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Old 02-03-2008, 07:42 PM   #1
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Needling,burning,cramping pain in neck & throat under ear worse when move arm

Please help me...I think this could be neuropathic/neurogenic. How do I get a diagnosis?

Hi I've had this pain for years on the right side just under R ear from back of base of skull, along to front throat under jaw. I was on clonazepam and using an occlusal splint for upper teeth to counteract alot of spasticity in face, throat (real scarry stuff) to keep airway open.

There is needling & burning pain there and I've always ignored it and assumed it was due to my TMJ. I noticed lifting shopping bags or just using right arm referred pain to this area and a THere is also alot of scarring red at the back of my right soft palate and I have trouble swallowing on that side....Now its starting on the left side.

 
Old 02-04-2008, 05:16 PM   #2
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Sounds like you may have a pinched nerve somewhere which cause the burning sensation. This could also be the case when you are lifting as well. I was wondering do you suffer any kind of muscle weakness when trying to lifting up something like a bag of groceries?
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Old 02-04-2008, 08:49 PM   #3
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Thanks for your response rayefaye. Yes in answer to your question. I have been on clonazepam for 13years and the entire right side of my body became contracted and weak. Moving my right arm and lifting groceries always caused referred pain to this area and to the jaw bone in the face. ALways had probs with R jaw and trigem area swelling.

I just endured. THere is a lot of spasticity in my throat, oral cavity and facial muscles. Audible clicking to others. I've noticed some deep red scarring at back of soft palate on R side and I get the burning and needling there also...so I figured maybe under the R ear is scarred also.

Now its happening on the left side (visible scarring soft palate) and burning, needling spasming pain plus under left ear same section.

I got to the stage where I was tripping and dropping things, waking up gasping for air and having choking problems which I now realize are difficulty swallowing on R side. I have changed my diet and take small bites.

I am so worried this could be motor neuron disease of sorts.

 
Old 02-05-2008, 07:30 AM   #4
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Hi vital, you could be suffering from what is called Spasmodic dysphonia/Laryngeal dsytonia. This type of dystonia which is muscle spasms and it effects the larynx. Do you have any problems with you voice, like your sound is broken or reduced to whispering? There is also another type of dystonia known as Oromandibular dystonia which affects the muscles of the jaws and tongue. It causes distortions of the mouth and tongue. I suffer from Cervical dystonia which is severe and uncontrolabe muscles spasms of the neck. I can't lift nothing heavy or reach over my head and do anything because it will bring on these severe muscle spasms. Check out and see what you can find on these two types of dystonia and see if you have any the systoms associated with them. Also, have you been checked out by a neurologist if not, then maybe you should see one. I also think that the burning sensation you're having is nerve related as well. I hope you can find some answers soon and someone who can help you.
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Old 02-05-2008, 07:40 PM   #5
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Quote:
Do you have any problems with you voice, like your sound is broken or reduced to whispering?
Yes this happens. I had been on clonazepam for 13 years & all the time spasms neck, throat, face, jaw R side... and did avery slow taper c/o to Valium and down but couldn't come off because of the severity of the spasms & burning in my throat/neck/face/jaws & others

. But the sides of and neck particularly strong. Also intense"being burnt alive" type pain in osophagus and lower sphincter. The last 4 months or so I have been on 10 mg Valium, 40mg Nexium, 30mg Remeron and 75mg Lyrica. I have never been on so many meds in my life and am not at all certain Im on the meds to address this problem. How is it usually treated? Do you know? Thanks so much for taking the time to reply.

Quote:
There is also another type of dystonia known as Oromandibular dystonia which affects the muscles of the jaws and tongue.It causes distortions of the mouth and tongue.
Yes, I have oro-mandibular problems and the muscles of my jaws esp right but left going also are affected. Im concerned because it seems to be progressive...like a neuropathy. I can see the spasming in my soft palate and a scarred area there (getting larger over the years). Now its started on left side ofpalate. I have been feeling needling and burning in the sides at the back of my tongue (both sides). Im concerned that this is neuropathic and progressive and may lead to ALS.


Quote:
I suffer from Cervical dystonia which is severe and uncontrolabe muscles spasms of the neck. I can't lift nothing heavy or reach over my head and do anything because it will bring on these severe muscle spasms.
What do you take for this? How is it treated?

Check out and see what you can find on these two types of dystonia and see if you have any the systoms associated with them. Also, have you been checked out by a neurologist if not, then maybe you should see one. I also think that the burning sensation you're having is nerve related as well. I hope you can find some answers soon and someone who can help you.[/QUOTE]

 
Old 02-06-2008, 06:07 PM   #6
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Hi vital, I take Soma 350 mg 4 x a day for the spasms in my neck. For the nerve damage, I take Neurotin 3600 mg a day which is like 600 mg every 4 hrs and this keeps the burning and extreme pain under control. I also take Norco 10/325 mg 4 x a day for pain and Celebrex for arthritis pain. I've also had Botox treatments but they didn't help and are expensive also you have to have them every 3 months. Some suggest medications that are used to treat Parkinsons disease. Also suggest medications like Keppra and beta-blockers including "off -label' uses for some blood pressure medications. There is also a medication called Sinemet that is a L-dopa that is used to treat it. I see you're on Lyrica 75 mg a day maybe you need an increase in this to help with the burning sensation. I believe the highest dosage is like 300 mg a day and maybe a different type of muscle relaxer. Two go ones are Soma and Baclofen maybe you could try one of these to help you with the spasms. I hope this helps answers some of your questions.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 02-06-2008, 08:56 PM   #7
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Geez you're on a lot of stuff. You have been so very helpful, thankyou for taking the time to respond. I feel so lost since Prior to these meds I was just on clonazepam but burning all the time... then read somewhere that it could be a w/d Sx of the benzodiazepines. THe entire R side of my body was contracted and weak and spasming in neck/throat/face full throttle, trouble breathing and choking on food on Clonazepam.......... but as I c/o to valium 3 weeks more burning, choking and jaw cramp episodes burning in head, face throat etc upper R quadrant of body. Have you heard of nerve pain like this? Originally my problem was just in the face, jaw and head R side only.

How do you know if the burning is from withdrawal from the med or from nerve damage or both?

At the end around 5 mg Valium all hell broke lose. My osephagus felt like I was being burnt alive from the inside out the lower sphincter esp. like a dagger all the way to the back b/n shoulder blade. ..all the way up into throat and back of nose etc. Constant spasming of osephagus..couldn't lean back in a chair to sit as the touch would "burn" and trigger more spasms in osophagus, throat. It seemed as if peristalsis itself triggered spasms..I was so hypersensitized and the right side of my face froze and went numb as does the neck area sometimes burns sometimes freezes. IS THIS REFLEX SYMPATHETIC DYSTROPHY? I get it happening in my R hand and R foot which can swell & burn or go frozen.
I notice you say you have RSD, that is why I ask. Have you heard of anyone describing osphageal pain like this "being burnt alive" and in the throat as well?
Do you get the wheal & flare reaction? I think it means your body is producing tons of anti-histamine. I would get it immediately for years and years on both sides of my body (after drawing two circles with your fingernail above breasts). THey would turn red immediately whilst I was on the clonzepam. And I always felt as if my body was in "inflammatory &histaminic & Acidic mode". Is it possible that i became allergic to that drug?

Quote:
I see you're on Lyrica 75 mg a day maybe you need an increase in this to help with the burning sensation. I believe the highest dosage is like 300 mg a day and maybe a different type of muscle relaxer. Two go ones are Soma and Baclofen maybe you could try one of these to help you with the spasms. I hope this helps answers some of your questions
Yeah, the Lyrica hit the same spots as the clonzepam used to. I seem to feel the same Sx also, my lips feel swollen, inner cheeks feel swollen with tip of tongue. I am so concerned that I have develped some sort of allergic reaction the meds. Since I was in Tolerance on the clonzepam for a long time and may be toxic from it. Im still waiting to go to a pain clinic.

Do you get drastic temperature changes like freezing R side of face/numb to burning including neck/throat.. Is this all part of the neuropathy scene?
many thanks for your support, advice and time.

 
Old 02-07-2008, 07:08 AM   #8
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

I haven't had it in my face and neck. I got the burning feelings in my feet at first then it began in my hands and neck area. The spasms began in my neck and shoulder. I also get the burning sensation in my arms. I've never had the wheal and flare test done in fact I've never heard of it until you mentioned it. I did look it up to see what it was about. You do sound like you're having some type of allergic reaction to something when you mention the lip swelling. You also have alot of symptoms that are compariable to RSD. There is a Reflex Sympathetic Board which if you look at the top it gives you the symptoms of RSD. Have you been to a doctor recently and had any kind of allergy test run? I think you need to see a doctor or if the one you're seeing now isn't a big help please find another one. Also maybe you should go to the ER and have yourself checked out to make sure you're not having some type of allergic reaction to something. I still believe that you're suffering from RSD and dystonia but also get the other checked out as well. Also try posting on the RSD board and see if someone else has some better suggestions than what I have suggested. I hope you can get help soon because you need to be seen as soon as possible.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 02-07-2008, 10:24 PM   #9
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Quote:
I've never had the wheal and flare test done in fact I've never heard of it until you mentioned it.
The doc has done it on me in the past, so he's been aware of it for a very long time. You can do it to yourself. Just use your fingernail to draw two circles 6 inches below your breast bones just above your breasts, and see how long it takes for the circles to turn red, sometimes they fill in as red as well. I think it means one is very sensitized.
Quote:
I did look it up to see what it was about. You do sound like you're having some type of allergic reaction to something when you mention the lip swelling.
Yeah raye, this is my concern. Im waiting to go to a pain clinic, which may take months. I only take panadols because Im concerned that my body may react in weird ways to medicines. I only eat bland foods.

Quote:
You also have alot of symptoms that are compariable to RSD. There is a Reflex Sympathetic Board which if you look at the top it gives you the symptoms of RSD.
I will do this straight away. But my picture seems to be so complicated raye that im losing hope.
Quote:
Have you been to a doctor recently and had any kind of allergy test run? I think you need to see a doctor or if the one you're seeing now isn't a big help please find another one.
Ive been to a new doctor and have a referral to an ENT for the throat issues but will need to wait til mid March and my throat feels so raw and sore and I react badly to sprays they use for endoscopy...so Im not looking forward to it.

Quote:
Also maybe you should go to the ER and have yourself checked out to make sure you're not having some type of allergic reaction to something.
I'm in Australia.I think one can become Tolerant to the medication one is one, one can also experience interdose withdrawal, as cramps, burning etc,needling and worsening of one's condition. I think perhaps one can go beyond Tolerance and become intolerant to a medicine.

I
Quote:
still believe that you're suffering from RSD and dystonia but also get the other checked out as well.
I've been told I have pain sensitization, which is a polite way of saying you have a damaged central nervous system. What do you think?
Quote:
Also try posting on the RSD board and see if someone else has some better suggestions than what I have suggested.
Will do, thanks raye

Quote:
I hope you can get help soon because you need to be seen as soon as possible
.
I agree. I was seen by a pain specialist who didn't seem to interested in even looking at diagrams simple ones that I'd drawn of my cramping, burning and swelling pain. He just handed it back to me and said to show the psychiatrist. He also stated that I wasn't there to expect anything from him but that he was there to expect things from me. (That presumably to shut me up). I tried to talk to my GP about the swallowing issues & throat spasticity for a specialist and he reprimands me telling me to go to the pain specialist. The pain specialist tells me not to expect anything from him. Nice set up they have going, eh? I don't know how common this is for patients with central type pain syndromes to get told to see a psychiatrist..but this is not a path I would like to take.

 
Old 02-08-2008, 09:53 AM   #10
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Wow, I thought we had some uncaring doctors in the states but this is utterly terrible. I was just researching clonazepam and the side effects of this drug. One of the severe allergic reactions to clonazepam was difficulty breathing; closing of the throat; swelling of the lips, face or tongue and hives. I strongly urge you to seek some kind of immediate hospital care because these doesn't sound good. Also since you've been on this drug so long they may have to slowly wean you off of it. Please try to find some immediate help.
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Arthritis

 
Old 02-10-2008, 01:50 AM   #11
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Thanks Raye. I don't have hives but my skin does turn red like I described in earlier posts. THe swelling of the lips is not "visible" it is just something I sense and same inside the cheeks. When I was on the rivotril I did have trouble with breathing and apnea at night, also spasticity in throat and face but because of the tmj probs I just would put the splint in my mouth to keep itopen...scared of choking., My doc didn't say anything about it. I have come off the rivotril but am now on Valium ..I couldn't make it all the way off because of the severity and widespread nature of the Sx unveiled. I suppose what I need to know from knowledgeable members of the forums (& I hae posted in other areas of this board) if this wheal & flare reaction to scratch a circle on area I spoke of. Is this wheal & flare response (which you can try on yourself) is what people with RSD or CRPS or neuropathy usually have?

Or is it an immune reaction that one has develped to a medication one has taken for a very long period of time and become CHRONIC? Perhaps even become an immune reaction to one's own nervous system? A Hypersensized response or Central sensitization?? Do you know anywhere/or anyone on the boards here who could input in this area? Is it normal for people with Central pain (CNS) to have this wheal & flare reaction?

 
Old 08-27-2008, 02:05 AM   #12
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Re: Needling,burning,cramping pain in neck & throat under ear worse when move arm

Just an update;

Seen an ENT specialist and a neurologist.
I have palatal, pharyngeal and laryngeal myoclonus diagnosed via nasoendoscopy and also seen on videofluoroscopy...to affect the oro-pharangeal phase of swallowing ...hence the mild dysphagia...which I know is progressive.
BURNING pain is affected by different meds and withdrawal from meds (interdose w/d).

Thanks for your interest rayefay..Do you know of anyone on the boards with palatal, pharyngeal and laryngeal myoclonus??

 
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