hi,

My name is Lucii I'm new to the forum. I'm 26 years old.

I've recently had a lot of problems with pain in the right hand side of face, jaw and neck often (but not always) accompanied with quite bad swelling to my neck. The first time this was happened I was admitted to hospital for 2 weeks with suspected mumps and meningitis - I got better and I thought that was the end of it... however this has happened very regularly, I'm now getting pain on an almost daily basis and swelling every couple of weeks. I'm usually pretty good with pain and I would never go to A&E unless absolutely necessary but this has left me in tears many times over the last few months, and 3 hospital admissions in the last 6 weeks.

I know it's bad to 'google' your symptoms but I'm really desperate. I've come across carotidynia and I think this may be what I have. Does anyone else have this? How are you treating it? More importantly - how do you cope?? I've tried a whole range of different medications opiates, anti inflammatories, neuropathic pain killers e.g gabapentin, but nothing seems to help. At the moment I am taking sumatriptyn and prednisolone and temazepam at night to help me sleep.

I would love to hear from anyone else who has this.

Many Thanks

Lucii

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. 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.

Who knows whether this would work for you, but it's worth talking with your doctor about it.

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 -- or at least gives you hope that there is a solution out there.

I have to wonder if this neck pain is spasm generated? That is how Flexeril works.

One thing you can try for your neck to see if you can abandon the Flexeril is the new Morton Epsom Lotion. This is what I put on spasms (which I have alot of due to arthritis).

A pea sized glop of this wonderful new product will take a spasm away within 1/2 hr or less, and used every day on a problem area, you can prevent further ones.

This is new, and at WalMart and Walgreen's now locally or on Amazon online. It is not in all stores yet. WalMart's is the least expensive...at 5.98 for 8 oz which lasts a LONG time. I love this and have introduced it to many people here and most of them are quite happy with it.

http://www.amazon.com/Morton-Epsom-L.../dp/B008X365AU
you can see by the reviews on Amazon that NT is not the only place where people like this product!

You don't slather this on...the magnesium if overused may over-relax you and make you tired. I apply mine almost always at bedtime for a good sleep. This will also take down swelling and it has worked for my problematic ankle which swells up now and then. Most people in the US are low in magnesium containing foods and are running on 1/2 empty daily. This is an easy way to restore you and also help with muscular pain/swelling and spasms.