Hi :-)

I have Chronic Carotidynia, which is part of a larger vasculitis that is going to be investigated soon. Basically, the wall of my carotid artery, where it bifurcates in my neck (right about where you feel your pulse), gets very inflamed. It's like I get an attack of inflammation, which can last months, and it swells out like a big golf ball. It's very painful on the outside of my neck and inside of my throat, like strep throat painful, and often into that side of my mouth. It feels like an ice pick is stabbing into my ear, all the way to that place in my throat, also. This causes inflammation in the rest of the arteries in my head, and also the whole "malaise" thing, and fevers, and the difficulty eating/digesting food (because of the vagus nerve and also the pain) and it also inflames a number of the cranial nerves and other nerves in my head and face. Over time, the muscles of my forehead have completely quit working (no need for botox, here!), and my eye muscles are too weak to use well. I have retinal issues, and have had a few bouts of optic neuritis, also. The tissues surrounding my eyes get inflamed (internal tissues), and my eyes get very light sensitive and constantly very painful. I can't look to the right without extreme stabbing pain in that eye. I don't produce tears any more, either. The right eye has almost continual stabbing pain during an attack - so, most of the time. My eyes don't track well, either. It has also caused Chronic Hemicrania headaches, which are also called ice pick headaches. They are like an ice pick stabbing from the base of the back right side of my skull, through to my ear and eye. Sometimes the whole thing happens on the left side, but only briefly. I get "bruising" between my eyes and temples, too. Then, I also have bilateral Meniere's Disease as a product of this, with constant tinnitus and balance issues, and hearing loss. I end up really weak, with difficulty organizing or planning, and fatigued. You probably understand most of this, because they kept investigating me for MS because of most of these symptoms. The rest of the vasculitis causes weakness and bruising in my upper arms, and very weak hands, and then I lose sensation in my hands and feet, as well as bruising on my legs and ankles. Also, I've had blood in my urine for more than 20 years, now, so it is affecting my kidneys (I reacted to the dye they used for the kidney scans, so they never completely evaluated that). And, I have some long-standing cardiac problems that may or may not be related.

I made my peace with the extraordinary and nearly constant pain in my head after about 7 or 8 years, but it's been the malaise and lack of ability to organize that has been my biggest challenge. And, the loss of the use of my eyes, of course. I was always kind of a driven person, and I never held still, and I was always on top of everything -- housework, job, everything. And, I was ALWAYS very athletic. I never realized how much of my identity was tied into being that person. I still have the habit of enlarging my functional life when I'm not having an attack, and making too many plans or commitments, so when it hit, it would always get me down.
Now, I've learned to separate the functional, mechanical bits from the emotional stuff, and I just make a new plan, and I have learned to let go of the things I can't manage, no matter what that means. I don't look at the ultimate costs of not being able to accomplish what I need to accomplish any more, but instead I just try to find things to do that I can do with my time, and to find the adventure in my life, as it is. Like you said, day to day :-). I figured out that I can spend each or every day being frustrated or miserable, or spend them being happy regardless, and either way, the days still pass, so I might as well find the joy and happiness, because this IS my life. (It seems that makes me a better person to be around, too, according to my very patient husband).

I don't talk about my medical issues much, except (rarely) with very close friends or family. This is simply "who I am", now. It's like being short or tall or left-handed or right-handed. I don't feel right about having an identity based on "being limited", especially because, unlike more commonly understood diseases like MS or lupus or others, people aren't going to understand it anyway, and then they don't know how to react with that about me. (I am simply who I am, *regardless* of my challenges.) That's why it is really nice to hear about/from the people on this board. Sometimes I feel like a "club with one member", and it is good to know that there are others out there who also get up every day and have these kinds of unique challenges to work with :-). Not that I wish pain and dysfunction on anyone, but it is nice to share with and hear from people who I feel like I can understand.

Thank you for asking -- I know I ended up writing much more than you asked about.

Hi Linn . I too have been diagnosed with this. This has been going on about 18 years. Mine bothers me in my throat, and ear, neck, and gums at times. I have thought forever this was my tonsil and something was wrong. I have been to ENT's through the years and one has finally said caroditis. Mine does come and go and of course right now it is here. Have you ever considered that this may be stress induced at times? I will post more soon.

Welcome to you too

Suzie ~

Hi :-). I do know that stress can set this off. My current flare-up was caused by a bad bout with H1N1, and I know some big dental work last winter started it up, then. If I push too hard when I am feeling relatively well (which is easy and oh-so-tempting to do!), it can start up.

Do you get it all around your gums? Or just in a few spots? I know what you mean about the tonsil thing!

How are you doing with this?

Linn

Hi Linn. I get it just in a few spots on the gums but almost always throat and ear is affected. What did you mean by you understand the tonsil thing, did you also think this is what yours could be? This is so crazy but gotta keep going. I just hope this bout doesn't last too long, I certainly enough when I'm not having to deal with this!
Thanks
Suzie

Suzie,

I did think that I kept getting tonsil infections, or peritonsilar infections. I was dx'd with carotidynia in 2002 (although I've had this stuff for decades), and I don't think I actually understood or believed it. I went in just recently to beg the new ENT to check to see if it couldn't just be a persistent infection. I do have fistulas (or holes) in my throat, further down, which leak air into my neck tissues, so I thought that might be "evidence". He was very thorough with ruling out the infection thing, though, much to my dismay. That would have been so much easier to have dealt with ;-). I had an hour or so of disappointment that evening, then I got over it.

I seem to get hit at the beginning of every winter, for sure, and it lasts for months. I was hoping to ward it off this winter, but I had the flu, and so here I am, settling in for the "long haul". I stocked up on some good audiobooks, and I'm about to be an Auntie again, so lots of crocheting to do -- I am prepared :-).

Linn

Linn,
WOW! I cannot believe what I am hearing from you. I certainly am not glad you have this, but I am sooo glad to have someone who understands this and someone to talk about this with! I had alot of tonsil infections through out childhood. So when this pain, swelling etc started, It felt like it was in my throat and ear, I automatically thought tonsils. I have had a few infections over the years and do have large cryptic tonsils. But I have been to three to four ENT's many times---they too have never said that there was any severe infection, as a matter of fact one of them, said many times, that there is NO infection! Just like you, I was so disappointed, I felt as if that would be alot simpler to deal with.
I have had to deal with many stressors through out my lifetime and truly believe that they way my body handles stress has alot to do with this for me, and I also see it show up at times of a cold, flu, etc. I will say that it has actually been two years since my last attack until last week! I was severely upset that this was back, but am trying to settle myself into dealing with this as it comes. I do work everyday and have three children ages 17, 16 , and 14. So you can imagine! BUT again, I am soo happy that I have found you, it is really a breath of fresh air. And congrats. on becoming an aunt again, enjoy!
I was first given this diagnosis in 2007---thats when I truly began learning about all this, after years of wondering what was going on and alot of time of panic and fear. At least it has a name now, that's something. Just as you have made reference to, we don't have a choice about everything in life, but we can choose how we deal and react to things.
No matter how hard it may be.
You are in my prayers, please continue to check in and respond, it's a joy.
Suzie

Suzie - I had a lot of tonsil infections throughout childhood, too! Have you ever been evaluated for a vasculitis? I am starting to realize that this has been with me since childhood, just not the carotidynia part. Vaculitis can start early, and can be subtle for many many years. Carotidynia is typically directly linked to vasculitis, too (I think it is a minor sub-category of vasculitis, all on its own). I wish my family pediatrician was still alive, so I could ask him if he actually did cultures for the repeated strep throat, tonsilitis, etc, or just "knew" it was, and wanted to save my parents the cost. But vasculitis makes sense of the anemia I had for most of my childhood, and until I was about 30, as well as the elevated white blood cell count, etc etc etc.

Aren't you glad you finally know? I knew I wasn't crazy, but still - I didn't have any way to organize what was happening to me, or know what to expect, or even what, for sure, to do about it. What do you do for it, now? Do you have any tricks or tips you can share with me? Is yours worse in the winter? (I don't know if you are in a cold-weather region, so that might make a difference). How do you adjust? Are you able to work outside of the house? I can't imagine dealing with this and having three teenagers! I hope that they are unlike most teens and are able to be supportive of you.

It is supposed to be triggered by colds or flu or any virus. I would guess that stress sets off inflammatory things in your body, so that would definitely trigger it. Do you think your problem with handling stress might just be related to being affected by an unknown medical problem for so long? I know that it sure caused me to have issues with anxiety and stress, for a long time. Not any more, though. So much of what I thought was my temperament or emotional state was actually just a result of constantly having to readjust to something that was happening to me on so many physical levels that I didn't see or understand, or even know was there. For instance, I thought I had anxiety problems, but it was actually a product of my eyes weakening, combined with inner ear issues. I didn't realize my eyes were weakening, then. I would spend an afternoon at Costco and feel like I was on the edge of a panic attack. My husband would all but have to sing me to sleep that night. Too much noise, too many people, lights, movement -- too much input -- would cause that. So does heavy or tight shirts or jackets, because my upper arms are so weak, but I didn't realize that, then. Now it's clear that it is (and was) directly caused by the sensory difficulties.

I bring that up because it sounds to me like you might be being a little hard on yourself, but I don't know. You're the best judge of that :-).

It is really good to talk to you, too!!

Linn

Lynn & Suzie,

Welcome to NeuroTalk. Great to see you have come to be with our loving group. There are a number of friends will to assist as we can. Just let us know how we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene