Yes, I know your heartbeat can always be felt with your fingers in the carotid area if you press there, but I can feel my pulse inside my neck all the time, as if something inside's pressing on it. It's keeping me awake at times as I can feel it so strongly. Very uncomfortable and annoying rather than outright painful..... not sure quite how to explain that one to the doctor when I see him without seeming mad?!
I experience this as well. It is extremely frustrating especially when you are trying to concentrate, relax or go to sleep. Sleeping is the worst. I think that if you go to a good doctor who is familiar with ES they will acknowledge and understand this side effect. If they are not familiar they will make you feel like you are imagining this beating feeling.
I also get the beating in my head… it’s constant and quite annoying. I hope this helps!
Krista
Thanks krista- ggod to know others have the same. I often get the feeling in my head too; I've read that this can be a symptom of increased intra-cranial pressure as well, so it could be a vessel blocked ... Are you thinking about having surgery, what's happening with you?
I have pulsatile tinnitus so I feel the heartbeat in my ear and palatal myoclonus/middle ear myoclonus which is a pulse/tremor in my palate. You can actually see the twitch on the outside of my neck pulsing with the muscle.....
Thought I would mention since you can see my neck actually pulsing.
Thanks-I get pulsatile tinnitus too, I can feel the heartbeat ay=t the back of my throat at times, but it can't be seen in my neck.
Jules,
You’re welcome! I have heard that as well. I have bilateral ES. I had surgery in December for my left side which seemed to be way worse than the right - due to the direction of the styloid and its angling.
The surgery was successful in a lot of ways but I am still not doing well. I think it may be separate from ES though. I’m seeing a bunch of other specialists to rule a few things out. I go back to my ES Surgeon in April so I will also pick her brain and see what she thinks.
Best of luck to you! =)
Yes. I just had surgery and the styloid was pressing on carotid and jugular and I believe that was causing the visible pulsating. It was strange. My husband used to video it.
Glad you had the surgery then! Hope all's going well? Been praying that you'd be okay.
I am very familiar with this feeling and believe that the eagles is the cause of it because I no longer feel it.
If your doctor is getting mad at you because you are sharing what you are experiencing.. then you have the wrong doctor. I have no doubt your doctor is getting frustrated because they don't know what the answer is. Even if they don't know, you'd think they would want to know what ES patients are experiencing for study sake.
I loved the fact that my doctor was all open ears when it came to the wide variety of insanely sounding things I experienced. He never felt me feel bad or fearful to be honest. Your doctor should be your major source of comfort and security.
hello, it’s very curious, i was diagnoted witn es in may 2014 but i don’t really know what type i have : classic or vascular, but I feel something like beats in that side of my throat, it hurts, is a weird pain . Does anyone know about possible risks if i don’t get the surgery? asking because the Dr doen’t guarantee that i will get better , it is so what is the surgery for? i’m confused and in pain , if anyone can help , thanks
hello, it’s very curious, i was diagnoted witn es in may 2014 but i don’t really know what type i have : classic or vascular, but I feel something like beats in that side of my throat, it hurts, is a weird pain . Does anyone know about possible risks if i don’t get the surgery? asking because the Dr doen’t guarantee that i will get better , it is so what is the surgery for? i’m confused and in pain , if anyone can help , thanks
They can diagnose if ES is vascular or classic through contrast CT scans. A dye is injected into the blood stream, and then they can see if the styloids are compressing any blood vessels. My styloids were compressing the jugular veins both sides, and I could feel the pulse in my neck and throbbing in my head all the time. I had the worst side removed 7 weeks ago and feel lots better; feeling the pulse in my neck constantly and the throbbing have gone, I have no dizziness now, and the pulsatile tinnitus has lessened. I have had the symptoms back again when I tried to do a bit more exercise- I think the side not operated on is causing symptoms still.
There have been a couple of documented cases of a stroke I think where the styloid has pressed right into the carotid artery, but this is really, really rare. Styloids can also irritate nerves, and if they're left a long time then sometimes this can cause permanent damage. But there are risks of nerve damage with the surgery too. When it works, the surgery can make a huge difference to people's lives- sometimes instantly, sometimes over quite a few months. It's a personal choice, whether to have surgery or not, it depends how much pain your in. It's worth making sure your doctor knows what they're doing though, and takes off as much of the styloid as possible.
Hope this helps!
I have this. I could visably see my neck pulsing. I had 3 eagles surgeries. Anyone know what causes this? Is this a heart issue?? Idk what dr to see to help me with this?
Are you planning on doing the second surgery?
I had my 2nd surgery a year after the first one- it took a while because of the UK system & waiting list!
Oh, would you consider yourself cured from ES?
Yes! The vascular symptoms are 95% gone- I get a little bit of head pressure back if I’ve been stressed, & when I flew, but not the nasty symptoms. I do still have some nerve pain, but that’s manageable & has improved alot. I still have other neck problems so I think there’s some overlap any way. But yes, my life has improved hugely since surgery!
Hi there, I have PM and you can also see the tremor on the outside of my neck. Weee you able to find treatment for this? It’s rare so it’s been difficult to find help. It’s cause a ton of ear pain and fullness for me.
It’s been a number of years since @Christian22 last posted on our forum so you may not get an answer from him. I can tell you that we’ve had other members with PM & the tremors you describe & they have subsided after styloidectomy surgery(ies).
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