Greetings, I have been looking at this list for the last 4 months and have found it to be very helpfull and would like to thank everyone for their inputs. My problem is just about the same as all of you and I have had all the same symptoms as you for the last 4 months. I have been to the all the same specialists as you, but the furstrating part is that I still don't know what to do with this carotidynia?? I am going to my dentist on Tuesday and back to the orthopedic doc on Thursday. Could it be my very old (50 yrs) fillings in my teeth on the upper right?? I have a sore throat most of the time, and acid reflux symptoms. Can't take most medications because they irritate my acid reflux. Read an interesting article on Sternocleidomastoid that seems to show the same symptoms as Carotidynia. If you have any input PLEASE let me know.

I had my first symptoms in December of 07. I also have been diagnosed with hypothyroidism. At first I thought the pain was my thyroid but not so. I just took my first 20 day dose of prednisone and now the pain is coming back. I'm lost as to what will work. Who is this doctor in Paris that is a specilaist?
Lori

I have just been diagnosed with carotidynia. Thank goodness I have a very through GP who did tests and found nothing so he sent me to the best ear, nose and throat doctor in our area. He felt my neck and diagnosed me right away. I am to start Advil 3x a day for 3 weeks then come off to see if the pain has gone away. Then if it hasnt I am to go back to him and he will put me on sterioids. I have been on them on and off all my life due to asthma so they are nothing new to me. My doctor tells me I will have flair ups all my life and when I start the feel the pain I need to go on Advil immediately. He is telling me it is auto-immune and there is no known cause for it. I am just trying to get feedback and see if all he is telling me sounds right to you all. I am going to get on and do more research. Thanks for allowing me to post.

I am 59 year old female, diagnosed with carotidynia. Have been to many docs and had many tests. The pain is severe and relentless. It's especially bad, of course, in the ear, but it is also bad in my upper chest and shoulder area. I can't sleep on either side, because it puts pressure on that upper chest. The pain radiates down into my arm even. I have had EKG and been to a cardiologist, who says this is not heart pain.
I know the two are related, because when one hurts, the other hurts. My artery actually bulges out -- almost the size of a kernal of corn or something.
Am on a waiting list for a neurologist at a teaching facility -- 3 months out.
Am taking Gabapentin - 1200 MG/day -- and aspirin. Doc says don't take the aspirin, but it's the only relief I get.
Does anyone else have the chest pain along with the ear and neck pain?

I've had this condition for around 17 years, now. I was not dx'd until 2002, and then again, more thoroughly, yesterday. As a result of the chronic carotidynia, I have Chronic Paroxysmal Hemicrania (headaches), Meniere's Disease, and a great deal of dysfunction with the use of my eyes and eye muscles, including a couple of bouts of retro-orbital neuritis. My carotid involvement is primarily on the right side, with a great deal of swelling in the artery -- at times it bulges out of my neck.

I'd attempt to describe the pain, but I am guessing you all know about that. I do have flare-ups on my left side, infrequently, but they aren't nearly as bad. My vision issues are bilateral, as well as the forehead muscle paralysis, and the optic neuritis was on the left side. The Meniere's is bilateral, with the right side being the worse. I also get chest and shoulder pain, which feels like radiating pain, and it sometimes radiates down my arm or into my gut.

It has altered my life, drastically, but not necessarily for the worse, I think.
For the pain: I used to react to the overwhelming severity of the head/ear/eye/neck pain, and I took a lot of prescription NSAIDS. I was always feeling for it and dreading it. Throughout the past 8 years or so, I've learned to relax and let it go, and just live with it, reacting as little as possible. PT and biofeedback really helped with that. The guarding that was happening in my body as a reaction the the severity of the pain was causing calcified lumps in all of the tiny, autonomic muscles of my scalp, etc. That guarding was causing the pain to be MUCH worse. It also caused spinal compression, and my vertebrae were locking together, and I have ground a few teeth completely out of my mouth. With the relaxation/biofeedback, I have significantly reduced the impact a flare has on me, with regard to the pain and associated damage. I also will use Tabasco sauce, and sometimes a little whiskey in hot tea with honey and lots of ginger, to deal with the throat/ear pain. I always wear completely covering amber-tinted sunglasses outside, which helps my eyes. I cannot use the new CFL light bulbs, or fluorescent lighting, because it triggers the pain, so I just use regular, low-wattage lights. I can't put anything in my ear, because it triggers the stabbing pain, so I don't, unless it's a tiny piece of cotton with olive oil and a drop of Tabasco. Onions cause a flare, and so does garlic. Often I have to eat only soft, warm foods, or it will start it all up again. I take Naproxen when it's really bad, and 2mg valium often helps get rid of the nerve pain. Proper sleep habits always help me, but it's hard to go to bed when your head hurts so bad you want to use a bolt gun on it. I try to keep to early bed and early up routines, with a short nap in the afternoon. I usually do best, with that. I live in an arctic climate (North Dakota), and I've found that going outside when it's subzero out really does help a lot. I haven't tackled the malaise very well, yet, but if I don't let myself get frustrated or discouraged, I do manage to keep up with daily life much better. A flat-panel monitor has made it easier to look at a computer screen with less eye pain, so I've stayed in close touch with old and more recent friends via facebook, which has been a blessing.

That is my experience, and how I've coped, so far. I am hoping to get more creative, and make my life even better within the limits this has put on it. I would really like to hear more about how you have all coped, and what has worked for you. Also, what medical treatments you have tried which have worked. It is so great to have found this board, and read about others experiencing what I have! Thank you for putting your experiences out there.

Welcome to NeuroTalk Linn. This is a great community with lots of nice folks. I hope you'll find some useful information and make some friends as well. Thanks for sharing your experience in dealing with this rare condition.

The following link is our new member introduction forum:

http://neurotalk.psychcentral.com/forum88.html

If you post there you'll get more replies from a variety of forum members. Take care.

Hello everyone:

I have just returned from the ER and was diagnosed with Carotidynia. One symptom I am experiencing that is absent from everyone's posts regarding this subject, is blood. It started a week ago. I first noticed it when I turned a certain way and my neck (left side) hurt so terribly. When I touched the area on the left side of my neck, it felt like an electric shock and I jump because of the pain. Progressively, my left ear started hurting and my left jaw. Then a few days later I was in so much pain (on Memorial Day), I called my GP/Endrocronlogist and I asked him for antibiotics because I assumed I had an infection (sinus/ear). Two days later the pain was still so bad and I woke up with something slimely, wierd in my mouth. Went to the bathroom and I spit up blood. Went to my GP and he did an x-ray, and did NOT look in my ear or throat. He focused on me "coughing" up blood and assumed it was an upper respiratory issue and rushed me out. I went home laid down and woke up to excruciating pain on the left side of my neck, jaw and ear. I looked at my pillow and there was a blood stain on my pillow case that went through to my pillow. Alarmed, I called a friend who is a gynecologist and she told me to go immediately to the ER because she was aware that I had just gotten out of the hospital two months ago with a TIA (mini stroke). She told me she hoped a blood vessel was not thinning. The TIA focused on my left side as well with temporary paralysis on the left side. I am wondering is there some connection. At that time, in early March my doctor put me on a beta blocker to slow down my heart rate and a baby aspirin regimen. What I am attempting to discover is if there is some correlation with: 1) TIA/Mini stroke; 2) Beta blocker medication; 3) high blood pressure; 4) thyroid conditions; or 5) being on an aspirn regimen - ALL of which I have.

Please help. I have missed two months of work because of the TIA. I almost feel totally disabled because of this TERRIBLE pain.

Thank you for your time and attention.

I was diagnosed with carotidynia several years ago. I had what felt like an impact wound on the left side of my neck. It came and went for months. It kept me awake at night or would wake me up repeatedly, and it ached constantly. I went to different doctors, and even went to a medical school library to research carotidynia. I was placed on prednisone, NSAIDs, and pain killers. Nothing worked. Then I went to a rheumatologist, who gave me a script for Flexeril. He said to take only half of one pill about a half hour before bed every night. It worked immediately! I took the Flexeril for about a week, and I have never had any real trouble from carotidynia again. On two occasions, I thought I was having a mild recurrence, but each time, a single half-dose of Flexeril warded off any relapse. A generic name for Flexeril is Cyclobenzaprine. I keep a current prescription on hand, but except for the two occasions I mentioned, I have never used it.

By the way, I will die before I ever take prednisone again. I thought my heart would beat itself to death; I couldn't sleep; I gained 30 pounds in a month and could not find enough food to suppress my insane appetite (I still haven't been able to lose the weight I gained); and my hips and legs ached (and I still have recurrences of aching hips). And prolonged use of NSAIDs and narcotic pain killers is not good for you.

I sure hope this helps somebody else -- or at least gives them hope that there is a solution out there.

I think I have this as well. I have had mine most of the time for the past 4 years. I had pain and throbbing at the carotid bifurcation (with ear and head pain) on the left side for a month in 2008. Went to the dr. who did a CT scan and an MRI. The CT scan suggested a blood clot. The MRI suggested no blood clot. The head and neck surgeon told me there was a slight narrowing of the artery but blood was getting through so nothing to worry about. It eventually went away. Two years later, I had a carotid artery dissection on the right side (another story - not fun). When they compared it to previous imaging, they said I had also had a carotid artery dissection on the left side in 2008 that was misdiagnosed. My right artery was occluded with a blood clot in 2010 but eventually reopened with anticoagulation therapy. The right carotid is now smaller in caliber compared to the left. About 5 months after my most recent dissection, I developed this constant pain at the carotid bifurcation on the left along with deep ear pain, facial and jaw pain, and eye pain on that side. I take 4-6 motrin per day anyway for head pain left from my last dissection but it does not seem to help with the other symptoms which sound like carotidynia. One of my neurologists suggested I might have carotidynia a few years ago and I tried a round of steroids and various migraine meds and migraine prevention meds, none of which seemed to help me. For now, I just grin and bear it. It affects my qualify of life. I also developed chronic dizziness and bouts of vertigo about the same time. Not sure if it's related or not. Since the dissection in 2010, I developed other weird symptoms and now I'm at Stanford after seeing many many doctors and they say I have lupus. So, I thought the post from another writer about carotidynia possibly being autoimmune was interesting. I'm still interested in hearing from others about remedies that have worked. All the best to you!

I've had symptoms for years, at least 6, but gen dr couldn't figure out what was going on. My symptoms have been flares of pain, mostly throbbing, aching pain on left side of neck. Also, I have pressure pain when I fly upon take off and at concerts with loud music the intense sound waves really hurt and I'll actually cover my left side of neck with my hand. Without knowing what was causing the problem I have found taking 2 aspirin 1 hour before take off made flying tolerable. My gen dr suggested everything from post nasal drip collection to muscle pain from my purse to enlarged tonsils. Finally she referred me to ENT and he immediately zeroed in on my carotid as the source of my pain. I had MRI a few weeks ago & results didn't show anything significant and ENT dx me with Carotidynia. He wanted to put me on Celebrex- I said no. I have appt in 2 weeks with vascular surgeon who will do ultrasound. I'm sorry so many of you are hurting so badly and many have much worse symptoms than I have, but I'm both frustrated and concerned about this dx. I'm reading that this is really a symptom of something more serious. Any of you found that to be true. I do have a very long history of migraines with some months having more than 7 days of migraines. I also have allergies. I was supposed to have a hysterectomy for endometriosis a month ago but that's on hold because ob gyn is concerned about putting me under without clearer dx. Anyone had surgery with this and was there any problems, hazards? Thanks for any answers, none of the Drs seem to know what to do with this.