Development of Ear Myoclonus

[Street Spirit]

Not TTS...do I really need every miserable ear condition there is?

It just thumps away, not triggered by noise..My h is currently horrific (going on 2 years of ups and downs) blasted by a train the other day about 100 ft away..who knows what is going on..

Anyways, anyone else go on to develop Myoclonus? maybe its tmj related?

 

[cullenbohannon]

Hey @Street Spirit Lynn sorry to hear about this, yes i have TTS, have had lots of ups and downs and other complications from it, but today my left ear is drastically improved but my right ear not quite as much unfortunately.

 

[Street Spirit]

Hey @Street Spirit Lynn sorry to hear about this, yes i have TTS, have had lots of ups and downs and other complications from it, but today my left ear is drastically improved but my right ear not quite as much unfortunately.

Yea..well as I understand TTS, it's noise induced spasms. .where as my ear just thumps sporadically all day long..It doesn't hurt (thankfully!!) but is super annoying.

My bf last night, said he swears he felt my SCM muscle twitch at same time as my ear thumping..but I haven't noticed that today..

I need alot of tension release in all my facial muscles. .sometimes I think alot of of this is trigger points or nerve damage.

 

[cullenbohannon]

@Street Spirit Yup Ive had a lot of neck and facial spasming, but that has gotten better as well. I had a very sensitive point on the side of my neck, also the base of my skull and right below the ear. I had those massaged for months, and I dont know if that has had any direct effect but, i am doing much better then i was 4 or 5 months ago.

 

[Chelles]

@Street Spirit i have middle ear myoclonus and is not induced by noise, it drives me nuts spasming away for hours sometimes days. Have you tried any treatments?

 

[Street Spirit]

@Street Spirit i have middle ear myoclonus and is not induced by noise, it drives me nuts spasming away for hours sometimes days. Have you tried any treatments?

No @Chelles ...it just started. I take clonazepam 2mg a day. I believe I read benzos are sometimes effective but not on me. Can't do surgery (if it came to that) I have H. I am veing referred to ENT and my Neuro is checking me for SCDS.

My ears have gone bananas now...I'm almost laughing anymore..I mean really..H, T, pain, TTS, ETD, and now this? !

Just thumping away...argh..

does caffeine make yours worse? How long have you had it? Any advice?

 

[Street Spirit]

@Street Spirit Yup Ive had a lot of neck and facial spasming, but that has gotten better as well. I had a very sensitive point on the side of my neck, also the base of my skull and right below the ear. I had those massaged for months, and I dont know if that has had any direct effect but, i am doing much better then i was 4 or 5 months ago.

I have that too @cullenbohannon and starting PT..and seeing pain management for botox or steroid injections in May.

Hmmm..I wonder if this is stemming from my neck. It seem to start after eating. I bet it's TMJ..it's truly the only logical explanation..and when I say " TMJ" believe me, I am not just referring to jaw joints..I have constant pain points all over my head and neck, both confirmed by my Neuromuscular Dentist and Neurologist. One said fibro and referred me and the other chronic atypical migraine that stems from post concussion syndrome..I even havethe stomach issues that go with it..so alot going on..just don't know why my ears must get so involved. It's pissing me off!..must be nerve impingement or something. .

 

[cullenbohannon]

I have that too @cullenbohannon and starting PT..and seeing pain management for botox or steroid injections in May.

Hmmm..I wonder if this is stemming from my neck. It seem to start after eating. I bet it's TMJ..it's truly the only logical explanation..and when I say " TMJ" believe me, I am not just referring to jaw joints..I have constant pain points all over my head and neck, both confirmed by my Neuromuscular Dentist and Neurologist. One said fibro and referred me and the other chronic atypical migraine that stems from post concussion syndrome..I even havethe stomach issues that go with it..so alot going on..just don't know why my ears must get so involved. It's pissing me off!..must be nerve impingement or something. .

Got it, yeah i ended up having awful head pain, teeth pain, neck, and around the face. My doctor wanted to try Botox as well. I didnt leave my house for about 2 months, but somehow ive gotten better. I hope things start looking up Lynn, keep us posted.

 

[Chelles]

@Street Spirit I don't drink any caffeine mine seems to be set off by yawning or hiccups but it can also start on it's own. It got slighty better after I started taking magnesium and vitamin d. I also try to massage the area and sometimes use a warm cloth. Does the thumping go away if you put your finger in your ear? Mine does and the only way I can sleep is by using a foam earplug.

 

[Street Spirit]

@Street Spirit I don't drink any caffeine mine seems to be set off by yawning or hiccups but it can also start on it's own. It got slighty better after I started taking magnesium and vitamin d. I also try to massage the area and sometimes use a warm cloth. Does the thumping go away if you put your finger in your ear? Mine does and the only way I can sleep is by using a foam earplug.

Yea it does @Chelles weird huh?!!

My bf gave me a good massage last night and today no thumping. ..however my T is very bad and that isn't usual for me.to wake up too.. bad t and h..* sigh * I did also use a warm rice bag last night..thanks for the tips..

oh and drank caffeine today and no thumping, so that doesn't aggravate it for me..I thought it was..

 

[Chelles]

@Street Spirit mine isn't 24/7 sometimes I get breaks from the horrible thumping I hope yours stays gone!!

 

[Street Spirit]

@Street Spirit mine isn't 24/7 sometimes I get breaks from the horrible thumping I hope yours stays gone!!

Gosh, me too!! however as annoying as it is (and it really is annoyingly awful) I would take it anyday over H..I just want H gone..argh!! but now my T is worse and had been for weeks..so looks like it isn't leaving me ....yet... (still hopeful) I must be insane. ..

 

[Chelles]

@Street Spirit we must stay hopeful of we lose hope we lose it all!

 

[Street Spirit]

@Street Spirit we must stay hopeful of we lose hope we lose it all!

Too true @Chelles

((thank you))

 

[mermaid]

@Street Spirit - I have the same myoclonus as you. I developed it 3 years ago. I've taken a lot of neurogical pills and until now no pill has resolved my problem, only valium brings a little bit of relief. Have you ever wondered if your ear myoclonus is somehow related to atypical trigeminal neuralgia? I've found something like this: http://www.dailystrength.org/c/Trigeminal_Neuralgia/forum/12661724-fluttering-ear. Do you feel burning pain around your ear? I do and not only around the ear but on my cheek and temple too. It's a neuropathic kind of pain. Is your eardrum tensed? I feel constant tension of my eardrum. I was prescribed Gabapentin once (it's a medicament especially for neuropathy, not for neuralgia, although it can help with neuralgia too) and it didn't help me at all. Maybe should my neurologist prescribe me carbamazepine - the medicament for treating trigeminal neuralgia...??? I have tmj too and I'm wearing occlusal splints but without any positive effect .

 

[Street Spirit]

Hi @mermaid sorry to hear of your pain I was diagnosed with ATN so I find that interesting. .to me it's all just TMJ symptoms overlapping.

Before my H and T began I couldn't wear my
sunglasses anymore due to the terrible pain behind my ear. Then H and T started.

I have tried alot as well. Tegretol was too strong for me. Clonazepam worked the best and is used in the treatment of facial neuralgia (TN)

Yes my ears burn and jaw area as well. It's hard to say what is what anymore..but truly that massage from my bf seemed to help the myoclonus..but it could be coincidence. .

Hope you find some relief soon! I have yet to try a splint. Are you doing the 24/7 orthotic with adjustments? (K7 tensing) ?? I can't afford it.

 

[Mad maggot]

Hmmm..I wonder if this is stemming from my neck. It seem to start after eating. I bet it's TMJ..it's truly the only logical explanation..and when I say " TMJ" believe me, I am not just referring to jaw joints..I have constant pain points all over my head and neck, both confirmed by my Neuromuscular Dentist and Neurologist. One said fibro and referred me and the other chronic atypical migraine that stems from post concussion syndrome..I even havethe stomach issues that go with it..so alot going on..just don't know why my ears must get so involved. It's pissing me off!..must be nerve impingement or something. .

Sounds an awful lot like myofacial pain syndrome.
I could talk to you forever about this kind of pain. Fell from a two story building landing on my head at six years old and wear a permanent splint in my mouth to hold my jaw in the right position. At night when I lay down my face goes into spasm all over - not painful, just feels like popcorn popping all over my face. My spine is rather a mangle. So often I wake with my neck in spasm twisting my head to the right and bending it back over my shoulders until I realise it's happening and release the muscles. When I get a migraine my face and teeth hurt like hang! Even my nose. Thankfully I don't get it so often.
But what you describe sounds like myofacial pain or fibromyalgia which is more widespread. I'm not sure what fibro is. My doc said it was just a waste bin diagnosis to get rid of people they can't figure out what's wrong with so just give them a label but no real help. But I've met people diagnosed with it who have meds that they say helps.

 

[StephAtkings]

Hi There, I am new to this form. The reason i joined is because i started to get thumping in my ear ! It started in my left ear and now its happening in my right. I thought i was going crazy as nobody i know has ever heard of this. Does anyone have any tips on how to deal with this ?