chronic carotidynia
 

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

Chronic Carotidynia
 

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

Chronic carotidynia
 

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

reply to persistant carotidynia
 

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.

Carotidynia secondary?
 

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?

Carotidynia
 

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.

Carotidynia Talk
 

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.

Myofascial Trigger Points
 

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

Morton Foot Structure
 

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

Carotidynia a symptom of something bigger
 

I am new here and looking for ideas. I was diagnosed with Lyme disease several years ago and recovered to some level on a lot of antibiotics. However, two years ago I developed throat inflammation, thrush and severe headache with vertigo, nystagmus and vestibular nerve damage. I have never recovered from this and have an ongoing constant headache, mostly on one side of my head centering around my ear. My vision in that eye has deteriorated. I also have memory problems, especially when my headache is the worst. I have had maybe 4 or 5 days in two years without any symptoms.

I just came across an article from a Lyme specialist saying he found carotidynia was common in Lyme patients. I have not had this label applied to me, but it sounds like my situation, including the pain just to one side of the larnx. I actually had never noticed that I have a tender spot there - mostly the ear and head pain are so bad I would not have noticed a pain in the neck!

I have seen two opthomologists, one ENT and two neurologists with no real diagnosis. The only thing that helps me at all is Lyrica, and it makes me even more spacy during the day. I do sleep better at night with Lyrica. Oh, I didn't mention that I have anxiety problems many days. These also disappear on the few good days I have. Bright lights and loud noises affect the nerves in my leg on the same side as the head pain, or where the head pain is worse, since I have damage on both sides.

I wonder if we all are carrying a chronic infection such as c. pneumoniae in our areteries? Has anyone noted any relief on antibiotics?

Thanks for any ideas.
GoWest
Las Vegas, NV

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

Symptoms
 

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.

carotidynia
 

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. :hug:

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. :hug:

Drooping eye
 

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

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.

Hello and Welcome!
 

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... :D

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

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

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.

Carotidynia
 

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

My condition
 

Carotidynia may be secondary....
 

It is striking how similar the symptoms that many of you have are to people who have been diagnosed with Eagle's Syndrome. I myself had my salivary gland removed a year ago to 'relieve' symptoms of carotidynia, but it didn't work. In my research since, I have found that my symptoms mirror those of a person with ES, and I am currently attempting to get a diagnosis. If your pain is anything like mine, I have great empathy... Would love to hear from anyone who has experienced the ice-pick ear/neck pain. Tracey

Reply to Tracey
 

Thank you Tracey for the ES reference.
Does your pain start out as a deep inner ear pain with a burning sensation that seems to travel down the ear canal(s) and radiate into your chest?
Thanks

chronic carotidynia
 

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.

Carotidynia and TIA
 

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'm Cured!!
 

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.

Chronic carotidynia
 

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!

Carotidynia diagnosis
 

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.

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.