r/PulsatileTinnitus

I (31F) was diagnosed in February of 2019 with visual disturbances, pulsatile tinnitus, debilitating pressure headaches that radiated down my neck and back, and paplidima. I had an LP opening pressure of 22. MRI was normal.

I was initially put on Topiramate and diamox. I couldn't tolerate diamox so I was switched to furosemide and stayed on both medications until I lost 10% of my body weight. Once I did that I was considered in "remission" and taken off the meds completely.

5 months later I had my symptoms come back but had since moved across the country. I had not gained the weight back, but the meds seemed to be keeping everything at bay. I was not given the option of meds again and was told to just lose more weight. Something had to be going on under the surface but I was dismissed.

Over the years I have been getting cyclical flairs around fire and monsoon season here. These had been getting progressively worse and spanning more time out of the year that I was out of commission. This year things happened very fast.

I went in for an eye exam and a change in my migraine meds. I was told my paplidima was severe and I needed to go back on Topiramate and get another LP. Opening pressure was 36 so they drained a good amount. While I was getting my LP the surgeon mentioned Venous Sinus Stenosis and I should get an MRV with contrast. The radiologist said my MRV was normal (congenitally small left side) but my doctor disagreed. As my vision was deteriorating quickly and my headaches were getting worse we decided to do an angiogram 4 days later. The angiogram showed a 16mmHg gradient, so they admitted me and I got a stent the next morning.

I can answer any questions you have about the process or healing after (I'm still in the midst of that). If you're in the Southern Arizona area, look up Dr. Fahad Laghari at Corondolet Medical. He is outstanding.

Just struggling between ENT and Neuro for my IIH. I had a lumbar puncture last week with opening pressure 17, and struggling with low pressure headache after two days by that time my Pulsatile tinnitus was not there. For few days it is like I have either one of them pulsatile tinnitus or low pressure headache. Currently taking 750 mg acetazolamide. For my pulsatile tinnitus neuro says check with ENT and ENT says check with neuro. Does anyone have pulsatile tinnitus even after remission?

Hi fellow whooshers!

I first noticed my PT in March. I have had it everyday since, not all day but everyday. It changes with head position, goes away with neck compression, and impacts my sleep to an extent.

I first had a CT which showed sigmoid sinus dehiscence and diverticulum. I then got at MRV which confirmed what the CT showed, but also showed stenosis before the diverticulum. My neurotologist referred me to an interventional neurologist who is going to perform a venogram to determine whether or not the vein needs stented. If it does, I will get stented before having bone resurfacing surgery.

I am looking for advice/tips/recommendations as I am preparing for the venogram, potential stent, and potential bone resurfacing. Thanks everyone!!!

I am a 45 years old female and I have had pulsatile tinnitus for over 1 year now. It’s left sided and head positional and stops with jugular compression.
I have had an MRI, MRA and MRV TOF, a Doppler scan, a standard CT scan and most recently a CT Venogram. I have also had an iron infusion and a fundus eye exam. I have had to pay for all this privately.

I have paid Dr Jeremy Lynch a consultant Interventional Neuro radiologist for a second option. The first time was back in November when he checked my MRIs. He thought he saw signs of IIH as I had a kink in my right optic nerve, flattening of the backs of the eyes and an empty sella.

So he has just checked my CT Venogram and this is all he said -

I have reviewed your CT venogram and agree with the reporting radiologist’s findings.
 
In particular, I can see no evidence of venous sinus stenosis.
 
Please do not hesitate to contact me if you have any further questions.
 
Kind regards,
 
Dr J Lynch
Consultant Interventional Neuroradiologist

So I literally feel like I have exhausted all scans, I have seen numerous different consultants and there seems to be no cause.

Is there anyone else out there that has been through the same situation where no cause is found constantly or can anyone maybe suggest what I could do next to try and find out what’s causing it?

Thankyou 🙏

Hi everyone.
F25 years old.

So my PT started a few months ago and was mostly present in the right ear but with episodes in the left as well. About 2 months ago I discovered that i have ferritin and b12 deficiencies and after starting supplementing, my PT is basically gone. I can only remember a few times when i heard it after supplementing and it was much more quiet and less intense, lasting only for seconds.

What are your stories? Is there someone whose PT was connected to deficiencies? I’m looking for advice because I don’t want to dismiss a symptom but I also don’t want to excessively focus on something that is basically gone now. (I’m very anxious about my health)

I got regular T about 2.5 years ago and I noticed soon after that I could hear my heartbeat in my left ear only, and my regular T is mainly in my right ear only. I noticed the wooshing of my heartbeat in my left ear while pooping or if I had a head rush. Nothing too bothersome. Fast forward to about 1 week ago I noticed I could hear the wooshing at night while sitting on my bed. And no this isn’t because it’s quiet at night, I work from home a lot and I sit on my bed often all day working and never hear it, but lately sometimes. When I lay down it goes away, and goes away when I press my neck. Sometimes in the AM I will hear it too once I sit up. I have a vein CT scan coming up because I saw an ENT about it last week. I’m hoping it’s not stenosis or a brain tumor but who knows.

I also suffer from terrible allergies. I’m allergic to most animals and we recently got a dog.

Im trying to figure out what this could be but it’s terrible because I already have to deal with regular T and hypercaucis. I also have visual snow syndrome.. which all started around the same time 2.5 years ago.

Well I'm basically at 136 days post-op.

The PT did gradually vanish and it has become quite rare now.

However, now I'm having a continuous low venous hum on the opposite side. It varies throughout the day. I'm wondering if this is caused by the surgery... I'm unsure which is the most annoying ; the initial PT or this continuous low pitched venous humming...

It started about 3 months after surgery.

F me.

Hey everyone,

I have had PT for almost 3 years (right ear, 24/7, would stop when pressing on my neck) and finally after looking through the posts here i found an interventional neuroradiologist. I have had my stent placed 2 days ago and immediately woke up PT free. I just wanted to say thank you to everyone who has posted their stories here, it has helped me find my solution. Stay strong.

I feel so defeated. I’ve been waiting months to meet with an interventional neuroradiologist only to learn the imaging center they use is out of network. So my out of pocket cost would be ~$33k before I even get a diagnosis or treatment. They require a whole gambit of tests to diagnose and treat, and I was declined when I asked if we could go one by one and rule things out as we go to try to keep costs low.

I really don’t know where to go from here. I don’t want to keep spending time and money on doctors who can’t help me (an ENT and neurologist so far) and who won’t order more imaging or tests despite having an MRI that suspected IIH. My vision is OK (fortunately) so nobody knew what to do with me. I’m fairly certain it’s vascular (stops with compression) so feel I need an INR, I just can’t find one who would be covered by insurance!

At this point, I’m ready to throw the towel in and just hope it’s nothing serious. Trying to get help is more stressful than my actual PT. I wouldn’t even want to get a stent unless someone told me it’s life or death. I can live with this, it’s fortunately quiet and not 24/7 - I just don’t want an underlying cause to kill me one day.

I know many of you are managing the same battles, and I hope everyone gets help with as little stress and financial burden as possible. Please take care!

I’m curious whether anyone with PT has noticed changes related to hormones.

Does your PT get louder or quieter at certain points in your menstrual cycle (before/during your period, around ovulation, etc.)?

Did your PT change after starting or stopping birth control?

Specifically: has anyone noticed PT-changes with the Mirena IUD (levonorgestrel)?

26f here, 4 years ago I got strep throat followed by the worst flu that lead to the dreaded whooshing sound. I thought the whooshing sound (only in my right ear) would recede following my recovery from the flu but lo and behold it did not. Two or three months later and it only got louder, would stop when I pressed my neck (jugular vein) and would get louder upon leaning forward. I got it checked with a neurosurgeon and an ENT doctor (I have chronic allergic rhinitis) and they told me to get an MRI and CT angiography which I never got done because I was so afraid that something might come out wrong.
The whooshing meanwhile became louder, harsher and very machine-like. I just got used to it, accepting it as a harsh reality. Then around 1.5 years ago, I noticed that the sound had gotten lighter. I couldn’t hear my heartbeat anymore. This last one year the whooshing has completely disappeared. I had no invasive procedures done no stents inserted took only anti allergies. This is for the people who think it’s a hopeless situation- my PT resolved on its own with no procedures done.

After meeting with an interventional neuroradiolgist pulsatile tinnitus clinic, I’m getting the following tests done:

CT VENOGRAM BRAIN 

MRA BRAIN W WO CONTRAST 

MRA CAROTID W WO CONTRAST

MRI IAC CRANIAL NERVE W WO CONTRAST

I was surprised an MRV wasn’t on the list, but they’re confident they can diagnose with the CT instead, and I trust their expertise. I’m so relieved to have found this clinic after months of getting nowhere.

Anyway, they’re able to schedule all these for the same day, but I’m wondering if that would be a lot to do at once. The reason I’m considering it is because I live 1.5 hours away from the hospital it’ll be done at. They also offered to write me a sedative prescription, as I had an MRI done a few months ago and HATED it.

Curious what everyone would recommend and if y’all have encouraging thoughts lol thank you!

As the title says my PT was fixed but a year later I'm disruptively busy, have some cognitive fog, and I'm always exhausted. It's been very very annoying. Has anyone else had this happen? If so, does it go away?

I have had follow-ups to check absolutely everything and nobody can find anything, which is good mostly. I don't want anything to be wrong, but do want to know why I have half my energy, brain farts, and bad baance. If it's never going away , how to manage it? Instead of getting any answers even if those answers are that they don't really know, I am being responded to as though I'm crazy or have unmanaged health anxiety. TBH, I just want to know what's going on and how to manage it and I would rather be at literally any other place than the doctor's office asking.

My neurologist says becuase of the slow flow from the narrowing of veins that I shouldn’t take estrogen. Is this a thing??

I am 6 mo the pregnant and had PT start just on the right side at around 5 months. It decreases when I compress the neck vessels, and it varies from whooshing to high pitch/squeaky. It’s mostly at night but sometimes during the day. I mentioned it to my OB and they said it’s due to increased blood flow, but I am still worried given it’s unilateral and the changes in pitch. I never had it with my first pregnancy, but that was 4 years ago. Did anyone have this during pregnancy, should I push more for a workup?

Hi everyone! 37f with a davf causing extreme headaches and PT. I am going to move forward with an embolization and would love to hear from people what their recovery process was like. I am hearing everything from back to normal after a week or so to it taking over a year to feel yourself again. Hearing from any and all experience would be really helpful. For context mine is a Cognard IIA. Thank you so much!

I had tinnitus for a while, it turned out to be caused by a neck issue, and when that was treated it went away. I know most people aren’t that lucky, and that stuck with me. So I’ve been looking into what’s actually out there, apps- devices, treatments, and honestly, a lot of it seems generic. Same white noise, same breathing exercises, regardless of what’s actually going on with your tinnitus.

I’m working on building something better, but I don’t want to guess what people need. You live with this every day and I don’t anymore.

So genuinely: what do you wish existed? What have you tried that was completely useless? What actually helped, even slightly? What does every app or product get wrong?

Anything helps.