Chronic Pain Disorder...Muscle Spasms 24/7 in head and neck

I posted the full story under 'chronic illnesses' but figured that here there may be more input and personal accounts.

So I don't rewrite the entire thing, I've had severe muscle spasms in my head and neck causing vertigo and severe disorientation since 2006. No doctor has really cared enough to figure out the issue and I've had to sell all my things to pay for medical expenses.

I am definitely disabled and seeking disability but my pain doctor, who has Rx'ed me morphine patches thinks I can work. My health is unreliable and I have not been able to hold down a job since 2006 so I do freelance web design and perform as a web cam girl.

I had dental work done and a month afterwards the dizziness started and then the pain. The muscles in spasm are:

• Sternocleidomastoid -starts under jaw and goes down neck to collarbone
• masseter -the 'chewing' muscle.
• Temporalis -on side of skull above ear
• Pterygoid medialus -inside the mouth near ear
• Pterygoid lateralus -same spot but closer to skin's surface
• Tensor veli palatini -this muscle is actually controlled by the P.M. and it's function is to open and close the Eustachian Tube located in the inner ear. If the E. tube isn't working properly it can cause vertigo.

I've even had medical botox injected into most of these muscles to try and paralyze them...nothing.

I can barely move my head and get dizzy in populated places. I've become a hermit because most people don't understand the disorder and I've received a lot of judgment because of it.

The issue has been associated with TMJ. At times my jaw will 'pop' or 'crack' when I open it but no doctor has been able to remedy this and it seems every doctor I go to just refers me to someone else. It's a medical mystery and I'm in constant pain missing out on living my life.

My only hope is finding a doctor that cares and will work with me. There are times where I've felt that ending my life would end the pain because it gets so severe and disorienting but I could never do that to my husband. I want to have a family and children and enjoy my life and it's that thought, alone, that keeps me going.

I've tried about everything under the sun. The best relief was valium back when I didn't have a tolerance and physical therapy.

Can you just kill a muscle? I thought botox would weaken it but I got nothing from it the last time. I am desperate.

I'm afraid if they killed the muscle, you wouldn't be able to open & close your mouth.

I know the frustration & desperation tho. I asked the docs if they could "kill" my sciatic nerve as I've had sciatica for over 25 years -- but they said if they did, I wouldn't be able to walk anymore. I'm almost thinking it would be worth it -- but no decent doctor would do it.

Have you tried a teaching hospital?? Most of them have excellent doctors who know the latest on treatments & "cures." If you haven't, why not try one of them? Someone at a teaching hospital is bound to have some sort of answer for you! Or at least be able to better control your pain!

I wish you the very best of luck! God bless and please take care! Hugs, Lee

ya know, i honestly could live without talking. most of my interaction is through typing anyways. i'd prefer that over pain any day.

Hi digdigOphelia,

I have similar pain as well, but in my lower jaw, (radiating like yours) which has been getting progressively worse. I was recently referred to an ENT.

Have you seen an ENT or an oral surgeon yet?

I hope your pain lessens...

SeekingZen

I just had 3 weeks of intense pain... I can't imagine what it would be like to feel that for the length of time you have. I'm not a doctor but it sounds more like a vascular or nerve problem than muscles. I'm sorry if you've answered this and I missed it but...have you seen a neurologist?

Same pain it was my back through took the dr's forever to dignos me. Upper back had back sur..

Have you tried a mouth guard at night? That helped my tmj (tmd) a lot. Just a tiny NTN device my dentist made stopped me from clenching at night during sleep. Something to def look into!

I am sorry you are in so much pain, sounds like an ordeal. I am in major pain also so I empathize. Does not sound like you would be able to work with something like this. Maybe an oral surgeon can advise you? Feel better.

Dear, like you, I live in pain. Have you had much neck pain associated w your Tmj? I ask this because I have cervical degenerative disc disease and chronic and severe muscle spasms in my shoulders, neck and tension in my jaw that causes Tmj. I wonder if our pain is referred pain from your neck or skull base. Just a thought that may help in your medical venture. Like you, it took me multiple years to receive a diagnosis. Prayers to you on your journey. Pain can help to build a strong character, but learning to live with it in the meantime is hard. Hang in there, you're a special chosen one who can fight in the pain battle.

I have complex regional pain syndrome and dystonia (that's the short version , and a few moths ago was prescribed Baclofen, a muscle relaxant prescribed mostly to people with ms.

It has helped some with the constant muscle spasms and tremors, and while it hasn't eliminated them, I do see an improvement.

I have dystonia in my entire left side. My leg bows and my ankle is permanently rolled outward, as well as my arm, neck, face and tongue are constantly going between painful and rigid spasms and uncontrollable tremors.

The Baclofen has reduced the spasms and tremors, as well as the intensity of the ones I do experience.

I'm sure you have tried various muscle relaxants, but thought I'd throw in my two cents with respect to my experience with Baclofen. My specialist and I are still fiddling with the dosage, I currently take 15mg three times a day.

I feel for you and understand how hard it is to battle severe spasms and severe pain. I am unable to work as well, and had to leave my job as a 911 operator. For me it's been over 4 years, and some days I wonder how I'm going to keep going, when I'm only in my early 30s, and have a young family. Other days I don't wonder so much.

Best of luck to you! I will keep an eye out for your posts and follow your progress!

I had this SAME AREAS!!!I know the pain!I had started Valium which is a muscle relaxer and have not had a muscle spasms since?I have a few jaw,neurologist,psychiatrist working on this....the physical therapy thing did not do anything to make it better.Acupuncture has helped with my speech and opening jaw.I can relate to this! It is horrible and you wish you could not talk but that makes you really depressed!Trust me.If you have any questions I will try to help you out.I been dealing with this for a 2 years now!HORRIBLE PAIN!I got relief 6months ago