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chronic carotidynia

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Old 01-26-2016, 10:33 PM   #31
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Default Carotidynia diagnosis

I've had symptoms for years, at least 6, but gen dr couldn't figure out what was going on. My symptoms have been flares of pain, mostly throbbing, aching pain on left side of neck. Also, I have pressure pain when I fly upon take off and at concerts with loud music the intense sound waves really hurt and I'll actually cover my left side of neck with my hand. Without knowing what was causing the problem I have found taking 2 aspirin 1 hour before take off made flying tolerable. My gen dr suggested everything from post nasal drip collection to muscle pain from my purse to enlarged tonsils. Finally she referred me to ENT and he immediately zeroed in on my carotid as the source of my pain. I had MRI a few weeks ago & results didn't show anything significant and ENT dx me with Carotidynia. He wanted to put me on Celebrex- I said no. I have appt in 2 weeks with vascular surgeon who will do ultrasound. I'm sorry so many of you are hurting so badly and many have much worse symptoms than I have, but I'm both frustrated and concerned about this dx. I'm reading that this is really a symptom of something more serious. Any of you found that to be true. I do have a very long history of migraines with some months having more than 7 days of migraines. I also have allergies. I was supposed to have a hysterectomy for endometriosis a month ago but that's on hold because ob gyn is concerned about putting me under without clearer dx. Anyone had surgery with this and was there any problems, hazards? Thanks for any answers, none of the Drs seem to know what to do with this.
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Old 11-15-2016, 09:27 PM   #32
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I have been going through this nightmare now for a year was diagnosed with carotidynia a year ago in November. I went to the ENT with the coughs, swollen lymph nodes, and headaches around the temples and pain on the right carotid artery. I have had numerous tests ran and I know with carotidynia that not really a specific test would detect it.

I have had a ct scan, cta, and now a brain MRI and still waiting for the results that I had done yesterday. The ENT referred me to a rheumatologist and she didn't believe I have carotidynia and ordered blood tests. Then I was referred to a vascular specialist and he doesn't know what carotidynia is and didn't believe I have it as he thought it was a muscle when it is the bulb on the carotid artery that is distended.
I was then referred to a neurologist and he ordered the brain MRI but he doesn't believe I have it as he thinks it is a muscle. He doesn't know what carotidynia really is either. The symptoms have gotten worser now as I'm now having dizziness, balance issues, and coordination issues too. I have pains around the left and right side of my head.
I agree with the ENT diagnosis as I believe and know from the symptoms I'm having that it is the carotidynia. I think I'm now having chronic symptoms of carotidynia as I been having it now for a year and the symptoms are getting worser. I also see black dots with my vision when in the dark and it is like black snow across my vision.

The ENT said that most of his patients that has had carotidynia it usually goes away. For me my symptoms are getting worser. Any suggestions on what to do or where to go for treatment for this problem? It is frustrating as the doctors I have went too don't know carotidynia and don't believe in the diagnosis as they don't see it on the tests. They don't give suggestions on where to go to get treated or recommendations on what to do. They don't have me on any medicine for this problem. I would like to have some suggestions and it helps to come to this support group and know that others are going through what I'm going through and can relate.
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Old 07-13-2017, 04:35 PM   #33
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I have been suffering from pain in the left carotid artery for around five months now. It is incredibly painful. It started when I used to check my pulse constantly due to health paranoia. One day as I was checking my pulse I noticed a fullness where my pulse is in my neck. I ignore it for six weeks before eventually going to the doctors. I didn't touch it again in that time. They felt it, although I didn't want them to, they agreed there was a swelling there and referred me to ent. Anyway, it got worse immediately after they touched it, and I had numerous doctors feeling it making it more tender each time, until after an excruciating ultrasound, which found nothing, the pain became constant and destroyed my life. I can't turn my neck, talk loudly or breathe in deeply.
Like a previous poster, ivehad pain during flights, the worst pain I've ever had. I also have ear pain and my eye is painful, it looks like it's sinking slowly into my face, and I get pain on the back left of my tongue.
Mri found nothing, but I can see that the artery is sort of more prominent. I don't think a scan is going to pick that up. It throbs when I stand up/my heart beats harder, and I can hear it in my left ear. I get migraines also and even car rides make me dizzy.
The doctors now think it's anxiety because I've had a history of that, but I am one thousand percentmsure it is not that. I feel like I'm in a nightmare. How do people walk around pain free and not realise how lucky they are. I feel such an idiot also because I brought this on myself.
I am scared that my artery is always going to be swollen or sore, I can't feel it getting better, I used to touch it a lot and I don't know what to do. I am going to beg the doctor for steroids first off, then possibly some other meds mentioned on here. Thanks for these posts, they have helped me a lot.
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Old 07-13-2017, 07:00 PM   #34
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Hi Carotidpain

Welcome to NeuroTalk .

I hope that you find the community as knowledgeable and supportive as I have.

I can't offer you any specific suggestions about your carotid pain but hope that other members will be able to.

All the best.
Knowledge is power.
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