, but most people need more than one lot of surgery.  I have lost count now of people who have contacted me for help with CPAP who have endured very painful surgery which has failed!

If CPAP masks were what the consultant was blaming, then I would question as to why there aren't a lot more of us developing TMJD.  Also, there are a lot of people with TMJD through clenching their jaws and grinding their teeth, and undiagnosed sleep apnoea is to blame.  I do believe that if a person has TMJD then certain masks could aggravate the problem, and where possible nasal pillows type of masks could benefit people.

I rest my case, and am pleased you're considering complaining and getting a 2nd opinion.  Advice from the TMJD Forum will be interesting to hear, so do keep us informed please.

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Permalink Reply by Diane Baker on December 12, 2012 at 11:42

Update - Thanks for all your support, it gave me the strength and courage to write a letter of complaint to the hospital.  I now have an appointment for 7th January to see Mr. Krank and the Matron for a prolonged appointment where we can discuss my problems and what happened with my last appointment.

 

I am pleased I pursued this as the pain has now shifted to my right jaw (since the dentist took the grinder to my teeth) and the pain is gradually increasing..... today it is t the worst it has been for weeks :(

 

When the Manager of the Maxillo Facial unit telephoned me I told her that I didn't feel it right for a consultant to bully me into surgery because it was 'what he had done' and that after years of waking up half dead I didn't want to take tablets that would knock me out.  She was in full agreement and very apologetic - said she would have words with the consultant concerned.

 

I will keep you informed as to my progress..... I think I still need to look at what other masks are out there Kath, I just haven't had time to think these last few weeks (hence my absence from the meeting)... but I will be in touch with you after Christmas.

 

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Permalink Reply by Kath Hope on December 14, 2012 at 0:54

Am really pleased to hear you've pursued this Diane, and hopefully you'll get the treatment (both medically and courteously) that you should have got the first time.  Hope the pain's not unbearable over christmas.

You are welcome to pop here over christmas (whilst you're not working) to see and try the masks we have, to see if we can get you more comfortable 

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