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