Dystonia Support Group

Dystonia (literally, "abnormal muscle tone") is a generic term used to describe a neurological movement disorder involving involuntary, sustained muscle contractions. Dystonia may affect muscles throughout the body, in certain parts of the body, or may be confined to particular muscles or muscle groups.

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EAR Pain with Cervical Dystonia??

I've been scanned, x-rayed, tested for everything under the sun, shuffled from doc to specialist --- ahhh.
cervical dystonia makes some sense, sort of??? more so than anything else.
i'm in a pain clinic. currently on methadone with percocet for breakthu pain. previously tried many other including fentayl patch. gabapentin helped with some of my pain but caused terribleside effects.
My most excrutiating pain is in my neck/head/ears/throat. It's constant. This pain has been going on for about a year. Injury to that area has been ruled out by mri's neck and head.
methadone provides best relief but i'm still in agony.

Pain inside front of neck. 24 hrs day & very severe!!!
gripping, cut my neck open get this pain out, pulling, knotted, hard cramping, muscle spasm. stiff sometimes throat/thryoid/and or tonsil area feels very sore raw swollen painful.
Pain in muscles back and side of neck and shoulder/upper back. I only have this very sporadically. this was first pain preceeded front o neck ear pain by at least a year. i get this infrequently, every 6-8 weeks. It often causes intense nausea and vomitting.
Pain in ears - ear canal and inner ear. 25 hrs a day very severe. i don't think ear pain is associated with cervical dystonia. This too is constant. using my finger i put pressure on my ear to help relieve pain/pressure.The location of this pain baffles doctors.
I also experience significant pain about 30% of day in
Upper chest pain
and i've had this pain and pain elsewhere for last 2 years.

Like cervical dystonia, i tilt my head constantly!!! lightly touch neck or hold neck, touch/hold lower chin, hold back of neck. i can't keep my head straight. Pain disorders (fibro, CRPS) lyme etc have been ruled out.
before pain started in front of neck/ears/throat, i developed intermittent cough, sore throat, ear ache. About 2 mo later it turned into horrendous PAIN and muscle spasms. It's unbearable.
i really want to try botox for muscle spasms and pain in neck/ears/throat/ but with no understanding of origin of pain he's unwilling. aahhh.
it resembles cervical dystonia in many ways but in others no.

Does anyone experience severe ear pain. Mine is non-stop.
I'm desperate to get to bottom of this but i must immediately reduce pain in neck/throat/ears/head. i just want to try botox once, who knows maybe i could reduce/eliminate opiods.
thanks for listening.
could this be cervical dystonia?



You poor girl, I will pray for you!

I have had these exact same symptoms for over a year now...probably close to 2 years. The only difference between your story and mine is that NO ONE will help me!!! And when I say no one, I truely mean no one! I take nothing for my pain because no one knows what is wrong with me, so they just think I am faking! I am only 24 so they think I am seeking pain meds just to get high. I cant even get a prescription for percocet anymore....

I have the pain in my ear and neck, just like you. Mine is a constant burning/stinging pain. It really is like the worst pain I have had and I gave birth to a child without any pain meds! Kinda sad knowing that the doctors arent doing their jobs! There is no reason why I (or anyone) should have to live in this pain EVERYDAY!!!

I feel your pain....

I have cervical dystonia and was diagnosed by a Neurologist. I get botox injections every 8 wks. I don't know what I would do without them. I understand the pain you are talking about and am so sorry you are going through that. It is Hell! I would look for a Neurologist that treats patients with dystonia so you can be properly diagnosed. I wish you the best. Hang in there.

I just found out today that I might have cervical dystonia. I can say that when my head is tilting off to one side, my bite is off - which can cause TMJ symptoms.

Mine started with humming in my ear. Pain in my neck and shoulders and now it has radiated down my right arm. My right top of my thigh, right calf and ribcage as well are in muscle spasms most of the time. Knots, achiness, jerking motion, twitching, unbelievable pain. Sometimes the humming in my ear is so annoying I have to have music and white noise on to drown it out. I am so sorry you feel so badly. I have been diagnosed with fibromyalgia and cervical dystonia. It is not just in my cervical spine, though, it's my whole right side. Now I think it is moving to my left side. What is going on??? What can we do to stop the pain???

Im so sorry your going through this. I went through all this a few years ago. I went into remission. But then it come back. Im praying for you. This so difficult to deal with. Im hiding my condition at the moment cause im also suffering with depression. Which im sure life situations set it of again. Im hopeing looking after myself and getting rid the the main stress will send me back into remmision. Take care of yourself. and i hope you have good people around you supporting you ((hugs))

I know that opiods in large quantities can cause damage to the tiny little hair cells in your ears. That could potentially cause pain. But Also, in your ears there are tiny little muscles that control the contract of the little bones which are attached to your eardrum. It sounds like a longshot, but these could be in spasm. I take any substance I can to increase GABA, to increase the rate inhibitory neurons will fire. Lorazepram may help, but I don't know what medications you are on. I am not a doctor, so this is just friendly person to person advice.

Hi Sienna12,

I have multi-systematical dystonia (sometimes called Generalized Dystonia). I also have "dysphonia" which is in the throat. I have a sore throat, intense pain, cough, ear pain and a squeaky voice, or no voice at all. I get botox injections into the neck throat muscles of my front neck about every 6 months, I don't know what I would do without them, I just had my series of shots today and once again have a voice.

I also have dystonia in the back of my neck mostly on right side, my head throws itself back the pain in unrelenting, going to have botox in back & side of neck soon. It effects my shoulders, head, jaw and ears.

My dystonia has spread to my legs and hands & feet, but I don't seem to have any torso tremors. My body is starting to twist, my neck and feet are twisting, which causes pain.

My dystonia came on with a vengence after a car accident with injuries to upper chest area and severe whiplash in 2008. Prior to that I had very, very minor symptoms but was never diagnosed.

My first suggestion would be to find a qualified neorologist that deals with dystonia. There are so many types of dystonia, only a qualified doctor could help you because it can be mis-diagnosed as something else..

I was diagnosed quite easily, but some of my symptoms are not usual for dystonia either, doesn't mean I don't have dystonia its just that we all are different and dystonia is all over the place, its a trickly condition.

I pray you can find a neorologist of which his specialty is dystonia so your intense pain and suffering will be brought under control. I would suggest being very pro-active, get online and look up dystonia and the various types there are - Mayo Clinic website or there are dystonia sites also.

Gentle hugs & blessings to you. .

Hi All,
I'm new to the group. Suffered for 3yrs before receiving my dx of CD. Also affects the muscles in my throat so have great difficulty with swallowing......can only "nibble" on food.
I too also suffer from excruciating pain in ear,palate,down inside of throat. Finally determined that I also have GlossoPharyngeal Neuralgia brought on by the muscle spasms.....seems the spasm of the muscles below jaw area are inflaming that nerve. Perhaps this is also the cause of your intense pain in ear area? My nerve pain is searing, burning, stabbing and feels like I am being burned & stretched on the inside.
I have just now found a neuro who has diagnosed me at long last. Had been to endless "specialists" who said it was everything from GERD (reflux), stress, and "bad posture" causing spasming. One specialist told me to not even bother seeing any other doc or doing any more tests as it would just be a waste of their time and my money. Very sad in this day of huge medical science that people must suffer for so long before a doc is willing to think outside the box.
Neuro wants to start botox......I'm pretty scared with all the possible side effects I've read. Can anyone share what their experience has been with this?
So nice to find this group......this disease can be so isolating......

Reply to #9, and to you. Botox has been a blessing and I wouldn't be afraid of it. I don't like the one they are giving me now, but regular Botox helped tremendously along with my medications to help with my tremor. Just find a neurologist that works with Parkinson's and he/she will be able to help you. Best of luck to you all. Pepper
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