Can anyone who has had chronic carotidynia please let me know how long your symptoms have been present and what you have done to get rid of it or minimise the symptoms?
Has anyone with alternative treatments to steroids and NSAIDS?
I have had it for 2 years with some resolution but recurrences. Have had two big courses of prednisene and lots of ibuprofen, but I cant exercise as it recurs and flares up! It did settle for a while but has flared up again for past 6 months. I am still able to work but life has a big filter on it now! Any help appreciated

Stephen

Hi Stephen,

In April I will have been living with this unbearable and excuriating syndrome for four years!!! Mine in on my right side. You can actually see and feel the infalmmation on the carotid artery on my right side. The ice pick earaches are unbearable at times. Last year the pain spread into my face causing a drooping eye lid and horrible migraines. My two neurologists have pretty much exhausted ways to alleviate my pain and discomfort. I have been on steriods, anti inflammatories, beta blockers, seizure medication, nasal sprays and narcotic drugs ( demerol and now percocet). I am waiting to go to another province for botex nerve block. I have been told by numerous physicans that mine is the worst case they have ever seen. I have to keep a list of previous medications that I have tried because when I end up at the hospital for a double dose of morphine they know how to help me. Alot of the doctor's haven't heard of this syndrome or seen it before. They relay on me for treatment options. I usually end up having a double dose of morphine. The needles don't help much but allow me to get a good nights sleep. It took close to 2 years before I was diagnosed. My family physican told me that she learned about the condition in medical school but had never seen a case. I went to five doctors before being diagnosed. My neurologist here didn't even have any information to give me so I had to rely on the internet. He said that he had only see a few cases in his 25+ years. My out of province neurologist was more helpful. He has dealt with this syndrome before but unfortunately the medications that had worked for his patients didn't work for me. He even consulted with a colleague in Paris because this doctor is researching this syndrome. The only thing that helps keep me sane is my heating pad. I am on my third! My family and work have both suffered because many days I'm not very functional. I don't know about you but I'm sick of being sick!!!! Even now writing this I have another ice pick earache...it is horrible. I hope the you can find relief because heaven knows I sure haven't!!

Islandchip

Hi Islandchip,
Sorry to read of your sometimes debilitating and ongoing chronic carotidynia condition. I have recently spoken to an immunologist who suggested methotrexate to reduce the inflammation in the vessel. I have also wondered if an injection around the area with local anesthetic and steroids may be helpful like you might use for a tendon inflammation, but havent been game to try.
Who was the doctor in Paris, do you know? It would be good to have an national/international registry to see how many people are actually walking around with this diagnosis and what treatments have worked and how often.
Best of luck.

hello stephen4101 and islandchip

I just wanted to welcome you both to Neuro Talk , tho I am so sorry to read of the painful condition that brings you both here.

I hope you will find information and support here in our caring community

I have had this pain on the right side of my neck and face it is cyclic and flares vary in intensity. Fairs are very classic they usually begin with sore thorat cancer sores on the affected side neck, ear, jaw, temporal artery pain that extends from the front tempal across the side of the head over the ear and down the back of the head and neck on that side. I also get ear pain like a very bad earache. My doctor put me on prednisone. It worked wonderfully at doses of 40-60mg but when he tried to lower the dose (during a flare period) the symptoms would return. I did try NSAIDS but got no relief at all. I've heard Methyltrexate can be helpful. I am currently having a flare up of symptoms, if my symptoms recur during the steriod taper I am going to insist on trying the Methyltrexate. Between flares I do have periods that I forget that I have this "pain in my neck" and boy is it ever. I'm not sure if it will ever go away but I will say that when I get the flare under control the symptoms do seem to resolve to a faint funny feeling on that side of my head. Kind of like you know something is not right but it really doesn't hurt at that moment. My first bout with the symptoms was the longest I think it lasted several months. Flare ups seem to have a predromal syndrome of about a weeks worth of symptoms and then the head/neck/ear pain begins. I have tried Migraine medicine for the pain ( I have a history of severe migraines) because the symptoms are similar (unilateral head pain, light&noise sensitivity)but I find that it dulls the pain doesn't help resolve it. I have tried muscle rubs (tiger balm) again, some temporary symptomatic relief. I wish I had more information for you. My doctor doesn't believe in the diagnosis he refers to carotidynia as a "symptom" but he really hasn't done any testing aside from SED rate to see what else it could be. Other symptoms during really bad flares are: puffiness/swelling on the affected side of my face, runny nose on that side, I have short term memory problems when the flares occur, and sometimes dyslexia (or it seems like dyslexia I have a hard time writing words correctly and dialing the telephone numbers in correct sequence. Sometimes I've had to try and dial a phone number as many as 7 or 8 times. I can be very frustrating. You tell your brain what you want your body to do but it just seems to do it's own thing. I hope this is helpful.

I just got a dx for this syndrome, but it seems that it's secondary to something much larger. Does anyone else have swelling in other parts of thier body? I have swelling in all of my joints and have on going muscular pain, but it always starts with my carotidynia. Anyone?

Islandchip have you had a catscan to make sure you don't have cataroid dissection drooping eye is one of the symptoms

Hello Tish and WELCOME to NeuroTalk!

I just wanted to let you know that Islandchip has not logged in to NeuroTalk since 02/2007, so it's not likely that you will get a response from this person.

You can tell when a member was last logged in by clicking on their name and looking at their profile... in the upper left under their name you will see "last activity....."

I see that earleebyrd has responded to your posts...

Please feel free to roam around and join in anywhere!

If you have any questions, problems, concerns, or just need help in finding your way around.... please don't hesitate to ask... someone will always be around shortly to assist you in any way that we can.

I look forward to seeing you around the board.

Abbie

I too was diagnosed with carotodynia today. Had a bad ear ache for over a month. At first I thought I had a bad build up of wax and used debrox...no relief. I went to a Minute Clinic and they thought perhaps fluid in my eustachian tubes and gave me Flonase. On Monday of this week I went to my primary doctor and was told I had an ear infection and was given Ciprodex drops. My ear and upper neck pain was only getting worse. I went to an ENT this afternoon and was told I have carotodynia. I was told to take ibuprofen and put warm compresses onand all should be well in a few weeks. The doctor was pretty casual when he told me and did not seem concerned. I have gotten very confused with all the reading on this I have done in the past few hours. If my pain does not subside in a few weeks, should I go back to the ENT or a different type of doctor? Thank you all for your posts, your sharing and your information. Glad I am not alone.

Hello everyone,
I've been looking for others with my condition for so long! Seventeen years ago I was diagnosed with Carotidynia. It took 10 months, 10 doctors, and many misdiagnosis until a neurologist figured it out. My story is the same as many of yours--medications, tests, intense pain, beta blockers, etc. I was on prednisone five years after I was diagnosed. I had an allergic reaction and lost all of my hair. I sank into a huge depression and had virtually no pain relief. I had anaesthesia via ultrasound shot into my C2 nerve in my spine. No relief there either. After all this time, I've never had a day without pain. My doctor tells me now that because I've had it so long, I'll probably have it forever. There are days I can't even comb my hair on my right side of my head; the pain is so intense. I've been on Neurontin and Verapamil the longest. When my neurologist leaves or my insurance changes and I get a new doctor, I get frustrated having to explain my story again and again. I get offended when doctors call the pain a 'migraine.' They don't understand that I have two very different pains in my head. I still have hope for new medications and I truly hope that there is a cure someday. Thank you, everyone, for your stories. It helped me more than you know. Lisa