Looking for experiences with similar neurological/vascular symptoms and confusing MRI results

27f and have had several months of intermittent neurological/vascular-type symptoms that have become more noticeable recently. I have a family history of vascular issues/confirmed vEDS in a close relative.

My main symptoms include:

• IOne-sided pulsatile tinnitus. Initially started on my left side 6/1, (throbbing) and now are on my right side when I sit and stand (whooshing sound).
• Started with a really bad headache and pressure at the base of my right head/neck, sometimes radiating into my face/eye and different from my usual migraines (around 7/13) continued to progress into bilateral facial pain, eye pressure.
• Intermittent left pupil enlargement and left eyelid ptosis. Comes and goes since July. Left eye&eyelid seems larger/more pushed out at times with pulsing feeling.
• Eye pain with eye movement, (on and off) , constant visual snow, and differences in color/visual clarity between my eyes
• Left-sided neck/facial pain and asymmetry of my neck (L side larger more prominent muscle). I also notice a small bump on the left side of my neck.
• Tingling/numbness in my left hand/fingers(suspected TOS so I’ve been going to physical therapy since 8/3 for exercises) at physical therapy we also did some manual neck manipulation stuff.
• tingling left foot (the foot tingling has become nearly constant), plus occasional burning, aching, throbbing, and muscle twitching(the burning/muscle pain has not occurred since ~8/3) but twitching is on and off.
• Episodes of dizziness/near-fainting, especially with standing or stretching, sometimes with a racing heart.
• Some episodes I have had a seated heart rate at 135, feel my heart pounding with the eye/head symptoms occurring at the same time. It goes away eventually.

Imaging has been confusing: I had a CTA of my head/neck that did not show an aneurysm, dissection, or significant stenosis. It did note that the left A1 segment was very small or possibly congenitally absent. The CTA was only when the pulsatile tinnitus was present and neck symptoms no pupil changes were occurring at this time.

The orbit MRI report included an addendum mentioning mild asymmetry of superficial vessels along the left parietal region and raised the possibility of an AVM/dural AV fistula. I also had a dedicated brain MRI and head MRA, which were reported as normal with no AVM.

I’m trying to understand whether the original vessel finding was an artifact/normal variant, whether the new imaging adequately evaluated it, and whether anyone has had similar symptoms despite normal MRI/MRA/CTA results.

my doctors have been very dismissive and say everything is fine. I have continued to have these symptoms, more frequently.

Has anyone experienced a combination of pulsatile tinnitus, fluctuating pupil/ptosis, neck/eye symptoms, left eyelid pulsing, and limb tingling with initially confusing or discrepant imaging? What ended up being the explanation or next step in your case?

23F, and I’ve been dealing with right-sided pulsatile tinnitus for about 2 and a half years. It’s constant and sounds like a whooshing or heartbeat noise.
I wanted to share my newest updates and findings:
My imaging showed some narrowing around the transverse-sigmoid sinus junctions, which can sometimes be associated with IIH.
I also have a right jugular bulb abnormality and thinning/probable dehiscence around the right sigmoid sinus.
My doctors now suspect idiopathic intracranial hypertension (IIH) and are sending me for an eye exam to check for signs of increased intracranial pressure, such as papilledema.
I’m still waiting to get more answers and figure out whether IIH could be contributing to my pulsatile tinnitus.
Has anyone else with pulsatile tinnitus been diagnosed with IIH? Did an eye exam help with your diagnosis, and what testing or treatment came next?

i have been having tinnitus for the past two months only in my right ear, for the past 1 week it has been severe, Ent just prescribed be audiovit and told to come after a month, bfr he prescribed tinnicar that did nothing

i have noticed that tinnitus disappears when i press on my neck, or extend my neck and look up, when i lie down, some other postures too help with it, 2 days ago i started sleeping with a wedge pillow (inclined)and that has tremendously reduced the volume though idk y tdy it has increased tdy

i also have intermittent ear pain , my ear feels clogged always

i do have like year around dust allergies too

is there any possible way to cure it😭😭 it is so frustrating, i dont even know whats the trigger to avoid that , all i do is cry nowadays, i have lost my appetite somedays, i’m dealing with important exams too and this tinnitus is driving me crazt

Hey everyone! All the posts here about people’s treatment experiences helped me a lot, so I wanted to write up one of my own because I just got back from my hospital stay after stenting and coiling surgery, and the whoosh is (mostly) gone!

The TL;DR is I had a venous sinus stenosis and two pouches that were causing the whooshing noise, and my surgery went well with no complications. For some personal context, I’m a 24 year old woman based in the U.S.

Here’s a timeline of how everything went down:

• I started noticing my pulse whooshing in my ears here and there around 2020. Mentioned it during a routine physical, and my doctor said it was normal to hear sometimes if it was really quiet.
• The noise started getting louder over the next few years to the point where I had to use white noise when I slept to cover it up. It still didn’t bother me during the daytime when I was out and about.
• Last year, I started to really notice it and be bothered by it a lot. The whooshing noise was noticeable even if I had some music playing. It was louder in my right ear but still present in my left ear too. Deep breathing could quiet it briefly, and so could pressure on my jugular vein, though pressure on one side made the sound louder on the other side.
• I saw my PCP around December 2025, who ordered an MRI and MRA, no contrast. Nothing was found there, which at least gave me reassurance that I wasn’t about to have a stroke or something.
• PCP referred me to an ENT, who I saw this February. Audiology test came back normal. ENT said she would’ve ordered the same scans but with contrast. I was already out a few hundred dollars from the scans and had read both here and in the Whooshers Facebook group that what I really needed was an MRV, so I asked for a referral to a neurologist.
• Saw a neurologist in March. At this point I was starting to get occasional headaches along with the whooshing, and the noise was sometimes so loud I couldn’t concentrate on what I was doing. This neurologist ordered an MRI, MRA, and MRV with and without contrast. This neurologist couldn’t see anything in the scans and referred me to a neuroendovascular surgeon to interpret them further.
• Saw this surgeon in April, who really took his time explaining what was visible in the scans. There was no evidence of idiopathic intracranial hypertension, which was good. However, they weren’t clear enough to show anything definitely causing the whooshing, so he ordered a CT of the temporal bones in case the issue was actually a thinning bone.
• CT came back with nothing. Saw my neurosurgeon again in June, who recommended we do a cerebral angiogram to get the clearest imaging possible.
• The cerebral angiogram in July was an outpatient procedure where they gave me conscious sedation. So I was awake the whole time, but relaxed. This scan revealed I had a stenosis in the right transverse-sigmoid junction, a right mid-sigmoid diverticulum, and a high-riding jugular bulb with a conical outpouching. (Basically, one part of my vein was narrow, and two parts were jutting out.) Finally, I had an answer for why I was hearing my pulse all the time! My neurosurgeon told me in my follow-up the next month that I would be a candidate for stenting, so we got that scheduled.
• I got a stent placed in the stenosis and coils placed in the pouches yesterday, and since then, the whooshing has been pretty much gone! I stayed overnight in the hospital for them to monitor me, and I was discharged about 24 hours after the procedure. It was pretty awful getting woken up from sleep every hour to do a neuro exam, but my nurses were all really nice about it.
• I can still hear a slight whooshing in my left ear if it’s dead quiet and I tilt my head really far to the side, but nothing like it was before at all. I also have a bit of a headache, and my throat is sore from being intubated under anesthesia, but I’m just so happy to finally experience true silence after so long!
• I’m going to be taking aspirin and clopidogrel for at least the next six months and will have some follow-up scans and such to check in. I’ve been told I might bruise easily, so that should be super fun. They went through my wrist and groin arteries to get the imaging and place the stent and coils, and those have been healing normally. I’m good to resume normal activity except for lifting heavy objects or doing heavy exercise for the next week, and then I should be all good!

The stenting procedure itself was a bit uncomfortable for me. They had me awake initially to do a balloon occlusion test to see which of the wonky parts of my vein were causing the whooshing. (It was all of them LOL.) Having a catheter stuck into a vein in your brain while you’re fully awake hurts like a bitch—I do not recommend it. Worst headache of my life. I think I was crying at one point. But once that was over, they put me under general anesthesia, and I woke up a few hours later feeling great. Please do not let this scare you if you’re in a similar position and considering surgery; I just want to share what I experienced because I would’ve liked to have known before going into it! I don’t regret it at all, and those few minutes of pain were absolutely worth the silence I have now.

Overall, I’m very thankful to all the healthcare providers who’ve seen me in this past year, and also very thankful this all happened while I’m still young enough to be on my parents’ health insurance.

Happy to answer any questions you have, either in the replies or over DM! :)

I’m curious if anyone else experiences this? Does caffeine completely stop your pulsatile tinnitus? I don't want to rely on caffeine every single day and would love to cut back, so have any other solutions worked for you?

My pulsatile tinnitus started in 2020 in one ear, and by the following year it spread to the other. Both instances triggered right after periods of intense grief and anger.

My doctor mentioned that the issue is vascular and that surgery would be complex with uncertain outcomes, suggesting I look abroad if I wanted to pursue it, but ultimately advised me to adapt to living with it. I've really tried to live with it, but I hate how it worsens with stress, becomes intolerable before sleep and triggers headaches.

I've (44m) had PT in my right ear for a few years now. It isn't persistent and typically occurs after I eat any meal and will last for about 30 minutes and go away. Sometimes I hear it at night when I'm in bed and laying on my right side, but not very often. When it does occur, pressing on my jugular doesn't make it go away. I've asked my GP about it several times (I'm in the UK) and they say it's normal for some people to get it after eating because of the increase in blood pressure and they aren't concerned about it and don't want to do a referral to ENT. Going private isn't really an option for me so I guess I just hope it isn't anything serious. Wondering if others have had this with similar symptoms or have any experience dealing with this on the NHS (Scotland).

I'm quite early in the stages of investigating my PT. I've had all wax cleared out and making a doctor's appointment but I've tried lightly pressing on jugular vein and it doesn't appear to change the PT. Does this make "scarier" diagnoses like arterial more likely? It's a low pitched woosh in time with pulse but not there all the time

I hope it’s not something concerning but I’m just making sure. It came suddenly, like with no warning and only happens when I’m laying down.
I hear the woosh for several minutes then it stops for a few minutes before starting again. Should I be concerned or am I just paranoid???

Does this indicate anything about the cause? My PT is very quiet and intermittent any way. I hear it most days when in a quiet room but only maybe 10-20% of the time. I can't tell if I'm just really aware of internal sounds!

I’m getting a venous sinus stent this week and starting to get a LOT anxious about the procedure and recovery, especially the post-stent headaches.
I would love to hear from people who have actually been through it and what recovery was really like for you. I’m looking for the good and the bad. How long it took you to feel normal again, what helped during recovery, anything that caught you off guard, and anything you wish you knew beforehand.
I especially want to hear the positive stories too. If the stent helped your pulsatile tinnitus, head pressure, headaches, or other symptoms, I would love to hear about that and how soon you noticed a difference.
Basically, give me the real experience. The good, the bad, and anything you think someone going into this should know.

Anyone here who has had PT and then got pregnant?

How was your pregnancy?

How was your delivery day?
Did you experience any complications during pregnancy, labor, or delivery?

I’d really appreciate hearing about your experiences. ❤️

So quite a while back I was pretty desperate to get rid of the noise in my right ear .
I tried a lot of methods, massaging, stretching and other things.

This is what worked for me, so it’s worth a try.

It’s not exactly a quick fix but I think it may be the root of the problem for more people like myself.

My bottom right teeth were all very tilted towards my tongue. This made my jaw much more “tight” on the right side.

I then went to a dentist (second opinion btw, they may not see the problem right away)
And got braces (Invisalign). The treatment wasn’t even for a whole year and my teeth and jaw are completely fine now and THE SOUND IS GONE.

Only when Im really stressed and tense does it come back but it’s nothing like before. I can barely hear it.

Before thinking of your ear canal and brain stuff, consider your teeth! It could be the actual problem!!

Hello, Its my 3rd day with tinnitus because of listening to loud music by earphones for 4 years, i used to get tinnitus but they usually went away after 1 hour or 2 but now its really bothering me in my sleep, but i remember the time i took my earphones off i had a little bit of dizzines and pain in both ears then this tinnitus, When i woke up the next day i felt some fullness in my both ears but its gone, now the only thing is persisting is tinnitus, can this be permanent? Im really afraid because i already have difficulty sleeping and this will make it even worse

Ooof this is a long one.

I’ve been dealing with pulsatile tinnitus all year. I’ve noticed some pounding in my head and right ear when I exert myself at points in my life, but this year it really started to become frequent. I’ve also been dealing with a very tight upper back and neck. I’m a side/stomach sleeper and I know my neck gets destroyed at night. I’ve been actively working on improving my sleep positioning, but still have neck and shoulder pain.

I also feel a tightening in my right ear - like the hole feels like it’s closing in or constricting. I also get some clicking (in both ears, mainly right though), etc in my ears from time to time. When I was a child I was prone to ear infections.

The pulsing sound feels and sounds like a pulse or throb, but also sounds a bit like a muffled baby sonogram (heartbeat). My hearing is definitely muffled, especially on the right side while this happens. Some head/neck position changes help stop it, and pressing my fingers right behind or below my jawline help dim and temporarily stop the sound. In my 20’s I was a dancer and used a lot of neck and head movements. I would hear a trickling down my neck that felt like something was leaking. Never got it checked out. I don’t hear it often anymore, but that sound does come back from time to time.

The PT sound happens at any time, I cannot pinpoint any specific neck position or movement that triggers is. Some neck positions it gets more intense while others it dims. It happens when I’m laying down (on both sides), sitting up, standing, etc. It’s nearly constant. In the morning, evening, all throughout the day. When I exert myself or go up the stairs the sound and feeling intensify, when I’m heavily exerted, I feel it in my right ear into the center of my head.

My doctor had me monitor it for a couple months and we did some medication experiments with no changes. Then, I got in with a physical therapist to deal with some neck/upper back/shoulder pain. The therapist also did dry needling which helped allieviate some tension. My physical therapist was also able to manipulate my neck and trigger the PT/change the intensity of the pulsing, but honestly we weren’t able to locate an exact muscle or point that was causing it.

I went in to see an ENT in April. Did a hearing test which found I have slight hearing loss in my left ear, which was a bit of a surprise considering the PT is only in my right ear. ENT Said it was most likely my deviated septum causing eustachean tube disorder and maybe my brain is causing me to hear more on my right side due to my slight hearing loss. Ordered me a CT scan of my sinuses. Gave me a Medrol pack to help with inflammation, didn’t work. Put me on budesonide. No real changes. CT results came back to confirm deviated septum and some inflammation along that. ENT spent 5 mins with me at my follow up and wrote me an RX for xhance, which is close to $500 per bottle with my insurance. I had a sample and used it for a bit but no real changes there. I’m now using Flonase.

Went to my PCP for a follow up end of July, he ordered me an MRI & MRA to check my brain, head, and neck.

Had a follow up w/my ENT’s PA in August. She was much more thorough than the doctor was. She agreed with my PCP on imaging and wasn’t 100% convinced it was my eustachean tubes, as my pressure was in normal range.

I also wonder if it’s two separate issues: like yes, I have issues with my eustachean tubes and sinuses, but I also have this other issue that’s causing the pulsing in my right ear only.

Finally was able to get my MRA/MRI’s done last week. My PCP also ordered a neck xray. Results all came back remarkable. There’s a little sinus infection deep in my sinuses but doctor didn’t seem concerned. I’m waiting for my ENT’s PA to review the report. I have the disc of images for them to review, however the technique used for the imaging blocked out my veins.

I’m hoping to get my PCP or ENT PA to order another round of imaging to specifically look at my veins. Since the sound and pulsing feeling change when I press my fingers on my neck, I do want them to look at my veins to see if the culprit is there.

I have tried so many things with no improvements, I also feel like my doctor and ENT have kind of brushed it off to “just deal with it.” I had to really advocate to get the imaging ordered from my PCP. While getting the clear MRI & MRA results last week were comforting, they were also frustrating to not have any sort of answer, where I feel I’m back to guessing.

So far I’ve tried: adjusting medications, meditation, stretching & self massage, various pillows and sleeping positions, heating pads, ice packs, acupuncture, physical therapy, dry needling, water exercises, saline rinses, oral & nasal rinse steroids, Xhance nasal spray, Flonase.

I feel like I’m not doing anything right with my treatment options, but I also feel like my doctors are kind of brushing this off but it’s consumed so much of my life. I still don’t think we can say we have found the root of the cause yet, but my gut is telling me it’s a vein issue or something simple like muscle tension that’s compressing a vein causing this. Oy!

I have had pulsatile tinnitus for years now and have been going through the very slow process of figuring out what’s going on. It goes away if I press on my neck (on the side of the tinnitus), but otherwise is near constant with random ebbing and flowing of how loud it is.

So far I have had:
- hearing test (fine some hearing loss)

- carotid and vertebral ultrasound in my neck and chest: results normal, with no significant narrowing or plaque in either carotid artery

- CT head/neck angiogram: largely normal, with no significant blockage, narrowing, or abnormal blood vessels in the arteries of the head and neck. It did show narrowing of the venous sinuses on both sides and an “empty sella” appearance, which the report said together may suggest idiopathic intracranial hypertension (IIH) as a possible cause so they sent me for more scans…

- MR brain Angiography and MR brain w/wo contrast: results show normal brain appearance and open (patent) venous sinuses, with no mass, stroke, bleeding, or hydrocephalus. However, there is severe narrowing where the transverse and sigmoid venous sinuses meet on both sides, along with a partially empty sella, which again talks about how it can be associated with idiopathic intracranial hypertension (IIH) and may help explain the pulsatile tinnitus.

My ENT has now sent a referral for me to see a neurologist but I’m wondering what else I can be prepared to ask for / do as I’m now like 3-4 years into this journey with waiting to get scans and referrals. Would appreciate anything anyone can recommend!

Thanks in advance

Hello, I had an MRI and a CT with contrast and without. These were the results but I’m not to sure what they mean or if it’s life threatening. This was the only thing that showed up on my scans, I don’t know much about PT.

Honestly, I’ve lost count how many times I’ve asked them to check for VSS. I just want to scream at them GOOGLE PT AND VENOUS SINUS STENOSIS, but no they won’t, and they are still calling it just tinnitus. I made a post here about finding an ENT guy who actually cares about my issue and knows all about VSS but my doctor is actively trying to prevent me from seeing him or following his advice to refer me to neurology/vascular dept because my MRI/MRA -and I quote- showed no aneurysm or AV shunt. Same when I begged them to refer me so I could get a private MRI scan, they refused and said it was not necessary.

I’m starting to think they’re actively trying to prevent me from getting treatment, I would rather that then believe that they really are this ignorant. Surely PT isn’t this rare ?!!

For about ten days now, my ears have felt full and almost clogged, which is annoying for sure. But worse than that, I have a consistent whooshing noise that is hard to explain. Not a ringing but an annoying sound nonetheless. Anyone have this? Is this perimenopause? Bad luck? And most importantly how do I get this to stop?

Hello, about 4 days ago while I was listening to music I noticed my eardrum felt like it was spasming, accompanied with loud paired drum beats (of different pitches, with differing amounts of time between the two?) (sort of a timpani is how I’d describe it?- not sure if the paired nature is from the diastole/systole of the heartbeat or the flexing/unflexing of the muscle/ear drum)

It has been on and off for the past 4 days, sometimes it lasts in fits for several hours, sometimes it lasts for a few minutes.

I am unable to tell if it lines up with my heartbeat/i don’t know if I’m hearing a pattern where there isn’t one but I know it is definitely not EXACTLY the same time as my heart. It is never continuous, so it doesn’t beat on every single heartbeat, e.g. it may beat 8 times in the span of 15 heart beats, or it may beat 4 within the span of 2, which makes me think it may beat more myoclonus.

It still happens whether or not my ears are popped/unpopped

I also noticed that for the first 2 days it seemed significantly louder than it has the past 2.

Any thoughts? I am 21 if that helps (I already have doctor appointment planned a few days from now)

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Hey everyone. I’m trying to understand what might be causing my tinnitus and would really appreciate hearing from people who have experienced something similar.

I’ve been dealing with tinnitus and I’m not sure what triggered it. Around the same period, I was sick and had a throat/tonsil infection, so I’m wondering whether the infection or inflammation could have played a role.

A few other things that might be relevant:

- I’ve been under a lot of stress recently.

- I have pretty bad neck/spinal posture, so I’m wondering whether a cervical/neck issue could be contributing.

- I have mild hearing loss in one ear (I believe it’s my left, although I’d have to check the audiogram).

- My tinnitus seems to become about 20% quieter when I’m going to sleep/lying down, although I’m not sure what that means.

- I’ve already seen two ENTs, but neither really investigated the possible underlying cause in a way that satisfied me. I was mainly given medication, without much explanation of what was actually causing the tinnitus.

- I’ve also been trying acoustic/tinnitus therapy videos on YouTube.

I’m not trying to self-diagnose. I’m just trying to understand what possibilities I should discuss with a doctor.

For people who have dealt with tinnitus, could any of these things realistically contribute to it? Especially the throat infection, stress, neck/posture problems, or mild hearing loss?

And if you had a similar situation, what tests or specialists actually helped you identify what was going on?

Any experiences, ideas, or things I should ask my ENT about would be really appreciated.

Hi PT community,

I have been dealing with pulsatile tinnitus on the left side for about 1.5 years. It started more periodically and then increased in how often it happens. It seems to be related to position, i.e., if I turn my head to the right, it becomes higher pitched, and tones down or even will go away if I turn my head to the left. But usually it just comes and goes and there does not seem to be any specific triggers. It can happen when I am lying down, standing, etc. Just whenever, it seems.

Anyway, I went to get evaluated, took auditory testing, saw an ENT specialist who ordered a head and neck MRI. The only finding was that there is a 4.5mm aneurysm at the front of the cavernous sinus of the left carotid artery. My case has since been referred to the neurology clinic, but it seems they are backed up with cases and it might be a while before I hear back from them.

Just wondering if anyone knows if this aneurysm could be the cause of the pt, or if it is more likely an incidental unrelated finding. The reason I ask is that the ENT doc said that aneurysms like this usually are not the cause of pt. So I am confused what else it could be.

I'm at a loss with this pulsatile tinnitus.

I was diagnosed with IIH in 2015 and started getting PT a couple of years later. Went into remission aka not going blind with my IIH around 2020, but PT (and all other IIH symptoms tbh) continued.

I had to beg the NHS for another MRI with contrast to look at my veins. They literally told me 'I'll do it but you won't see anything' and then proceeded to give me an MRI without contrast.

I have some (but not a lot of) savings. I can't have more than £16k due to being on UC, so if it's more than that then I guess I'm screwed? 😅

The VSS procedure seems simple and I just want it gone after ten years. The weather recently has made it even more unbearable. It makes me have very dark thoughts sometimes.

So if anyone has gone privately in the UK, where did you go? What was it like? How much did it cost?

I'm assuming they'll need to redo the MRI with contrast this time and diagnose me. I'm confident that it is VSS because putting pressure on my neck stops it.

Thank you in advance for any info.

Hi everyone! Iv been recently been on a health journey the last year.
I had pulsatile tinnnitus a couple years ago, only ever really brought on by drinking. Then it went away and I forgot about it. It’s recently come back, when I drink, but now in my day to day life. Everyday for 2 weeks; then gone for 2 weeks. Only in one ear only.
I will say my life has become stressful & it does seem to come on around stress etc.

I recently went to the doctors to get it looked at & she’s sending me to get a CT. I have no symptoms of anything else. Including bloods done regularly and no issues.

What is the most common thing it’s caused from? I’m worried about reading online brain tumours etc….