HI Stephen, I have had the symptoms for about as long as you. In the end I was begging for an ultrasound of my neck. When I finally had one, the results came back witha 55% stenosis in my right carotid artery. I was rushed off to see a Neurologst in one of the best hospitals here in Perth WA, and it was at my suggestion that I had an MRI. I had been put on all these different pills for a Stenosis, and they were making me feel worse than I already did. I thought I was gonna have a heart attack. I had my MRI, and low and behold NOTHING showed up. NO narrowing of anything anywhere. In the meantime while waiting for my results and app with the top doc, I searched the net and found that my symptoms matched Carotidynia.I asked for my money back, seeing as I had already found out what was wrong with me, but no chance of that happening.!!. So I went to see my GP and asked to have a short course of steroid. She balked at the mere suggestion, but I insisted that she do that. In the end she gave in and I was on Predisnone for only 4 days at 20mg 4 half 4 quarter then off. I was pain free for about 6 months and only last Friday I got the symptoms back again.. So I just took a quarter of a pill for two days then wean off. I am feeling a lot better today !!. I honestly dont know how to cure this. I have had Mortons Neuromas in both feet, I also had a Frozen Shoulder a few years ago too. I had to have injections straight into the feet in between my toes. It was very painful but they worked after the third go. I also had injection in shoulder and a very painful time at the physio for over a year.I am wondering if all these symptoms are connected in some way!. I also get numbness in my right hand first two fingers and thumb are bad sometimes. I went to see and eye specialist aswell and he said I had Atypical Migraines. My eyes flash from side to side I cannot do anything not even sleep till this passes, I am also quite sick and dizzy. This is Aytpical Migraines according to him. Well I am sick of going to the doctors, so now what !!.. Let me know how you get on with your treatment from now on. Does your flare up a bit if you talk, or eat sometimes mine does. You can see my neck throbbing and its a bit swollen at this moment. The docs thought I had an ear infection too... Keep in touch Sedatemink.

I would like to say I feel for those suffering with carotidynia. Recently, I was diagnosed with this illness by an ENT and have probably have had it for well over a year. During the past year, it was unclear as to where my pain originated. Since much of my pain seem to be in the general area of my jaw, it was thought that a previous root canal was not effect an it was finally decided by myself and an endontist that I should have my tooth excised. This proved to be ineffective and my pain and fevers continued. Finally, I could no longer concentrate at work or even get a full night sleep that I decided to see my doctor. My internal medicine doctor prescribed blood tests and a muscle relaxant but this too proved unsuccessful. My doctor then referred me to an ENT and he immediately diagnosed me. He put my on Ibuprofen, which made me very sick to my stomach and unable to work. My condition has increasingly worsened and I have constant, some times excruciating pain on the left side of my neck. So often my pain is accompanied by low-grade fevers with pain that radiates upward to my ear. I often feel like I can barely make it through the day. I will be consulting my ENT for other treatments such as the ones mentioned on this site. If anyone knows of alternative treatments such as vitamin therapy, acupressure, or diet that can help, please post your comments to this site.

Some of these symtoms may be the result of Myofascial Trigger Points in the muscles of the neck especially the Sternocleidomastoid, Temporalis muscles and Zygomaticotemporal (branch of trigeminal nerve) can be entrapped ny the temporalis muscle. There is also a trigger point in the right lowr medial chest that can influence the heart.

Read the below link and review. Some of these can be self treated. There are many ways to treat trigger points in the muscles. The most important treatment is a home stretch program.

Head and Neck Pain
http://www.round-earth.com/HeadPainIntro.html

Especially read about the Sternocleidomastoid muscle at:

http://www.round-earth.com/SCM.html

also Nerve and Vessel Entrapments by Muscles: Zygomaticotemporal (branch of trigeminal nerve) can be entrapped ny the temporalis muscle.
http://www.round-earth.com/Entrapment.html

Hi Sedatemink,
All you symtoms can be related to something called Morton's foot Structure , a major perpetuating factor of Myofascial pain and dysfunction.
look up on Google.
Regards, Joe

I have just been diagnosed with cartodynia yesterday it started last Saturday I agree it is one heck of pain I was very scared never had anything like this I'm trying a heating pad and ibuprofen for now

Hello Trish. I actually have had carotidynia since I was approximately 8 years old. I would have excruciating pain in my ear & chronic migraines. Unfortunately, it went undiagnosed for years. After several MRI's, CT's & many visits to the Neurologist, ENT to no avail. It wasn't until a few years ago that an Urgent Care appt Dr. told me that I probably had Carotidynia. This CRAP HURTS like hell! Anyhoo, I have experienced a great deal of pain relief because my ENT Dr. put me on Neurontin 600mg which I take every night. I do still experience episodic pain in my ear as well as migraines, it is not nearly as much as it was before. I hope you find a treatment regimen that will work well for you.

I have been going through this nightmare now for a year was diagnosed with carotidynia a year ago in November. I went to the ENT with the coughs, swollen lymph nodes, and headaches around the temples and pain on the right carotid artery. I have had numerous tests ran and I know with carotidynia that not really a specific test would detect it.

I have had a ct scan, cta, and now a brain MRI and still waiting for the results that I had done yesterday. The ENT referred me to a rheumatologist and she didn't believe I have carotidynia and ordered blood tests. Then I was referred to a vascular specialist and he doesn't know what carotidynia is and didn't believe I have it as he thought it was a muscle when it is the bulb on the carotid artery that is distended.
I was then referred to a neurologist and he ordered the brain MRI but he doesn't believe I have it as he thinks it is a muscle. He doesn't know what carotidynia really is either. The symptoms have gotten worser now as I'm now having dizziness, balance issues, and coordination issues too. I have pains around the left and right side of my head.
I agree with the ENT diagnosis as I believe and know from the symptoms I'm having that it is the carotidynia. I think I'm now having chronic symptoms of carotidynia as I been having it now for a year and the symptoms are getting worser. I also see black dots with my vision when in the dark and it is like black snow across my vision.

The ENT said that most of his patients that has had carotidynia it usually goes away. For me my symptoms are getting worser. Any suggestions on what to do or where to go for treatment for this problem? It is frustrating as the doctors I have went too don't know carotidynia and don't believe in the diagnosis as they don't see it on the tests. They don't give suggestions on where to go to get treated or recommendations on what to do. They don't have me on any medicine for this problem. I would like to have some suggestions and it helps to come to this support group and know that others are going through what I'm going through and can relate.

I have been suffering from pain in the left carotid artery for around five months now. It is incredibly painful. It started when I used to check my pulse constantly due to health paranoia. One day as I was checking my pulse I noticed a fullness where my pulse is in my neck. I ignore it for six weeks before eventually going to the doctors. I didn't touch it again in that time. They felt it, although I didn't want them to, they agreed there was a swelling there and referred me to ent. Anyway, it got worse immediately after they touched it, and I had numerous doctors feeling it making it more tender each time, until after an excruciating ultrasound, which found nothing, the pain became constant and destroyed my life. I can't turn my neck, talk loudly or breathe in deeply.
Like a previous poster, ivehad pain during flights, the worst pain I've ever had. I also have ear pain and my eye is painful, it looks like it's sinking slowly into my face, and I get pain on the back left of my tongue.
Mri found nothing, but I can see that the artery is sort of more prominent. I don't think a scan is going to pick that up. It throbs when I stand up/my heart beats harder, and I can hear it in my left ear. I get migraines also and even car rides make me dizzy.
The doctors now think it's anxiety because I've had a history of that, but I am one thousand percentmsure it is not that. I feel like I'm in a nightmare. How do people walk around pain free and not realise how lucky they are. I feel such an idiot also because I brought this on myself.
I am scared that my artery is always going to be swollen or sore, I can't feel it getting better, I used to touch it a lot and I don't know what to do. I am going to beg the doctor for steroids first off, then possibly some other meds mentioned on here. Thanks for these posts, they have helped me a lot.

Hi Carotidpain

Welcome to NeuroTalk .

I hope that you find the community as knowledgeable and supportive as I have.

I can't offer you any specific suggestions about your carotid pain but hope that other members will be able to.

All the best.

Hi Sedatemink, i too live here in Perth, and i seem to at least be at the start of this blessed neck pain. Fortunately i dont get an other problems associated with it like you do....yet? How did yours demonstrate itself. i too have numb thumb. I wonder which hospital and neurologist you were under? i too am fed up with specialists, who charge the earth and keep you waiting for hours and hours!!
smurff