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

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.

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.

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.

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 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...

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I look forward to seeing you around the board.

Abbie