Does anyone experience their eyes/vision to pulse with eagles or jugular vein compression? Tia
Yes I have vision problems, blurred and sometimes eyes won’t open as quickly after sleeping on the right side where my styloid is longest. Some days have to wear reading glasses, other days I don’t.
That’s a bit worrying! Pulsatille tinnitus is quite common, I had that with bilateral jugular compression, loads better after surgery!
Have you had your eye pressures checked by an optician? In very rare cases of high Intracranial pressure it can put pressure on the optic nerve & damage it, so best to get checked…
If you were able to get a referral to Mr Axon at Addenbrooks, he is very knowledgeable about IH & jugular compression, he’s also done lots of research into pulsatile tinnitus if you do get that as well.
Thank you. I am going to make an appointment with dr Axon.
I get the whooshing in my ears when leaning over or kneeling to standing.
I’ve just had an mrv and awaiting the results. In my mri you can see my c1 compressing my jugular vein but I don’t know if it’s significant enough. I don’t know if the styloids are involved.
I have so many awful symptoms including clear fluid leaking from my nose, blocked popping ears, tinnitus, derealisation, brain pulling and sucking pressure. Pulling and sucking of the eyes and pulsing vision at times. Visual disturbances. I have more but won’t bore you lol x
A CT would show the styloids better; your scan obvs shows jugular compression, & could well be compressed between the C1 process & styloid- that has been seen with other members- but whether it’s due to elongated C1 process or an elongated styloid process, or both, can’t be seen. Have you ever had a CT? If you haven’t I would wait to see Mr Axon as he likes CTs done his own way, & you don’t want to have more radiation than necessary.
If it’s not due to the styloids but an elongated C1 process, he would be able to refer you to another specialist at Addenbrooks.
It does sound as if you have Intracranial Hypertension- have you has your pressure measured? I know how rough I felt, & your symptoms sound worse than mine! Mr Axon had considered getting the fluid drained with me initially but decided getting the styloids out would be more helpful, which I was glad about; I don’t know if that would be helpful while you’re waiting to see Mr Axon? Have you seen anyone about the IH symptoms, you don’t want to have permanent damage to your optic nerve?
I feel for you, like I say, I know how rough I felt…hope that you can get some treatment soon
Hi Natty04 -
If the clear fluid leaking out of your nose isn’t typical nasal mucus, there is a possibility you have a CSF leak. That could be caused by high IH. Getting treatment soon does seem fairly urgent. I hope you’re able to get the testing done soon that Jules has mentioned.
Did you have surgery? Curious if your pulsing vision went away. I also have this. I can see my pulse in my peripheral vision if I defocus my eyes. More pronounced with an elevated heart rate. This started around two years ago when my pulsatile tinnitus started.
I have bilateral IJVS. Pulsatile tinnitus. I also have regular tinnitus, visual snow, but I feel that the visual snow has gotten worse in the last two years.
For anyone with eye issues from IJV compression, please do go and get your eyes checked for pressure & use Amsler grid (available o line) to regularly check you can see the grid lines ok.
I had eye symptoms too- sense of pressure, blood trapped in dark shadows under eyes after sleep, temp vision loss & eye watering. Also Kalidescope vision issues in Sept.
In July had to have emergency eye surgery as retina detaching & this week has another surgery to sort cataract that grew as result of surgery. Would have lost sight in left eye if not caught it in time.
May be unrelated to IJV/IHH but tbh I think it is connected. D
@MattD - @Natty04 hasn’t posted in a couple of years so if you don’t hear back from her don’t be discouraged. Many of our members move on once they have ES surgery & are feeling better.
Poor you, another surgery! I hope that you heal well, good advice about getting the vision symptoms checked.
@PatientD - I’m glad they caught your newly developed cataract in time to save your vision. That’s great news!! I do agree w/ Jules that it’s a shame you’ve had to have another surgery this year. When I was in my 40s my vitreous humor decided to partially detach from the retinas in both of my eyes, but I was fortunate that my retinas didn’t tear/detach in the process. I know others who went through the same thing but had to have retina surgery. I’m sorry this happened to you. There could be a connection to IJV/IIH as you suggested.
Thank you, you are both very kind. Eye emergency has been an unwelcome surprise in a difficult year. At least I avoided losing my eyesight. D
I don’t visit this group much but the members are so kind and helpful.
Sorry to hear of your struggles and I still do experience those.
So I explored the ijv compression and eagles syndrome. I ended up having a catheter venogram with ijv ballooning. I had only very subtle gradients and ballooning unfortunately didn’t bring me any temporary symptom relief. So I went back to the csf leak drawing board and further imaging has discovered a spinal csf leak, potentially from a calcified herniated bone/disc. So I believe my pressure issues are in fact from a spinal csf leak, especially as I had an obrupt onset. I was absolutely fine the day before.
I hope you get some answers and correct treatment for your symptoms
Hi @Natty04, so sorry that you’re not really any further forward with resolving your symptoms! We have had a member had stents before which haven’t helped long term because the compression is still there from the styloids, so it’s not really surprising that the ballooning didn’t really help if there’s still some compression. But understandable that you want to explore the CSF leak, I hope that you can get some treatment for that. Thinking of you
I get a kaleidoscoping black/white grainy overlay sometimes. It’s totally distinct from a migraine aura (pretty much never precedes a headache & looks different). Then there’s what looks like a TV static filter over everything. I do get a pulsating thing going on sometimes too.
I’m not diagnosed yet, waiting to get more opinions and angiography done, but it looks like I probably have some kinda JV compression. Guessing it’s related.
Edit: Whoops, I didn’t realize your initial post was from 2yrs ago!
I hope if the spinal calcification/csf leak are dealt with your miserable symptoms will go away for good. I’m so sorry you’re still struggling w/ symptoms. Was ES ever confirmed for you or were your styloids found to be normal?
I experience a lot of visual disturbances (constant, but much worse when my IH is high). I see a lot of afterimages - like the kind you get after staring at a light for awhile, except with everyday objects. I thought it was double vision - but it’s really the afterimage I’m seeing. Also have alot of “snow”, and everything kind of dances around.
When my IH is high - I do notice a pulsing quality to the “dancing” - I have trouble explaining it. (to answer your actual question). the visual disturbances were one of the first sensory symptoms I experienced with IJV
IH and eye symptoms -please do get your eye pressures checked at opthomologist to ensure pressure not too high. Also check you do not have tunnel vision or papilledema as iH can cause this and it needs urgent treatment to prevent blindness. D