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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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06-26-2011, 11:32 AM | #21 | ||
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smurff |
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06-30-2011, 04:22 PM | #22 | ||
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08-01-2011, 11:37 AM | #23 | ||
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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 |
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10-17-2011, 03:55 PM | #24 | ||
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The pain starts in either the R or L inner and proceeds down ear channel to the chest area. There is a sensation of acid reflux and ear ringing.
This can go on for for up to an hour. This can repeat either be 2-3 in 6 months to not having it for over a year. Had gone to a local ENT, had a head MRI with no indications of any issues. Any emails and responses are welcome. |
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11-04-2011, 06:21 PM | #25 | ||
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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
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11-06-2011, 01:18 PM | #26 | ||
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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 |
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12-10-2011, 07:17 PM | #27 | ||
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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.
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05-31-2012, 03:10 AM | #28 | ||
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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. |
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01-03-2014, 08:46 AM | #29 | ||
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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. |
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11-05-2014, 04:29 PM | #30 | ||
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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!
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