Does anyone have TMJ disorder? (Ear/joint)

[sarahjsdddd]

Hi all,

I wanted to ask if anyone has this disorder, I think I may have. Had several ear infections (and symptoms of with no infection present) this year, pain in my jaw, I clench my teeth in the night without knowing, my jaw clicks/cracks and pops loudly, earache, ringing in ears. Plus fluid in my ears (definitely no infection) which might just be allergies but could be related.
What symptoms do you have and any treatment you have had? X

[Starrr123]

@sarahjsdddd how are you now ? Currently feeling the ame :( ear started ringing a month ago! Awful pains in neck ear and head jaw :( how are you? X

[lifetooshorttospendpanicky]

I have had this this year due to trauma.

Osteopathy sorted it (acupuncture would work too I think)

Physical therapy all the way for me!

[sarahjsdddd]

How is everyone?
I've noticed recently that wearing a hat outside makes a gigantic difference, almost stops the pain when it's cold (seems really obvious, but i always think I look horrid in hats - now I don't care ) yesterday I forgot my hat and the pain was so bad after about 15 minutes. If I keep my ears covered with a hat I don't get any pain at all x

[goose1964]

My son has this, he finds food that need a lot of chewing. sets his off.

[opalescent]

This is me. It's so miserable, it has pretty much ruined my life over the last year. I grind and clench at night. I cracked a tooth last year and had to have it removed- it was a very visible one 😫. I've really struggled to find something suitable for a replacement, as my continual grinding affected the bridge that my dentist tried to put in. I currently have a gap 😭.

To make matters worse, I think I may have cracked the next tooth along, or at least killed the nerve through continued grinding.

I'm really scared I'm going to continue to lose teeth if I can't get it under control.

Awaiting a max fax appointment.

Botox didn't help much

[Sunsetdawn]

Mine has been quite bad lately, and I'm waking up with headaches that make me feel sick. And then I can go for days without any trouble at all.
I'm sorry to read that this is so common. Stressful times we live in, perhaps.
I am seriously considering the botox route @wfrances.
I've also done the hot/cold stuff.
I have a new, thicker mouth guard and I think it's better for protecting my teeth (which have become hyper sensitive) but I seem tense my facial muscles all the more
I did see a consultant at the maxillo facial unit, but at the time it wasn't too bad. She did say she'd be happy to see me again if necessary, so I will ask doctor for a referral.
It's miserable having pain all the time. I feel for anyone suffering chronic pain.

[wfrances]

I have Botox on the nhs for this .
My dentist referred me to max/facial . I had scans and xrays then I treatment plan of nortriptyline and exercises, and a lot of don't s.
No shouting , do nt sleep on the affected side , don't open mouth to wide to eat. , use alternative heat and cold press.
Nothing worked , I had a mouth guard , didn't work.
Opiate painkillers and diazepam take the edge off but consultant advised Botox. I have to have it approx every 6/8 months
While it works, I will need it for life , if it stops working I will have to have an operation.
I've had it twice now and after the initial needle trauma it seems to be working for me. I still suffer and have pain but not like before and my jaw functions much better . (It had started to spasm and clamp shut and I couldn't open it, so couldn't eat or speak )

[SunFlowerRose]

Sarah i often wake with pain or aching there.

Weirdly I've reduced my tablets to 1 per night and it seems to have helped again? Not sure why.

I'm now down to no painkillers or just 1 ibuprofen per day currently which is a really big deal.

I'm trying to get out of the habit of taking painkillers before bed when I stay with my partner (hes my bubble), because I'm such a light sleeper and I worry that I will not sleep.

[Rudolph98]

Yes I do. Not officially diagnosed until recently and due to covid not a lot has been done. They have given me a book or exercises to relieve the pain. I also have a mouth guard custom made by dentist to try and ease the clenching. Thankfully my teeth aren’t damaged (yet). recently had a hospital app. The consultant refuses to help further until I seek help with my anxiety which is causing the jaw clenching. I have all the symptoms you explain. Has an awful awful headache today with it.

[NaToth]

Diagnosed by my dentist on Tuesday. Have been crying with pain most of the day. Have given up trying to eat. It's awful and just makes the pain worse. Contemplating A&E tomorrow.

[sarahjsdddd]

So sorry to hear how uncomfortable it is for everyone, I wasn't expecting so many replies! It does seem like there's not much out there in terms of treatment :( I notice I'm clenching my jaw all night, then I have a headache most mornings when I wake up. The sides of my head above my ears and temple feel very tender, does anyone else have that?

[SunFlowerRose]

Rupert I'm sorry I have no idea how to tag you.

The main side effect i get is a very dry mouth. But that's not a huge bad thing it just encourages me to drink more.

I started off taking 1 tablet which is 10mg and it really did help. 2 weeks ago I upped that to 20mg and if I really struggle with sleep I can take 30mg as a one off.

Unfortunately this week my jaw has been almost constantly going into its default position which causes the pain. It sort of puts itself into a clenching position and when I notice I have to consciously put it into a relaxed position, but as soon as I'm no longer focusing on it, its back into clench mode.

This time of year is a stressful time for me anyway along with covid and I've just started studying around working full time. So I suspect that's the reason why I'm suffering this week. However I do think without the tablets at night id be suffering so much worse now and most likely have migraines.

The doctor said it doesn't always fully get rid of the pain and to take painkillers when needed. And I came off those about 2 weeks after starting on the tablets.

I'm back on the pain killers this week but I'm hoping that will only be temporary. I did visit the emergency dentist last week too for 2 temporary fillings and thats always a big trigger for days of pain.

I guess what I'm saying is try them for a few months and see if they help. But any side effects you feel are too much then speak to your doctor.

[RupertTheBear89]

I was prescribed amitriptyline 10mg last week @SunFlowerRose. Do you find it helps much? I'm a bit wary about taking it as heard the side effects can be a bit rough. I was advised by my dentist to alternate heat and ice to the area. Don't know if that is something you've tried but might be worth a go.

[SunFlowerRose]

I have this, but there doesn't seem to be any perfect treatment for it.
I've been prescribed amitriptyline to take before bed to help me sleep and its meant to help the pain also.
I clench my jaw in my sleep which seems to be the cause. I've tried mouth guards but they seem to make it worse.

I can go days with no pain and then like now I can have it weeks straight. I suspect stress has a part to play.

My doctor said he can refer me to a specialist but that there is not much they can do.

I've been given exercises to try but don't find them helpful.

[RupertTheBear89]

Thanks for the reply @Roselilly36. I'll look into the slimfast. Im glad your tmjd isn't too bad at the minute, hopefully it will stay like that. They're both such horrible disorders to have. Would you find that either condition manifests as toothache? I'm due to get a couple of teeth removed but have been told the dental pain may not go away

[Roselilly36]

I have either slimfast or complan, I keep spare slimfast shakes in the fridge for really bad attacks. I hope it eases up for Christmas, fingers crossed I am not too bad as far as TMJ is at the moment, but I am very careful with what I eat, nothing too chewy.

[RupertTheBear89]

Hey @Roselilly36, I have tmjd also and being investigated for TN too. Can't eat soft foods at the minute either, just drinking milkshakes which isn't ideal as its leaving me run down. Can I ask what meal replacement shakes you take? Was considering complan but also conscious that many of the fortified drinks can contain excess vitamins and minerals when taking more than 1 or 2 a day

[Roselilly36]

I have TMJ & TM, it varies for me when the TMJ flares up, I can’t eat food, even really soft foods are impossible for me to eat, I drink meal replacement shakes. TM also comes in flares for me, painful but also causes a numb patch on my face. I also have Multiple Sclerosis , so I have scars on my spinal cord & lesions on my brain, so I expect these conditions could be related to my disability. They are really miserable I agree. for everyone.

[HalfSquareTriangle]

I have had this on and off for years - cracked two of my back teeth from grinding so hard at night and at times could barely open my mouth to eat, horrible!

I tried using a mouth guard but it was so uncomfortable I couldn't sleep and didn't stop the jaw clenching, just protected the teeth from damage.

What has helped me is seeing a good physiotherapist, he releases all the tension in the shoulders, neck, base of the skull and works on the jaw muscles themselves - I would really recommend trying this, I haven't had any major problems since. Good luck!

[Sunsetdawn]

@121Sarah121 I'm sorry, I missed your post. That condition sounds life altering. Did it come on suddenly? You have my sympathies, it sounds awful

[Sunsetdawn]

That does sound like more than the person I went to did. I don't think he was very experienced. Seemed quite startled at the prospect of putting needles on my head.

I have found the massages on the video posted above very helpful and I seem to clench less when I sleep if I consciously soften my jaw during the day, and as I settle down to sleep.
How is everyone else getting on?
@sarahjsdddd have you had any luck?

[olderthanilookapparently]

Hi needles all over from my feet, in my tummy, wrists and temple and jaw too. He also did some massage of sorts! It definitively helped

[Sunsetdawn]

That's very interesting @olderthanilookapparently It didn't help me a lot. Can you tell me where the needles were place. I expected them to be in my face/shoulders, but he mostly put them in my wrists and ankles

My relaxation techniques seemed to work yesterday. All comedy listening and viewing, and ignored the news. Also had a late walk, and took herbal sleep tablets. Had a better night and my jaw was more comfortable on waking.

[olderthanilookapparently]

I have just started a treatment with an acupuncturist which has really helped my jaw pain. Hopefully getting me out of a cycle of stress, clench, ache, stress, clench.

It's been a lot better since I saw him and he was quite aware of the issue.

I was a complete sceptic until I tried (this is not a cheap solution though)

[MumblesHereMumblesThere]

I have found my people!

Right ear has felt blocked / muffled for 2 years. I saw a couple of doctors last year but got nowhere and since covid I haven’t bothered going back. It felt like I had an infection / fluid but they said not. My hearing isn’t great and I get terrible tinnitus.

I also have a wonky jaw and a mouth guard from dentist but no pain or clicking / locking.

About 3 years ago I had a wisdom tooth removed from the right side - perhaps there is a link?

I produce a lot of phlegm in my throat - it’s really gross. Tastes disgusting.

I get headaches, earache, and neck pain. My skull crunches a lot and my neck clunks. My ear pops and squelches.

I have also lost my sense of smell.

I wonder if these symptoms are all linked or if it’s just a coincidence.

I have tried various nasal sprays, antihistamines, decongestants, etc etc but never got anywhere. Kind of resigned to it now.

Am reassured I’m not alone having read this thread, but would love to get to the bottom of it!