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

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

Hi Linn, and welcome to NT! This is such a great place with many friendly, caring, and helpful people.

We're glad you found us!

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

Hi Linn,
No I have never been evaluated for Vasculitis. I have some of the syptoms, of different subsets, like I have had fevers before. I have had some circulation issues, small but still had them. Anemic during one of my pregnancies,etc. I have most definately had my share of anxiety and panic, and depression. But I am sure mine is and has been true anxiety. I am on an antidepressant and have been for about 10 years, also blood pressure medication, runs in the family. I do have an increased puse rate another vasculitis symptom.
Is is worse in winter, probably. I live in southern Misssissippi so it isn't really cold here! Any tricks to dealing with it, not really. I rely on lots of prayer and The Lord. Best trick I know! IF you have any please share them. Yes I do work outside the home, I stayed home with my children for about 11 years, I went back to work three years ago. I am 37 years old. My family is supportive, but I honestly try not to talk about it much. I talk most to my husband about it, and he is sympathetic.
Tell me your tricks and about North Dakota. I'm not very well traveled so share!
Talk soon,
Suzie

Hi Linn,
Missed talking with you today. Hope all is well.
Hope to hear more from you soon.
Suzie

Suzie ~

Everything is fine :-). The whole thing hit both sides, right and left, the other day, and that makes me feel crazy sick when I try to look at anything (or eat, or drink anything...). It's all good, though. I've adjusted, and I actually checked in to see how you are doing. I hope all is well!

Linn

Hi Linn, so sorry it hit you so hard this past week. I am dealing with a tooth issue on my left side the side that always bothers me, I've been trying again this week to talk myself into this being my tonsil! I feel so crazy at times. Well I'm signing off for the night, we have gotten in late from a weekend trip and I have work tomorrow. I hope this week proves to go great for you.
Suzie