CAROTIDYNIA

hi everyone.  I am a 34 year old woman who was diagnosed with carotidynia on Nov. 22 of this year.  I had reoccurring middle ear infections that never cured until i was prescribed a stronger antibiotic.  my doctor was puzzled as to why my ear wasn't getting any better so he scheduled me an appointment with an ent doctor.  i felt severe pain from my left ear, left side of my neck, and throat and got tired of taking so many painkillers and going to the doctor every week.  my pain also came in the evening around lunch time and especially when dust was present.  the pain is unbearable when it's cold and i can't stand for air to get near my ear at all.  it hurts so badly. heat really does work and so does 800 motrins and hydrocodone 7.5 painkillers.  im fine in the morning unless it's windy out or cold.  i just cover my ear and i'll be fine until dust is present.  if i can be of any assistance to any of you please let me know.  also my doctor prescribed me steroids for 8 days and to take advils and aleves for one more week and follow up with him in 6 weeks.

I am a 66-year-old woman and it sounds as though carotidynia was a problem I had years ago.  Back in 1981 I started having recurrent middle ear infections, then a bout of tonsillitis.  Each time antibiotics cured it and it was fine.  Then I changed to another ENT specialist and he felt the pain and infection was from a blocked salivary gland that became infected on occasion.  Once again antibiotics did the trick and it would clear up.  This doctor retired and from then on I got no treatment for the pain when it would come.  Sometimes it would last only a few days - once it went on for 3 months straight, every single day.  My family doctor sent me to a neurologist who thought it was some kind of neuralgia and prescribed Neurontin, which did no good at all.  I used to have pain in my ear, cheek, nose,forehead, eye, jaw and throat on the left side.  I used to find it would ease up first thing in the morning, but would get worse as the day went on.  I was always able to function and continue working, but I certainly felt miserable a lot of the time.  At least there were breaks in the pain!  Fortunately in the past 8 years or so, it has improved greatly and I only get it once in a while and usually only for a day or so at the most.

The worst thing was when I got no treatment for it and it would just go on and on and on.  And after the second ENT specialist, every doctor said there was nothing wrong with my ear or my salivary gland (even when I felt it was swollen). 

I have rheumatoid arthritis. I just found out I have carotidynia also. I think this must be autoimmune related!

I'm a nurse who primarily works with patients who have conditions of the neck and spine. You're symptoms are classic neck and you have what sounds like nerve impingement. You are playing with something that can be serious. I you haven't had neck surgery..... You may want to consider. Once the nerve damage is done, and the longer you wait, the more debilitated you will become and the less likely you'll regain use. Quit screwing around and see an orthopedic surgeon who specializes in spine.

I realize you post is 4 years old but did you get any relief from this. THis sounds like what I have. Have seen several Dr.s and they just put me on antiinflammatory and gabapentin, but I still have it and have had it for a whole year now. One Dr. said it was stress related as well, and at times mine will be ok and then comes back. Have you found any foods that might trigger it or make it better?

Very good to know- this is useful information. Thank you!

Hi I am a 48 yr old female and have suffered from carotidynia for at least 12 years. I was diagnosed in conjuction with my migraine headaches which I had everyday of my life for at least 5 years. Believe me we tried everything, steroids, antidepressants, pain medication NSAIDS and narcotics. I was hospitalized twice to wean my off the pain meds.. I was given a drug called DHE. This was given intravenously twice a day. I also took migraine medication and a bloodpressure pill, although I never than high blood pressure. It was a hard battle to over come the migraines but finally at 40 years of age I was free of migraines and the carotid pain was subsiding. However it is always there, the carotid pain. Some days I barely notice it at all and other days it will throb right at the carotid bulb and radiate up neck to ear. I have always had right sided pain. I suggest not to use a lot of any pain medication on a regular basis. This seems to feed the pain, causing rebound pain, pain that is very hard to break. My pain, throbbing always increase when I am stressed out. However I have not had a migraine in years, which is such a blessing from daily carotid pain and migraines. I just suffer through the carotid pain and when my stress subsides so does some of the pain. Hope this was helpful.

Hi IslandChip,
I'm about 6 years late .. but in similar pain nonetheless! I can not touch the area by the Rt. artery with my fingertip, or I will let out a hollar .. it's so painful ....! It has (on occasion) radiated into my chin, right cheek, jaw, temple, ear, and behind the ear up to my skull bone ..... All the doctors have prescribed, so far, is Advil or Motrin, 2 tablets, 3 times per day. They took CAT Scan with dye, later MRA without and with dye. Bloodwork .. etc.
It began with minor pain .. and intensified every day .. seemed to me to DOUBLE in pain each day ... until I was in real excruciating pain requiring medical intervention. I tried to stop the Advil, but it comes back again ... It has lasted from beginning of February 2013 to March 21st so far ... hopefully, it will stop soon ... I am a 74 man, had NO VIRUS, and no other illness prior to this onset.......so you've got me on WHY it has happened or how to make it go away!

I believe that! The shingles virus is also linked to herpes virus and the trigeminal nerve ( trigeminal neuralgia) would cause pain in the same area as carotidynia.

I was dx with carotidynia about 1 yr ago....after severe URI and dysphonia.....steroids made me very ill, rather than helped. I am now on a BP med, after 2 classes of them tried, finally Cozaar is the cure. Wow..I feel well!

This was finally introduced to me after months of scans, scopes, thyroid u/s and no answers. Initial symptom was tenderness at the carotid with no explanation. Later experienced one primary incident of extreme head pain and pressure, inner right ear radiating pain to the jaw, discomfort "stuck" feeling down the right side of the throat. I was treated at urgent care with augmentin for sinus infection. After that didn't work, symptoms remained constant, ENT tried steroid and another antibiotic. Again, with no results. Front CT showed no sinusitis. Got dental x-ray to see if it was a tooth issue, no visible issue. I had a bout of the flu followed by what appeared to be tonsillits, strep was negative. (this might not be related, but if it was a recurring viral infection, that could have been a trigger that was also unresponsive to antib). General pract. gave me another round of antib. Azythromicin, which also didn't relieve the symptoms. Finally got in with a new ENT. Case studies show a link of the migraine triggering vascular response in the carotid, producing these radiating symptoms similar to sinusitis. Treatment beginning is for migraine with tricyclic antidepressant.

I am new to this forum but I have been in extreme pain since a dental procedure in July.  Its now Feb.  I have been to ENTs Infectious disease doctors and numerous doctors.  No one can figure out what is wrong.  My pain radiates on my entire left side of my body.  Head down to my hip. When I say head hurts I literally mean my SCALP on the left side hurts.    I have been prescribled Antisieesure meds, cortisone pills, narcotics, antiviral medication and numerous antibotics for dental procedures. I have had a gammet of MRIs cat scans and sialograms. I just recovered from surgery to flush out any stones or inflamation in my cheek.  I have not had any relief.  I am going back post op to my ENT and going to ask for a MRI of my neck.  Is there any specific diagnostic test that I should be looking into to rule out this Carotidynia?  Any help would be benificial.  

OMG You and I are alike.....I get severe nasal stuffiness, coughing, fluid buildup, hoarse voice, neck pain. Am controlled by Cozaar for BP, Prednisone on flare ups, inhaler, antibiotics.

I was diagnosed in my 20s (mid 90s) by my Dr who had the same thing and had sought help. He assured me that it was nothing and with some advil it went away. I've had a couple of reoccurrences, and of course I'm having a slight one now, 20 years later. Doesn't help when you're a hypochondriac too :(. Took a muscle relaxer last night and already feel better. Stress seems like a good cause.

Been struggling with severe ear pain upon waking for at least 15 years, also migraines, and it sounds like carotidynia could be my problem. My desire is to find some method of prevention to take or do before I go to bed at night. I dread going to sleep knowing I will probably wake up with this pain. How many mg is extra-strength Ibuprofen? It probably wouldn't be good for me to take it every night??