I just wanted to ask whether any of you or anyone else out there have experienced some of my stranger symptoms as I’m trying to work out if they relate to my jugular vein compression or my brachiocephalic vein compression. Hopefully I will get surgery at the end of March to relieve jugular vein compression but I want to be prepared so I don’t spiral downwards if I don’t get symptomatic relief!
Does anyone have or had any of these and did the surgery work?
A feeling of pressure and pulling up inside the head, behind the throat just off centre, level with but further in from the jugular vein. Seems to be wrong position for styloid. Feels like a very tight muscle that needs stretching.
An internal, juddering tremor that at its worst makes my whole body rattle, my teeth chatter and my eyelids flutter. At best gives right hand tremor.
Chest pain. (my heart has been checked)
Generalised aches and pains. @Dontgiveup some of the above from what you have written.
Severe facial flushing.
Random very sharp pain in hand - almost like my brain has forgotten how far the joint can extend and almost dislocates (sounds weird I know).
Almost whirring, zapping in head as if someone is merrily in there with a cattle prod!
Dragging of face and neck - hemifacial spasm - that pulls and distorts your face and neck (very attractive - but hey - who cares? Least of my worries!)
Random facial twitching
Clunking in centre of head when walking…
Bloating and excessive thirst.
Pain and swelling in leg (I’m thinking might be pressure on right side of brain from right jugular as it’s the left leg).
Noticeable increase in symptoms when raising arms? Really interested in this one.
Also did any of you find yourself being selective with your symptoms when telling doctors in case they thought you were crazy?
Many thanks all. Any feedback really appreciated.
Did you want to post this on the main forum or did you want to keep it as a private message?
Definitely a good idea to focus on the main symptoms when you see any doctors, the well known ones, or it could scare them off!
Pressure on the facial nerve could well cause the hemifacial spasm, & the facial twitching…Vagus nerve irritation/ compression can cause breathlessness, heart rate issues, & it supplies visceral sensation information for the heart, so maybe that could cause chest pain? Irritation of the trigeminal nerve could perhaps cause the zapping in your head…
I’m guessing that it could be hard to tell whether some of the symptoms are from jugular vein compression or brachiocephalic vein compression, sometimes you just have to have the surgery & see what improves…
Hopefully @KoolDude with the anatomy knowledge might have an insight!
Wanted to post on main forum Jules - my brain doesn’t work!
No worries, I’ll open it up!
Send me a PE, if you like to. I know what you’re talking about…
What’s a PE @Eaglefatigue. Sorry bit of a dope at the moment.
Hope a PE means personal email and this is the place to reply! Many thanks
@Jules I really think you are right. Sometime it is just trail and error thing but I do think that the venous reflex from brachiocephalic vein compression is significant but also might need to rule out any subclavian artery issues since that can also contribute to IIH as well. @Eaglefatigue know the author of that study KJETIL LARSEN and help you communicate with him.
I do have many symptoms as @DogLover but I do not have issues when I raise my arm. As far as surgery is concerned, I leave it to the folks who went through it.
kkk…I am laughing because I did this many times.
Yes!!! Very good point! But it’s just so… exhausting…
Hi…I’m new here & hope I’m replying correctly! Anyway, with regard to the leg swelling, have you been checked for May Thurner syndrome? It’s another venous compression condition that affects the iliac vein. I’m by no means an expert, just wanted to mention that. I have so many weird symptoms myself, it’s so difficult to know what’s causing it all.
Hi & welcome to the site!
Good suggestion, I think someone has been diagnosed with that as well as ES if I remember right!
@emlklg444 welcome I hope you will benefit from joining this site as we all benefited here and owe it to some degree our final diagnoses. The point you raised is important and one @DogLover should investigate it further as clots usually form in veins located at the lower parts of the body than upper parts of the body. This is due to the fact that blood pools in the lower extremities and slowly move up. This causes condition known as stasis (slow flow) and is linked to clot formation as the platelets in the blood start to stick together when they are not moving. You hear Deep Vein Thromboses (DVT) risks specially when you sit for long time in an airplane this is due to blood pooling on the legs so that is why one is encouraged to move the legs or flex the calf muscles to compress the veins and keep the blood from stasis condition. This is also how the compression socks work. When you compress a vein, you increase the speed of the blood hence no chance for the clotting to form due to reduced stasis. That is why exercise, among many things, is good for the circulation system because it keeps the blood moving.
Welcome! I’m glad you posted. We would love to know your ES story. You can start a new post by clicking on the green circle w/ the white butterfly in it in the upper right of this page. That will take you to our home page, & on the bottom right of that page, there should be a blue circle w/ a white + in it. Click on that to start a new discussion.
Thanks for your reply and no I haven’t been checked for May Thurner syndrome and it will be next on my list if the leg issues persist after the surgery. I’ve looked into it before as it’s one of the areas that was treated for the now vilified CCSVI (Chronic Cerebrospinal Venous Insufficiency) which was linked to Multiple Sclerosis. The treatments were basically ballooning and sometimes stenting and were deemed unsafe and unproven (as opposed to pumping the body with drugs) and have been pretty much banned across Europe, the US and Canada. God help those who have MS and venous obstruction as I suspect it’s almost impossible to get treatment.
I’ve gone off topic again! Thanks again & what are your weird symptoms by the way if you don’t mind sharing?
Off topic is OK because the info you shared is relevant info for this thread & good for us to know because so many of our members have more than one thing going on in their bodies.
@DogLover - Any luck with a diagnosis?